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tremors during sleep
I'm a 60 year old men, in excellent health, except for experiencing tremors during sleep that wake me up and have difficulty going back to sleep. As I start to fall sleep again, I feel these "rumbleling" (tremors) around my upper body. I immediately wake up again. These tremors last for about 10-15 seconds after I wake up. The first time I experienced this condition was exactly two years ago. It lasted for about four days and it simply went away. Except for minor incidents (by "minor" I mean I experience the tremors for about two nights and go away) with no major disruptions in my sleep patters. Last week, however, I experienced another episode which does not seem to be going away. The first two nights I simply could not go back to sleep at all. My body wanted to go back to sleep, but, as I mentioned above, everytime I fell sleep the tremors woke me up. I'm on my 9th day and there seems to be no sign of letting up. I went to see my doctor on the fourth day--He prescribed Zolpidem, which I have been taken since. Interestingly enough, even under the influence of the sleeping pill, the tremor wake me up, but they are short-lived since I go back to sleep almost immediately. My doctor said to take the medicine for about two weeks and essencially placed me on a "wait-and-see" mode. My concern at this point is "how long can I possobly survived on this medicine. Does any body "out there" know anything about this condition? As you can immagine, it is extremely debilitating. I'm, for my age, a very atheletic man who is the right things, no vices and bikes to work every day--About
twenty miles a day. Married with two grown children. My job is very stress-free and very enjoyable. Any ideas? Thank you very much.
twenty miles a day. Married with two grown children. My job is very stress-free and very enjoyable. Any ideas? Thank you very much.
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Thank you. So much valuable information here for people suffering. Glad it's navigable again.
P.S. If you're going to post you might want to log back in to the site first. Otherwise you will be prompted, and will have to get to the bottom of the thread a second time.
8 Comments
I did get a notification of your post so that seems to be working now, which is great. I have not posted for a long time, but wanted to let everyone know that the vibrations I felt in my bladder/pelvic area have completely disappeared since I had an infected root canal tooth redone last January.
I am planning to have an implant done but wanted the bone to regenerate that was destroyed by the infection so I don't have to do a bone graft.
What I found interesting is the meridian associated with that particular tooth is to the Kidney/Bladder area, which makes sense if that electrical pathway was being disrupted with the infection.
I don't know if anyone else has any root canal teeth or cavitations from extracted wisdom teeth, but if you do, I would highly recommend getting a cone beam scan to find out if there is any infection. It can detect hidden dental infections much better that regular dental x-rays.
My dental appointment is the 15 Sep so I will let you know how it goes.
I am planning to have an implant done but wanted the bone to regenerate that was destroyed by the infection so I don't have to do a bone graft.
What I found interesting is the meridian associated with that particular tooth is to the Kidney/Bladder area, which makes sense if that electrical pathway was being disrupted with the infection.
I don't know if anyone else has any root canal teeth or cavitations from extracted wisdom teeth, but if you do, I would highly recommend getting a cone beam scan to find out if there is any infection. It can detect hidden dental infections much better that regular dental x-rays.
My dental appointment is the 15 Sep so I will let you know how it goes.
That's fantastic! Another success story and line of investigation for others. Thanks for returning here!
ricepeg you are so welcome. I truly hope everyone will look into any hidden dental infections they might have.
The vibrations I originally felt in my neck were resolved when I went in for several physical therapy visits after a chiropractic treatment.
But the vibration in the bladder and pelvic area would come and go at various times no matter how many physical therapy treatments I did until last January when I had my root canal tooth redone. I have had to do several protocols with a certified nutritionist to try and clear up all of the infection and I am now able to fall asleep and stay asleep for 6-7 hours now. I am feeling so much better and I hope this will help everyone here as well.
The vibrations I originally felt in my neck were resolved when I went in for several physical therapy visits after a chiropractic treatment.
But the vibration in the bladder and pelvic area would come and go at various times no matter how many physical therapy treatments I did until last January when I had my root canal tooth redone. I have had to do several protocols with a certified nutritionist to try and clear up all of the infection and I am now able to fall asleep and stay asleep for 6-7 hours now. I am feeling so much better and I hope this will help everyone here as well.
This is to bring you up to date on my dental procedures. I had tooth no. 9, my root canal tooth, removed along with 4 other back teeth mostly on the upper jaw. I also had all 4 of my cavitations cleaned out.
I am still working with my certified nutritionist to clear up all the rest of the infection that had spread throughout my system from my hidden dental infections. She is doing this with herbal protocols.
I am sleeping 6-7 hrs. every night and no vibrations whatsoever. I am dealing with SIBO along with Hashimoto's, but am feeling so relieved to be able to sleep now.
The teeth that needed to be removed did not have any cavities...they just slowly died over the years and then had hidden infections that are much more easily detected with a cone beam scan rather than regular dental x-rays. I have always gone for my regular checkups and dental cleanings, but not to a biological dentist.
Hope others here will find this helpful, too!
I am still working with my certified nutritionist to clear up all the rest of the infection that had spread throughout my system from my hidden dental infections. She is doing this with herbal protocols.
I am sleeping 6-7 hrs. every night and no vibrations whatsoever. I am dealing with SIBO along with Hashimoto's, but am feeling so relieved to be able to sleep now.
The teeth that needed to be removed did not have any cavities...they just slowly died over the years and then had hidden infections that are much more easily detected with a cone beam scan rather than regular dental x-rays. I have always gone for my regular checkups and dental cleanings, but not to a biological dentist.
Hope others here will find this helpful, too!
Hi iegen, thanks for your post. any updates to the situation. thanks for your input
Hi specialmom, you are so welcome!
As far as an update, I am still doing herbal protocols with my nutritionist (2 yrs.) and I was able to sleep last night a full 9 hrs. I have been getting a good 6-7 hrs. each night so I am excited I was able to do 9 hrs. last night. No tremors, no having to get up and go to the bathroom.
I have not had any tremors for quite a long time now. I can't help but feel they were being caused, in my case, from these hidden dental infections, which may have also caused my Hashimoto's (autoimmune).
Hopefully, this will be helpful to you. Would love to hear how you are doing.
As far as an update, I am still doing herbal protocols with my nutritionist (2 yrs.) and I was able to sleep last night a full 9 hrs. I have been getting a good 6-7 hrs. each night so I am excited I was able to do 9 hrs. last night. No tremors, no having to get up and go to the bathroom.
I have not had any tremors for quite a long time now. I can't help but feel they were being caused, in my case, from these hidden dental infections, which may have also caused my Hashimoto's (autoimmune).
Hopefully, this will be helpful to you. Would love to hear how you are doing.
more updates please? x
have you been ok with implants?
I would like to see this thread resurrected. Some of us may be have further insights to share with others.
I am not sure if anyone will see this, but I have found a practical way to get to the end of this long thread without having to manually click through each page. Here's what works for me, at least in Chrome browser on a desktop computer. I simply type CTRL+F to search within the page, and search on the phrase "have an answer". This jumps to the bottom of the page, which automatically keeps triggering the page loading script until the thread is fully loaded. It takes a couple of minutes, but you don't have to watch it and can switch to other browser tabs. At that point the site functions normally without issue. If you're seeing this at all now, you're probably someone who has already clicked on "Notify me of new activity..."
Instead of "have an answer," alternatives that work are "notify," "respond," and "new activity."
I am not sure if anyone will see this, but I have found a practical way to get to the end of this long thread without having to manually click through each page. Here's what works for me, at least in Chrome browser on a desktop computer. I simply type CTRL+F to search within the page, and search on the phrase "have an answer". This jumps to the bottom of the page, which automatically keeps triggering the page loading script until the thread is fully loaded. It takes a couple of minutes, but you don't have to watch it and can switch to other browser tabs. At that point the site functions normally without issue. If you're seeing this at all now, you're probably someone who has already clicked on "Notify me of new activity..."
Instead of "have an answer," alternatives that work are "notify," "respond," and "new activity."
I have been able to confirm that hooking the back of my neck up to a TENS machine enables me to instantly kill the internal vibrations with the click of a button.
I decided to try this because, as previously related, I can achieve that effect by tapping my fingers on the same area.
I decided to go to sleep with the machine attached so I could experiment during waking up, when the diaphragm area is vibrating the strongest. I did have vibrations in my legs as I lay down to sleep, as is fairly typical, and was able to kill those with the TENS. The vibration is occurring, I start and stop the pulse, and the vibrations have completely stopped. This was also the case in the morning with the chest tremor.
I don't know the frequency (it's a cheap machine), and don't think it matters. I don't know if it's the electricity per se, or the way in which it vibrates muscles (as the finger-tapping would), in turn presumably jolting a nerve (vagus?).
Given this interesting result, I'm going to run the machine periodically in case it serves to stimulate the vagus in the manner of possibly being therapeutic.
It's also got me focused more on the ways in which my vagus nerve might have become irritated, including postural issues leading to reflux (hernia?) and also chronic pressure in my neck, which bends to the right. It may be that the thing that unites us all is irritation to the vagus nerve, even though this could occur in multiple ways. I am still struck by the fact that Toby also experienced what I did with the vibrations being triggered by listening to a certain tone. I also want to just note here that a woman on this thread got over the vibrations after discovering a slipped vertebral disc in her neck, or something along those lines.
I decided to try this because, as previously related, I can achieve that effect by tapping my fingers on the same area.
I decided to go to sleep with the machine attached so I could experiment during waking up, when the diaphragm area is vibrating the strongest. I did have vibrations in my legs as I lay down to sleep, as is fairly typical, and was able to kill those with the TENS. The vibration is occurring, I start and stop the pulse, and the vibrations have completely stopped. This was also the case in the morning with the chest tremor.
I don't know the frequency (it's a cheap machine), and don't think it matters. I don't know if it's the electricity per se, or the way in which it vibrates muscles (as the finger-tapping would), in turn presumably jolting a nerve (vagus?).
Given this interesting result, I'm going to run the machine periodically in case it serves to stimulate the vagus in the manner of possibly being therapeutic.
It's also got me focused more on the ways in which my vagus nerve might have become irritated, including postural issues leading to reflux (hernia?) and also chronic pressure in my neck, which bends to the right. It may be that the thing that unites us all is irritation to the vagus nerve, even though this could occur in multiple ways. I am still struck by the fact that Toby also experienced what I did with the vibrations being triggered by listening to a certain tone. I also want to just note here that a woman on this thread got over the vibrations after discovering a slipped vertebral disc in her neck, or something along those lines.
5 Comments
Wow. That's exciting news ricepeg. I received my TENS unit last week, but I haven't gotten around to trying it out yet. I bought a set of ear clip electrodes and was going to try tVNS via the ear as described in the Nemechek protocol, but maybe I'll just try the normal electrodes on the back of my neck first. I definitely have neck problems (which I may or may not have mentioned before) and I've started seeing an Osteopath for that. This treatment hasn't helped all that much yet, but at least she's more open to some of my theories about the vibrations and the vagus nerve. I also purchased a traction device (which I also haven't tried yet) to see if applying mild traction to my neck might help. Just need to get over the fear of experimentation...
Here's some more interesting reading:
https://www.sciencedaily.com/releases/2019/02/190213142700.htm
-b
Here's some more interesting reading:
https://www.sciencedaily.com/releases/2019/02/190213142700.htm
-b
Thank you for sharing that! I absolutely think this has something to do with vagus nerve and/or diaphagm and/or stomach/hiatal hernia issues. I had bad gastritis (I assume that's what it is) last week and the vibrations really kicked into high gear during that time, jolting me out of sleep worse than I'd experienced in months. I also get increased tremors when I take Vitamin B12 supplements, so now I'd like to figure out what B12 has to do with vagus nerve and stomach stuff.
skboren, I believe that my reflux/hernia problem was brought on by way too much sitting at the computer. I realized that I also had a chronically tight psoas while standing up, so the other day, throughout the day I consciously tried to let this go, and let my stomach hang out all the way. I think I had long been subconsciously pulling my stomach in, for aesthetic reasons and just believing that this was healthy. In any case, letting it all hang out led to a bunch of sudden “proto-coughs” or gasps that I associate with a hernia sliding back down. I did this knowing that I had had a few days of worse reflux and was being taken to a smorgasbord restaurant for my birthday. Despite all the food, I had a 100% reprieve from reflux that day, which surprised me and made me determine to keep working on this technique and improving posture.
On B12, the vagus aids in digesting B12 from food by stimulating the stomach to secrete intrinsic factor, so a malfunctioning (or severed) vagus can lead to B12 deficiency. This is a wild guess, but it may be that if your supplements aren't being so absorbed, they may end up causing irritation to further exacerbate the tremor. I think I may get a similar exacerbation from eatings lots of carbs (as you earlier mentioned), and B12 is needed for metabolising those, so there could be something to the B12 deficiency thing. Perhaps sublingual B12 could help, per this person's experience from another forum: "Since taking daily sublingual B12 my lifelong inherited symptoms of heartburn, bloating, constipation have all disappeared and also my breathing, swallowing and anxiety issues have all but gone. I tried coming off B12 for 2 weeks and all my problems returned. I am now taking 2500mcg liquid B12 twice daily. I think all my symptoms are linked to the vagus nerve. My sister gets 3 monthly injections but her symptoms return before her next jab. I am ifab negative with first B12 level 164 and second 236, doctors are not treating me for B12 deficiency as my levels are 'normal'. I have to sleep with 2 homemade sleeves to stop me wakening with numb hands (it works) and hoping that my nerves will someday repair. I have lots of other b12 related symptoms."
On B12, the vagus aids in digesting B12 from food by stimulating the stomach to secrete intrinsic factor, so a malfunctioning (or severed) vagus can lead to B12 deficiency. This is a wild guess, but it may be that if your supplements aren't being so absorbed, they may end up causing irritation to further exacerbate the tremor. I think I may get a similar exacerbation from eatings lots of carbs (as you earlier mentioned), and B12 is needed for metabolising those, so there could be something to the B12 deficiency thing. Perhaps sublingual B12 could help, per this person's experience from another forum: "Since taking daily sublingual B12 my lifelong inherited symptoms of heartburn, bloating, constipation have all disappeared and also my breathing, swallowing and anxiety issues have all but gone. I tried coming off B12 for 2 weeks and all my problems returned. I am now taking 2500mcg liquid B12 twice daily. I think all my symptoms are linked to the vagus nerve. My sister gets 3 monthly injections but her symptoms return before her next jab. I am ifab negative with first B12 level 164 and second 236, doctors are not treating me for B12 deficiency as my levels are 'normal'. I have to sleep with 2 homemade sleeves to stop me wakening with numb hands (it works) and hoping that my nerves will someday repair. I have lots of other b12 related symptoms."
b, thanks for the link. Interesting. It's good to know that "active 20V nVNS positioned directly over the carotid artery results in electric field penetrance that activates the vagus nerve." I've read elsewhere that the carotid should be avoided with TENS (along with the heart), so it would be worth proceeding with caution. Their max voltage was 24V. Their sham position of "far lateral" seems to be closer to my experiment, either side of the back of the neck. Not sure of my voltage, but it was lowest setting of a cheap TENS machine. I figure that while this works in this position to cut the tremor like an off switch, active therapeutic stimulation would need to be done cautiously over the carotid. By the way my method to secure the TENS was to remove the gel pads and use kinesiotape directly over the metal electrode clips. This can be more painful as the charge isn't spread out over the gel, but it is guaranteed to stay in place through the night. In hindsight I could probably tape on the gel pads.
A few things come to mind (in no particular order):
- There are some theories that if you're deficient in B12 (and other B vitamins) and you start supplementing, you could have some nervous system issues when you're nerves "wake back up."
- Sitting at the computer: I'm the same and so I now have an adjustable standing desk at work that I can use both while sitting and standing. I make sure to switch between the 2 positions periodically during the day. I also get up and go for a short walk about every 30 minutes.
- I've been trying a transdermal multivitamin patch from a company called PatchMD. I haven't had any tests in a while so I don't know precisely how the patches have affected my vitamin status.
- Recently, I started exercising more (mostly because it's now warmer in the NorthEast US) and my vibrations and sleep in general have gotten worse. Maybe I've irritated my vagus nerve by exacerbating my hiatal hernia or my neck problems? I'm now once again having feelings like I'm experiencing central sleep apnea. This gets me to start obsessing over whether this is indeed central sleep apnea caused by some vagus nerve dysfunction.
- I did a TENS treatment on my neck muscles a couple of days ago, but didn't see any affects on my sleep one way or the other. I haven't tried this *while* I'm having the vibrations yet. I also haven't tried tVNS via the ear yet.
- There are some theories that if you're deficient in B12 (and other B vitamins) and you start supplementing, you could have some nervous system issues when you're nerves "wake back up."
- Sitting at the computer: I'm the same and so I now have an adjustable standing desk at work that I can use both while sitting and standing. I make sure to switch between the 2 positions periodically during the day. I also get up and go for a short walk about every 30 minutes.
- I've been trying a transdermal multivitamin patch from a company called PatchMD. I haven't had any tests in a while so I don't know precisely how the patches have affected my vitamin status.
- Recently, I started exercising more (mostly because it's now warmer in the NorthEast US) and my vibrations and sleep in general have gotten worse. Maybe I've irritated my vagus nerve by exacerbating my hiatal hernia or my neck problems? I'm now once again having feelings like I'm experiencing central sleep apnea. This gets me to start obsessing over whether this is indeed central sleep apnea caused by some vagus nerve dysfunction.
- I did a TENS treatment on my neck muscles a couple of days ago, but didn't see any affects on my sleep one way or the other. I haven't tried this *while* I'm having the vibrations yet. I also haven't tried tVNS via the ear yet.
I just finished a book by a Dr Nemechek who has developed protocols to treat autonomic nervous system dysfunction. (I believe that the sleep vibrations are a symptom of ANS dysfunction). His book is primarily concerned with his protocol for autism, but it can also be applied to ANS dysfunction which he believes is due to systemic inflammation. The main parts of his protocol involve treating Small Intestinal Bacterial Overgrowth and lack of Omega-3 fatty acids. In certain cases he also prescribes transdermal vagus nerve stimulation. Many of the symptoms he describes resonated with me and I may look into seeing him at his clinic near Phoenix, AZ.
I highly recommend you get a copy of his book (it's a quick read) to see if anything resonates with you. Just do a search on Nemechek Protocol. You'll find his blog and a few videos. If you search hard enough, you can also find a description of his protocol. He also has a quick checkbox test to see if you fit the criteria for ANS dysfunction. I checked many of the boxes.
I highly recommend you get a copy of his book (it's a quick read) to see if anything resonates with you. Just do a search on Nemechek Protocol. You'll find his blog and a few videos. If you search hard enough, you can also find a description of his protocol. He also has a quick checkbox test to see if you fit the criteria for ANS dysfunction. I checked many of the boxes.
9 Comments
Thanks. I have actually watched and read some Nemechek stuff, also. I can't do fish oil, it gives me bad histamine intolerance reactions. But the vagal nerve stimulator device he uses looked really interesting. If you go to AZ and pursue that, please do report back! I agree that we seem to have some autonomic dysfunction going on.
Nemechek feels that most histamine reactions to fish oil are due to "bad" fish oil. The histamine reactions are actually due to the histamine produced by bacteria in the fish oil as opposed to the fish oil itself.
Has anyone had their glycene level checked?
Helpful, thanks b. Early on, I was diagnosed with ANS dysfunction by a cardiologist (at that time I had spontaneous tachycardia), and with SIBO by a naturopath. I continue to experience the sense of very active production of intestinal/stomach gases (leading to belching and reflux). This is one symptom that clearly arrived with my sudden onset, and has stayed with me. If you recall, I had been gung-ho with various probiotics and ferments, thinking I was combating candida, and I had stupidly just taken an NSAID on an empty stomach (I'd hardly ever taken those so was ignorant in that regard, and this was the third day in a row of my three-day test). I was intending for this to combat perceived inflammation. Essentially I felt an issue in my gut and soon fainted. After that, the candida went rogue into my mouth and genitals, and I believe probably other pathogenic gut bacteria also went rogue, giving me SIBO (and possibly set up shop wherever else it could get to). A couple of weeks of adrenaline spikes and weird electrical sensations ensued, before resolving into something more on the level that is commonly described here. Incidentally, although I trace my issues to this dramatic onset, I also had experienced some of the similar buzzing while falling asleep about a year prior, during times of stress. Likely, whatever I had then at a low level suddenly got a whole lot worse, and then somewhat improved but never went away.
Just rehashing this because yes, in my case as well, the Nemechek model would make perfect sense. Something "active" in my gut is clearly involved, and I have certainly had symptoms of autonomic dysregulation. I'm off to get me some good fish oil and some Nemecheck info.
Just rehashing this because yes, in my case as well, the Nemechek model would make perfect sense. Something "active" in my gut is clearly involved, and I have certainly had symptoms of autonomic dysregulation. I'm off to get me some good fish oil and some Nemecheck info.
This all "fits" ricepeg. Probiotics and ferments can be exactly what you *don't* want depending on what is actually wrong with your gut. Although whether probiotics (and probiotic foods) are contraindicated with SIBO seems to be a matter of some debate. Which seems to be typical for just about anything having to do with the gut these days. I think that one of us (maybe it was you ricepeg) saw a neurologist who wondered whether this was some type of PTSD. I wonder whether these kinds of significant health "events" have caused some kind of PTSD which can also be associated with dysautonomia.
Beyond that SIBO and Candida can cause malabsorption which can lead to vitamin deficiencies (which I apparently have) which can lead to all kinds of neurological issues.
Now for the bad news. I started on a good brand of high DHA fish oil at high dosage and it may have kicked off some significant anxiety. It's always hard to tell with me. But I have seen posts from a number of people and one case study that indicate that some people have a problem with fish oil. It's never easy...
I see my functional medicine doc next week and I'm going to ask him if he's willing to prescribe a course of Rifaximin without making test for SIBO. Although I was also once diagnosed with SIBO, I'm not sure that the tests are accurate. At this point I feel like I just need to try things based on hunches rather than testing. It's going to be an expensive experiment as Rifaximin is not covered by insurance and will probably run me over $500 for a 10-day course.
Beyond that SIBO and Candida can cause malabsorption which can lead to vitamin deficiencies (which I apparently have) which can lead to all kinds of neurological issues.
Now for the bad news. I started on a good brand of high DHA fish oil at high dosage and it may have kicked off some significant anxiety. It's always hard to tell with me. But I have seen posts from a number of people and one case study that indicate that some people have a problem with fish oil. It's never easy...
I see my functional medicine doc next week and I'm going to ask him if he's willing to prescribe a course of Rifaximin without making test for SIBO. Although I was also once diagnosed with SIBO, I'm not sure that the tests are accurate. At this point I feel like I just need to try things based on hunches rather than testing. It's going to be an expensive experiment as Rifaximin is not covered by insurance and will probably run me over $500 for a 10-day course.
Have looked into Dr. Nemechek some more and am further encouraged to pursue it. His model accounts for the GERD-like symptoms as well.
My experience with being able to stop my vibrations abruptly with a tap to the head or back of the neck, and with the vibrations able to be induced any time of day by listening to a certain musical tone, strongly implies an autonomic dysfunction to do with the brain and vagal nerve signalling.
So I'm starting on the olive oil and quality fish oil (after understanding and accepting the reasoning for both), and am sourcing some Inulin while also planning to seek a prescription of Rifaximin (a unique antibiotic able to target SIBO, routinely prescribed also for treatment of traveler's diarrhea, including in advance of travelling abroad just in case it's needed–I do travel so I think this shouldn't be too hard to request). I'll probably just hold off for a few weeks on the Rifaximin however, which seems more of a nuclear option on the SIBO. Would like to give the other elements more of a chance to lay the groundwork. Once taken, though, I would hope to see a reduction in GERD symptoms. Then if the SIBO is in the causal pathway of the vibrations, then I suppose there would be some new hope that they might resolve. Dr. Nemecheck mentioned that around the age of 40-45 is when the scales seem to tip towards needing the vagal device to help in recovery. I'm 44, so have no real sense of that either way. Since in all our cases the vibrations seem to be able to improve, even completely in Toby's case, then perhaps the stimulation device wouldn't be needed by any of us (assuming that Nemecheck is on to something in our case).
My experience with being able to stop my vibrations abruptly with a tap to the head or back of the neck, and with the vibrations able to be induced any time of day by listening to a certain musical tone, strongly implies an autonomic dysfunction to do with the brain and vagal nerve signalling.
So I'm starting on the olive oil and quality fish oil (after understanding and accepting the reasoning for both), and am sourcing some Inulin while also planning to seek a prescription of Rifaximin (a unique antibiotic able to target SIBO, routinely prescribed also for treatment of traveler's diarrhea, including in advance of travelling abroad just in case it's needed–I do travel so I think this shouldn't be too hard to request). I'll probably just hold off for a few weeks on the Rifaximin however, which seems more of a nuclear option on the SIBO. Would like to give the other elements more of a chance to lay the groundwork. Once taken, though, I would hope to see a reduction in GERD symptoms. Then if the SIBO is in the causal pathway of the vibrations, then I suppose there would be some new hope that they might resolve. Dr. Nemecheck mentioned that around the age of 40-45 is when the scales seem to tip towards needing the vagal device to help in recovery. I'm 44, so have no real sense of that either way. Since in all our cases the vibrations seem to be able to improve, even completely in Toby's case, then perhaps the stimulation device wouldn't be needed by any of us (assuming that Nemecheck is on to something in our case).
Sounds like a plan ricepeg. My functional medicine doc agreed to prescribe Rifaximin as an empirical test for SIBO. In the US, Rifaximin is pretty expensive and health insurance typically won't cover it unless you have IBS-D, which I don't have. So I'll have to pay for it out of pocket. But I'm willing to do that and go for the "nuclear option" at this point. I still have some lingering digestive issues (including malabsorption as diagnosed by my functional doc) so this seems worth it at this point.
I'm still toying with the idea of going to see Dr Nemechek, but I'm going to try the above first. I'm seeing 3 different practitioners right now not including my GP and even though my interactions with the alternative medicine practitioners have been pretty positive, I'm just so tired of it all...
BTW, you can find instructions online for making your own transcutaneous vagus nerve stimulator including some mention of the settings Dr Nemechek uses. Search for "make your own vagus nerve stimulator healthrising" and/or "make your own vagus nerve stimulator phoenixrising"
Please report back on how you're doing on this protocol. I'll do the same after I do my course of Rifaximin.
I'm still toying with the idea of going to see Dr Nemechek, but I'm going to try the above first. I'm seeing 3 different practitioners right now not including my GP and even though my interactions with the alternative medicine practitioners have been pretty positive, I'm just so tired of it all...
BTW, you can find instructions online for making your own transcutaneous vagus nerve stimulator including some mention of the settings Dr Nemechek uses. Search for "make your own vagus nerve stimulator healthrising" and/or "make your own vagus nerve stimulator phoenixrising"
Please report back on how you're doing on this protocol. I'll do the same after I do my course of Rifaximin.
More info on vagus nerve stimulation and PTSD
Oops. I had meant to include a link in my comment of Feb 17. Now I can't remember which link that was. Sorry...
How is everyone? I am doing ok. Still no tremors, but experiencing memory issues. Sometimes my mouth doesn’t seem to work right. My face feels tight. Not sure if it is related.
6 Comments
I'm glad you are ok. I'm sorry about the memory issues and mouth and face. I can relate to memory issues, those began for me maybe two years ago. Mouth not working right I can also relate to, as I feel like when I chew food, my chewing is uncoordinated. It feels as though I'm about to bite my tongue. And in fact I do bite my tongue more often. I also feel a lack of coordination descending stairs. I'm not sure about the face feeling tight. You mean the skin of your face? Or the muscles?
I have not posted in some time. I still get the tremors, though if I keep carbs low they improve. Too bad I cant keep carbs low and maintain energy! The other surprising factor that affects tremors that I've discovered is vitamin B12! If I take a B12 supplement, or eat something particularly high in B12 like beef liver or kidney, I get bad tremoring for the next day or two during sleep. I cannot fathom why, but it's very consistent.
I have not posted in some time. I still get the tremors, though if I keep carbs low they improve. Too bad I cant keep carbs low and maintain energy! The other surprising factor that affects tremors that I've discovered is vitamin B12! If I take a B12 supplement, or eat something particularly high in B12 like beef liver or kidney, I get bad tremoring for the next day or two during sleep. I cannot fathom why, but it's very consistent.
The B12 connection is interesting. I'm not sure whether I've experienced that or not. B12 can certainly be stimulating so I wonder if we're all just very sensitive to any kind of stimulant which results in increased tremors. If you poke around phoenixrising.me a bit you'll see some theories that supplementing with B12 when you've been low in B12 can ramp up methylation to a point where some people experience symptoms (neuropathies, anxiety, etc) due to sudden increased energy production. You might try supplementing with vitamin B2. I can't explain that carb connection unless this too has to do with sudden increased energy production.
Thanks. I actually do take B2, three times a day, 25mg, for migraines, and it helps hugely. I've been doing that for a long time, now. It doesn't seem to help me tolerate B12 any better. I am experimenting with lithium orotate, since lithium is supposed to help with B12 utilization, and I've done hair mineral tests that always show undetectable levels of lithium, indicating that I need it. Too early to report results on that. I'm glad you've got no tremors....that's something! I can sure relate to the memory issues, and I'm only in my mid 30s. Super frustrating. I do believe we can heal from all of this. The solutions are out there.
My face on one side is chronically tight, both in the jaw muscles and further around towards the nostril, where I believe it affects sinus drainage. I do periodically bite the inside of my mouth (mostly left). This is all because my jaw is lopsided, and hence I have right-side ear pain and TMJ (and tinnitus). And that's because my head is lopsided, with a lot of right-side neck tightness and some shoulder issues. And so the compensations keep going downwards, affecting the positioning of my rib cage, breathing muscles, pelvis, etc. I do wonder whether this situation has compressed an important nerve, such as the vagus nerve in the neck area. One would think that constant/frequent pressure/impingement could create a dysfunction. At the very least, my postural distortion (and associated pain and lack of mobility) have contributed to higher levels of systemic stress. I might not be a stretch to call it mild trauma, which raises the possibility of mechanisms of PTSD. My cardiologist suggested I may have that, as my symptoms sounded similar to a PTSD patient of his.
sorry for my writing and spelling i'm not much for writing and can't figure out to even edit the spelling
I have same face tension and other symptoms like the shaking in my head and body as i'm trying to fall a sleep i also have Toby1101 high blood count they said it can be caused by a slow growing blood cancer called polycythaemia vera treatment is where they drain blood from you i have not seen the blood doctor yet for this i also have gastroparesis (food sits in stomach) also acid reflux and they say i have fibromyalgia snf snxiety but it all seems food or digestion related some other symptoms i have is burning eyes and mouth,leg and arm weakness,short of breath,left ear ringing, get hot in the face,burning in lega and arms like lava running threw my veins feels like some bad hang over or something, light white tongue, numb tingly hands, back feels like i been beat with a base ball bat, shoulder pain, brain fog, thristy and tired after eating sometimes and so much more high dose vitamin d worked to help me for 4 years not it not working been going threw this for 5 years like to hear back from you
Hi ricepeg,
Sorry things haven't improved much for you. I guess I'm in the same boat. I can sleep through the night (usually at least 7 hours) with the help of 20mg amitriptyline and 300mg gabapentin, but the mornings are not pleasant. The vibrations in the morning are pretty draining and are often accompanied by a burning sensation in my arms. The burning sensation lessens quit a bit a few minutes after I get up, but my arms are always "sensitive" during the day. I assume this is some sort of neuropathy as are the vibrations.
For me, the anxiety is pretty much under control. No major anxiety attacks like I was having about a year ago. Although I continue to have a constant low-level of anxiety (more so than the constant level of anxiety I had years ago before I got sick). I'm continuing to work with a functional medicine doctor. My most recent NutrEval test showed that all of my B vitamins are low (worse than the last test) and that this is due to some sort of malabsorption of unknown cause. I also have an overgrowth of certain non-pathogenic bacteria in my gut and so he's started me on some herbal anti-bacterials to try to address that. This is all pretty confusing since I'd been taking a pretty hefty multi-vitamin for months prior to this test and so (if the test is accurate) my malabsorption problem must be pretty severe.
Yes, the "notify me" function seems to be working again. Although it's either working sporadically or it only sends notifications for new posts as opposed to comments.
I'm sorry I can't be of more help.
-b
Sorry things haven't improved much for you. I guess I'm in the same boat. I can sleep through the night (usually at least 7 hours) with the help of 20mg amitriptyline and 300mg gabapentin, but the mornings are not pleasant. The vibrations in the morning are pretty draining and are often accompanied by a burning sensation in my arms. The burning sensation lessens quit a bit a few minutes after I get up, but my arms are always "sensitive" during the day. I assume this is some sort of neuropathy as are the vibrations.
For me, the anxiety is pretty much under control. No major anxiety attacks like I was having about a year ago. Although I continue to have a constant low-level of anxiety (more so than the constant level of anxiety I had years ago before I got sick). I'm continuing to work with a functional medicine doctor. My most recent NutrEval test showed that all of my B vitamins are low (worse than the last test) and that this is due to some sort of malabsorption of unknown cause. I also have an overgrowth of certain non-pathogenic bacteria in my gut and so he's started me on some herbal anti-bacterials to try to address that. This is all pretty confusing since I'd been taking a pretty hefty multi-vitamin for months prior to this test and so (if the test is accurate) my malabsorption problem must be pretty severe.
Yes, the "notify me" function seems to be working again. Although it's either working sporadically or it only sends notifications for new posts as opposed to comments.
I'm sorry I can't be of more help.
-b
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That's helpful enough, thanks b. I've had those arms, though not for a long stretch I don't think. Maybe I should try to have my B levels checked. I've lost track of all that.
OK, so it looks like we're now getting notifications on new comments as well which is very helpful!
If you do get your B levels checked, remember that blood levels don't tell the whole story. You can have perfectly fine (even high) blood levels of the B vitamins and still be functionally deficient. In other words, the vitamins are not getting into your cells. This is not a view shared by most conventional doctors. However, if you're blood levels of B vitamins are low, then you're definitely deficient. You can probably search for "B vitamins functional deficiency" for more information.
At the very least, if more of us "vibrators" could do tests like this, we could try to determine additional commonalities.
BTW, I seem to remember that you were diagnosed with sleep apnea and were going to start on CPAP or playing the digeridoo. What's the latest on that?
If you do get your B levels checked, remember that blood levels don't tell the whole story. You can have perfectly fine (even high) blood levels of the B vitamins and still be functionally deficient. In other words, the vitamins are not getting into your cells. This is not a view shared by most conventional doctors. However, if you're blood levels of B vitamins are low, then you're definitely deficient. You can probably search for "B vitamins functional deficiency" for more information.
At the very least, if more of us "vibrators" could do tests like this, we could try to determine additional commonalities.
BTW, I seem to remember that you were diagnosed with sleep apnea and were going to start on CPAP or playing the digeridoo. What's the latest on that?
haha, oh yes, I already sold the didgeridoo. Partly since I didn't realize that it requires wax on the mouthpiece to work well, but that's another story. In my case the sleep apnea was apparently caused by reflux. At least, I was able to virtually eradicate my significant snoring by raising my bedhead. When I travel and stay in hotels I usually pull out a drawer and put it under the mattress. I still need to do another sleep test to prove that the apnea has resolved. That seems advisable, because if I have a car accident I could become liable on the basis that the last test says I have apnea.
Wondering how others are going, and whether you have any improvement or new insights.
Frankly, this is still not much fun. Waking up with vibrations in the chest area, and also some random body-wide vibrations and fasciculations during the daytime (often a kind of tickle in the front and side of neck). When going to sleep it's usually in my legs before it starts up in the chest area (if I notice the chest at all before drifting off). Always in the chest in the morning though.
At least I don't have as much flooding with adrenaline as I used to have. And some year-long minor urinary incontinence seems to have gone away. Some of the autonomic deregulation can be re-regulated, I guess.
Some days anxiety is pretty high and it's hard to work, because I would rather procrastinate than face clients and deadlines. This may be made worse by sleep deprivation: still finding it hard to feel tired before midnight, and usually would get less than 6 hours. Can get really low energy crashes during the day too, like a cross between chronic fatigue and reactive hypoglycemia–not exactly helped by some bad eating habits.
I have so many theories, but no real answers. Have to learn to be content with it, but would love to be rid of it.
Not really complaining: just double checking others out there have something similar, and really just checking in.
On the plus side, I just noticed "Notify me of new activity on this question." That's handy.
Oh, and I did try some intermittent fasting for a few days, and really noticed some daytime improvement. An hour or so after I normally would eat breakfast, I started to suddenly feel weirdly better, though I was expecting to feel worse due to hunger. So the issue could possibly be digestive, which in theory should ease during fasting. Or possibly my sense of improvement could be related to autophagy or HGH or other fast-related changes. I plan to try again for longer stints.
At least I don't have as much flooding with adrenaline as I used to have. And some year-long minor urinary incontinence seems to have gone away. Some of the autonomic deregulation can be re-regulated, I guess.
Some days anxiety is pretty high and it's hard to work, because I would rather procrastinate than face clients and deadlines. This may be made worse by sleep deprivation: still finding it hard to feel tired before midnight, and usually would get less than 6 hours. Can get really low energy crashes during the day too, like a cross between chronic fatigue and reactive hypoglycemia–not exactly helped by some bad eating habits.
I have so many theories, but no real answers. Have to learn to be content with it, but would love to be rid of it.
Not really complaining: just double checking others out there have something similar, and really just checking in.
On the plus side, I just noticed "Notify me of new activity on this question." That's handy.
Oh, and I did try some intermittent fasting for a few days, and really noticed some daytime improvement. An hour or so after I normally would eat breakfast, I started to suddenly feel weirdly better, though I was expecting to feel worse due to hunger. So the issue could possibly be digestive, which in theory should ease during fasting. Or possibly my sense of improvement could be related to autophagy or HGH or other fast-related changes. I plan to try again for longer stints.
An interesting blog post about stool testing and the microbiome. https://ngmedicine.com/the-benefits-of-comprehensive-stool-testing/. This particular blogger is primarily interested in the microbiome and gut health.
It's been quite a while since I've posted. For the most part things have been good for me with consistent minimal tremors. Not so much that they interfere with sleep but enough for me to know that they are there. Particularly if I get woken up suddenly - such as a phone call, alarm, etc. Just recently however the tremors have almost completely resolved. Once a week or so I'll wake up feeling crappy for no apparent reason - a hangover is the best way to describe it. This has been going on for a long time. A while ago I started looking closely at my diet (which is healthy) to see if I could pinpoint any food intolerances. I also spent a lot of time looking into histamine intolerance/mast cell issues.
As far as I can tell the combination of eliminating some foods I may have been reacting to and taking some different probiotics that are supposed to help with histamine issues seems to be of benefit. Taking a yucca supplement also seems to make a difference - I have no idea why. I originally thought that yucca helped due to ammonia issues (since that's what it seems to help with) but as far as I can tell that isn't the case . Vitamin E seems to be a good thing as well.
For a while I was taking calcium citrate and that seemed to help but I've since stopped and noticed little difference. If I'm remembering correctly calcium has a role in stabilizing mast cells so that may be the connection.
Yogurt, keifer, etc has always made my tremors significantly worse and since I started the histamine research I found out that one of the primary cultures used in making yogurt, etc - Lactobacillus casei - promotes histamine.
Ultimately I think the root cause is in the GI and the histamine/mast cell aspect seems to logically fit with most of what I've experienced/learned to date.
I think there's a connection with tinnitus as well since I can notice a difference in tinnitus levels after eating certain foods. I cannot correlate tinnitus levels with the tremor levels (I don't think) however I didn't have tinnitus before all of the GI stuff started years ago and the handful of times over the years my GI was good the tinnitus and tremors were either non-existent or minimal. One of those times was when I was taking large amounts of HCl. I recently tried HCl again but cannot tolerate even small amounts now. I believe it's the betaine (methyl donor) that's causing the issue. I'm on the over methylated side of things and don't react well to methyl donors in general. However, a few years ago some methyl donors seemed to really help - weird.
As far as I can tell the combination of eliminating some foods I may have been reacting to and taking some different probiotics that are supposed to help with histamine issues seems to be of benefit. Taking a yucca supplement also seems to make a difference - I have no idea why. I originally thought that yucca helped due to ammonia issues (since that's what it seems to help with) but as far as I can tell that isn't the case . Vitamin E seems to be a good thing as well.
For a while I was taking calcium citrate and that seemed to help but I've since stopped and noticed little difference. If I'm remembering correctly calcium has a role in stabilizing mast cells so that may be the connection.
Yogurt, keifer, etc has always made my tremors significantly worse and since I started the histamine research I found out that one of the primary cultures used in making yogurt, etc - Lactobacillus casei - promotes histamine.
Ultimately I think the root cause is in the GI and the histamine/mast cell aspect seems to logically fit with most of what I've experienced/learned to date.
I think there's a connection with tinnitus as well since I can notice a difference in tinnitus levels after eating certain foods. I cannot correlate tinnitus levels with the tremor levels (I don't think) however I didn't have tinnitus before all of the GI stuff started years ago and the handful of times over the years my GI was good the tinnitus and tremors were either non-existent or minimal. One of those times was when I was taking large amounts of HCl. I recently tried HCl again but cannot tolerate even small amounts now. I believe it's the betaine (methyl donor) that's causing the issue. I'm on the over methylated side of things and don't react well to methyl donors in general. However, a few years ago some methyl donors seemed to really help - weird.
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All fermented and aged products are high histamine.
Lately, I've read quite a few things that relate histamine to issues including Alzheimers, digestive issues, tinnitus, anxiety. It might be that it's not really the histamine itself, but some inflammatory process that causes additional histamine production (just a theory of mine). Having said that, I clearly have high histamine issues even though blood tests don't seem to indicate that. My blood histamine levels are always low which is confusing. A few months ago my face started feeling like it was burning and was red (flushing) almost all of the time. I realized that in the preceding weeks, I had started eating a lot of a new vegetable-based yogurt. I was also drinking a bit more wine than I usually do and eating a lot of oysters (which are medium-high in histamine). I stopped all of these and the facial flushing stopped. Didn't have much of an effect on the vibrations, but I do believe that it reduced the level of my tinnitus a bit.
Maybe I'll try one of the natural histamine lowering/mast-cell stabilizing supplements (like Neuroprotek) for a while to see what happens. I've recently gotten my list of supplements down to reasonable levels (they all fit in a shoebox now) and I'm not really anxious to add another one back in.
As to the whole digestive/microbiome issue: I really wish the US in general was more forward-thinking about this sort of thing. I would definitely try a fecal microbiota transplant at this point. As it stands now, I'd either have to figure out how to do this myself (no thanks) or travel out of the country. My wife and I were thinking of going to the UK next year so maybe I'll look into that...
Lately, I've read quite a few things that relate histamine to issues including Alzheimers, digestive issues, tinnitus, anxiety. It might be that it's not really the histamine itself, but some inflammatory process that causes additional histamine production (just a theory of mine). Having said that, I clearly have high histamine issues even though blood tests don't seem to indicate that. My blood histamine levels are always low which is confusing. A few months ago my face started feeling like it was burning and was red (flushing) almost all of the time. I realized that in the preceding weeks, I had started eating a lot of a new vegetable-based yogurt. I was also drinking a bit more wine than I usually do and eating a lot of oysters (which are medium-high in histamine). I stopped all of these and the facial flushing stopped. Didn't have much of an effect on the vibrations, but I do believe that it reduced the level of my tinnitus a bit.
Maybe I'll try one of the natural histamine lowering/mast-cell stabilizing supplements (like Neuroprotek) for a while to see what happens. I've recently gotten my list of supplements down to reasonable levels (they all fit in a shoebox now) and I'm not really anxious to add another one back in.
As to the whole digestive/microbiome issue: I really wish the US in general was more forward-thinking about this sort of thing. I would definitely try a fecal microbiota transplant at this point. As it stands now, I'd either have to figure out how to do this myself (no thanks) or travel out of the country. My wife and I were thinking of going to the UK next year so maybe I'll look into that...
// Maybe I'll try one of the natural histamine lowering/mast-cell stabilizing supplements (like Neuroprotek) for a while to see what happens. //
bl218, just for your recall, in Feb 2017 you reported that 1mg of Ketofin before bed "pretty much stopped (or at least greatly reduced) the vibrations."
I appreciate the report Mike, and will circle back around to investigate this more. I had been having kefir, yoghurts and probiotics before my major onset, so that part makes sense. I've been looking for models with greater explanatory power. In particular, to explain excessive adrenaline and some relation to sleep, and then ideally also things like tinnitus and GERD. I've just twigged that excess adrenaline could be the body's response to high histamine, and been reminded that histamine regulates sleep. Interesting.
bl218, just for your recall, in Feb 2017 you reported that 1mg of Ketofin before bed "pretty much stopped (or at least greatly reduced) the vibrations."
I appreciate the report Mike, and will circle back around to investigate this more. I had been having kefir, yoghurts and probiotics before my major onset, so that part makes sense. I've been looking for models with greater explanatory power. In particular, to explain excessive adrenaline and some relation to sleep, and then ideally also things like tinnitus and GERD. I've just twigged that excess adrenaline could be the body's response to high histamine, and been reminded that histamine regulates sleep. Interesting.
Histamine is a very interesting and involved topic with lots of unknowns. Based on my research my thoughts are focused on histamine in the GI and the H2 receptors. GI histamine is apparently related to HCl production and several years ago I had good results with taking betaine HCl. Looking back I now am wondering if it was because of the betaine HCL somehow moderated the GI histamine production?
Methylation is also part of the histamine cycle - it is part of the process that breaks down histamine. So in hindsight I wonder if that's why I responded well to methyfolate, methyl B12, etc. Now I get negative reactions pretty much across the board from anything that increases methylation. I'm assuming that is because my system has 'normalized' (for me) and by default I believe I tend towards overmethylation.
Ben Lynch has a post out there on histamine and suggests creatine and phosphatidylcholine - http://mthfr.net/histamine-intolerance-mthfr-and-methylation/2015/06/11/. I recently tried creatine again and had negative reactions - but it was fine in the past. I didn't try phosphatidylcholine.
I've tried quercetin several times with no noticeable difference. I've tried several of the strains of probiotics that are supposed to lower histamine with I believe positive results - those for me seem to work over days/weeks vs hours with some of the other things.
At any rate, looking at everything histamine seems to be something that ties a number of seemingly unrelated things together for me.
I think there's a lot more tied to the GI microbiome than is realized today. Who would have ever guessed that a significant insult to my GI would have caused years of all kinds of seemingly unrelated problems. But it would appear to be the case.
bl218 - based on everything I've read over the years I think the idea of fecal transplant is very interesting. If I were in the same situation I was several years ago I would probably be pursuing that - actually if I had access to that right now I'd give it some very serious thought. Outside of the yuk factor the upsides seem to outweigh the downsides.
Methylation is also part of the histamine cycle - it is part of the process that breaks down histamine. So in hindsight I wonder if that's why I responded well to methyfolate, methyl B12, etc. Now I get negative reactions pretty much across the board from anything that increases methylation. I'm assuming that is because my system has 'normalized' (for me) and by default I believe I tend towards overmethylation.
Ben Lynch has a post out there on histamine and suggests creatine and phosphatidylcholine - http://mthfr.net/histamine-intolerance-mthfr-and-methylation/2015/06/11/. I recently tried creatine again and had negative reactions - but it was fine in the past. I didn't try phosphatidylcholine.
I've tried quercetin several times with no noticeable difference. I've tried several of the strains of probiotics that are supposed to lower histamine with I believe positive results - those for me seem to work over days/weeks vs hours with some of the other things.
At any rate, looking at everything histamine seems to be something that ties a number of seemingly unrelated things together for me.
I think there's a lot more tied to the GI microbiome than is realized today. Who would have ever guessed that a significant insult to my GI would have caused years of all kinds of seemingly unrelated problems. But it would appear to be the case.
bl218 - based on everything I've read over the years I think the idea of fecal transplant is very interesting. If I were in the same situation I was several years ago I would probably be pursuing that - actually if I had access to that right now I'd give it some very serious thought. Outside of the yuk factor the upsides seem to outweigh the downsides.
ricepeg, yes I recall the Ketotifen experiment. It's not a natural supplement, but it is a strong anti-histamine/mast cell stabilizer. I'm not sure it helped the vibrations as much as amitriptyline does though. Of course amitriptyline is also a much stronger anticholinergic. And amitriptyline is also considered to be a "neuromodulator" where Ketotifien isn't. From what I've read, it can take a while for natural mast cell stabilizers to have an effect. I'm not sure whether that's really true or whether it's something the supplement companies say to keep you on the hook. But thanks for the reminder. This has gone on so long and I've posted so much about it that I often forget what I've tried.
Mike, yeah...like anything else I've tried I guess it all depends on how desperate I get. Right now, my symptoms are being managed well enough so that I don't feel it's critical to try something like a fecal transplant. For me, the "yuck factor" is not an issue. It's more the cost and inconvenience of having to go out of the country to have this done.
Mike, yeah...like anything else I've tried I guess it all depends on how desperate I get. Right now, my symptoms are being managed well enough so that I don't feel it's critical to try something like a fecal transplant. For me, the "yuck factor" is not an issue. It's more the cost and inconvenience of having to go out of the country to have this done.
Although I can't really afford it, I'm thinking of getting some cutting-edge gut microbiome analysis done. This is newly available to me via a local Australian startup, microba.com.
While I'm talking myself into it or out of it, I'd like to know if anyone here has had the same kind of sequencing done already, and/or if you have any thoughts helpful to assessing the value of doing this in pursuit of diagnosing my/our condition. I was told the following:
// Companies that offer less expensive microbiome profiles use a method called 16S rRNA gene sequencing to analyse the microbiome. This method only sequences a small portion of a single gene from bacteria, which acts as a “fingerprint” to identify groups of bacteria. The amount sequenced is about 0.03% of the bacterial genome, or genetic material. Microba uses a method called metagenomics, which sequences all the genes from the microorganisms present, or about 95% of the genetic material. This results in a massive amount of data, which allows us to provide a high resolution (species-level) view of the bacteria, archaea, and even fungi and protists present in the sample. It also allows us to provide information on what these microorganisms may be doing in your gut, such as their ability to digest carbohydrates, protein and fat or to produce essential vitamins. The sequencing costs to generate this data and subsequent data analysis required are much greater than that required for 16S sequencing. Just a few years ago, it would have cost over $1000 to provide a metagenomic analysis of the gut microbiome. We are able to provide this high-resolution test at $350 because the costs of sequencing have come down considerably due to advances in sequencing technology. //
While I'm talking myself into it or out of it, I'd like to know if anyone here has had the same kind of sequencing done already, and/or if you have any thoughts helpful to assessing the value of doing this in pursuit of diagnosing my/our condition. I was told the following:
// Companies that offer less expensive microbiome profiles use a method called 16S rRNA gene sequencing to analyse the microbiome. This method only sequences a small portion of a single gene from bacteria, which acts as a “fingerprint” to identify groups of bacteria. The amount sequenced is about 0.03% of the bacterial genome, or genetic material. Microba uses a method called metagenomics, which sequences all the genes from the microorganisms present, or about 95% of the genetic material. This results in a massive amount of data, which allows us to provide a high resolution (species-level) view of the bacteria, archaea, and even fungi and protists present in the sample. It also allows us to provide information on what these microorganisms may be doing in your gut, such as their ability to digest carbohydrates, protein and fat or to produce essential vitamins. The sequencing costs to generate this data and subsequent data analysis required are much greater than that required for 16S sequencing. Just a few years ago, it would have cost over $1000 to provide a metagenomic analysis of the gut microbiome. We are able to provide this high-resolution test at $350 because the costs of sequencing have come down considerably due to advances in sequencing technology. //
I don't know anything about microba, but I'll look into them.
I did a microbiome test through Ubiome. The report I got back was interesting, but nothing I would consider actionable (also see the additional story below). Even if all of the flora in your gut could be identified, I'm not sure that current science knows enough about how the various species affect your health to be able to make substantive recommendations. On the other hand, it's possible that they could find 1 or more pathogenic species that might lead you to some treatment. That's assuming you can either treat yourself or find a practitioner willing to act based on that report. It's really hard to say. I don't remember whether you are currently seeing a functional medicine doctor. If so, it might be worth checking with him/her on what they think.
Additional story about my experience with uBiome:
They were offering a "special" through a practitioner that I was seeing in which I would pay nothing for 6 kits and they would bill my insurance company. They would take the risk of my insurance company rejecting the claim or offering less than the claimed amount. They sent me 6 kits which I was to use over time and I sent in the first one. uBiome charged my insurance company close to $3,000US and my insurance company inexplicably paid 80% of that (the amount they would cover for an out-of-network lab). I was amazed and pretty annoyed given their refusal to cover some fairly standard lab tests (like homocysteine). The amount uBiome would charge if you ordered a kit directly from them is $399. I don't know why my insurance company paid the ridiculous amount, but I didn't want to alert them to anything. Health insurance in the US is pretty weird. Needless to say, I didn't submit the 5 additional kits.
I did a microbiome test through Ubiome. The report I got back was interesting, but nothing I would consider actionable (also see the additional story below). Even if all of the flora in your gut could be identified, I'm not sure that current science knows enough about how the various species affect your health to be able to make substantive recommendations. On the other hand, it's possible that they could find 1 or more pathogenic species that might lead you to some treatment. That's assuming you can either treat yourself or find a practitioner willing to act based on that report. It's really hard to say. I don't remember whether you are currently seeing a functional medicine doctor. If so, it might be worth checking with him/her on what they think.
Additional story about my experience with uBiome:
They were offering a "special" through a practitioner that I was seeing in which I would pay nothing for 6 kits and they would bill my insurance company. They would take the risk of my insurance company rejecting the claim or offering less than the claimed amount. They sent me 6 kits which I was to use over time and I sent in the first one. uBiome charged my insurance company close to $3,000US and my insurance company inexplicably paid 80% of that (the amount they would cover for an out-of-network lab). I was amazed and pretty annoyed given their refusal to cover some fairly standard lab tests (like homocysteine). The amount uBiome would charge if you ordered a kit directly from them is $399. I don't know why my insurance company paid the ridiculous amount, but I didn't want to alert them to anything. Health insurance in the US is pretty weird. Needless to say, I didn't submit the 5 additional kits.
Thank you for posting about your experiences, and for updating. I am experiencing these tremors with falling asleep and waking, also, and it interferes with my ability to sleep. I am being evaluated for the gene for mold illness susceptibility as well as MSH levels by my functional medicine doctor. I am experiencing also hightened anxiety and lots of cognitive dysfunction. In the past when I've had these tremors I noticed a connection where eating more carbs in a given day would make me more likely to have the tremors that night, but now I get them regardless of carb intake. I also think my B vitamin levels are off, and I may be deficient in one or more, as my homocysteine levels are high. I get negative reactions to several B vitamins, and have been playing around supplementing different amounts of different ones attempting to fix any deficiencies. I'm scheduled for a sleep study in a few weeks.
I do hope that you are able to make further progress toward finding a root cause, and are able to eventually wean off the drugs, since I know you were reluctant to start those.
I do hope that you are able to make further progress toward finding a root cause, and are able to eventually wean off the drugs, since I know you were reluctant to start those.
20 Comments
Hi skboren.
I'm sorry you've joined this club. Interesting that you also initially found a correlation between eating carbs and the sleep vibrations.
Your homocysteine levels could be high due to methylation (B12 and folate-related) issues and other types of inflammation. I'm glad you're seeing a functional medicine doctor who will know what to test for. Typically, checking your MTHFR gene status (including some other genes) and testing for heavy metals would be done. I also had some issues when I first started taking some B vitamin supplements. I don't know which ones affected me the most, but I suspect that B6 and/or folate were the culprits. I've found lots of reports on the Web of people having difficulties with these vitamins. Anxiety is often reported which is something I experienced. In my case, I think this was exacerbated by inadvertently going into ketosis (I went a little overboard on the low-carb diet).
One thing I learned is that vitamin B2 is absolutely essential to many processes. When B2 is low, really bad things can happen especially if you try to increase other B vitamins (B12 and folate) without first making sure you have adequate B2. Increasing B12 and folate will deplete your B2 even further. If your functional doc doesn't suggest it, you might want to ask about doing the NutrEval test which tests your vitamin status among other things. Through that test, I found out that I was low to severely low in just about all of the B vitamins.
If you want to learn more about vitamin metabolism yourself, I'd highly recommend poking around phoenixrising.me on the Web. This is a site which is mostly devoted to people with Chronic Fatigue Syndrome. Many of the people on the forums there have become very knowledgeable about B vitamins and there are numerous threads about methylation. This is where I started to learn about the importance of B2 and was put in touch with a Biochemist who is selling is own transdermal B vitamins. I had some very long discussions with him about building up B2 stores before trying to supplement with B12 or folate. I'll see if I can distill some of that information and post it here.
I also think it's great that you're being tested for mold toxicity.
If you have any questions about anything at all, please feel free to post here. It looks like email notifications are actually working again on this site. Regardless, I tend to check this thread at least once a week.
-b
I'm sorry you've joined this club. Interesting that you also initially found a correlation between eating carbs and the sleep vibrations.
Your homocysteine levels could be high due to methylation (B12 and folate-related) issues and other types of inflammation. I'm glad you're seeing a functional medicine doctor who will know what to test for. Typically, checking your MTHFR gene status (including some other genes) and testing for heavy metals would be done. I also had some issues when I first started taking some B vitamin supplements. I don't know which ones affected me the most, but I suspect that B6 and/or folate were the culprits. I've found lots of reports on the Web of people having difficulties with these vitamins. Anxiety is often reported which is something I experienced. In my case, I think this was exacerbated by inadvertently going into ketosis (I went a little overboard on the low-carb diet).
One thing I learned is that vitamin B2 is absolutely essential to many processes. When B2 is low, really bad things can happen especially if you try to increase other B vitamins (B12 and folate) without first making sure you have adequate B2. Increasing B12 and folate will deplete your B2 even further. If your functional doc doesn't suggest it, you might want to ask about doing the NutrEval test which tests your vitamin status among other things. Through that test, I found out that I was low to severely low in just about all of the B vitamins.
If you want to learn more about vitamin metabolism yourself, I'd highly recommend poking around phoenixrising.me on the Web. This is a site which is mostly devoted to people with Chronic Fatigue Syndrome. Many of the people on the forums there have become very knowledgeable about B vitamins and there are numerous threads about methylation. This is where I started to learn about the importance of B2 and was put in touch with a Biochemist who is selling is own transdermal B vitamins. I had some very long discussions with him about building up B2 stores before trying to supplement with B12 or folate. I'll see if I can distill some of that information and post it here.
I also think it's great that you're being tested for mold toxicity.
If you have any questions about anything at all, please feel free to post here. It looks like email notifications are actually working again on this site. Regardless, I tend to check this thread at least once a week.
-b
bl218, thanks much for the reply.
Yes, my functional medicine doc is focusing on leaky gut and methylation right now. I've been tested for heavy metals and it seems I'm aok in that department. Interesting that you've also had negative reactions to B vitamins and ketosis. B6 in more than small doses gives me neuropathy in fingers and toes, and makes blood pool in my legs. Folate or B12 in any form in more than tiny doses triggers extreme anxiety, like you mention. I'm currently doing tiny doses of those, and experimenting with higher doses of B2 and B3.
I would be very interested in any and all information you'd be willing to share re B2 stores. I have frequent migraines and megadoses of B2 are a known treatment, so I've been cautiously increasing it hoping it might help not just with migraines but with the tremors surrounding sleep, my inability to downregulate my fight-or-flight response, and my worst symptom of all, cognitive decline and memory loss (I am in my mid-30s). The transdermal B vitamins sound very interesting. I've read parts of the Phoenix Rising "B2 I love you" thread.
Trying a keto diet was what initially triggered my spiral into severe health issues in 2010 that I have been dealing with ever since. Keto fixed my IBS but it seemed to create new and far more severe problems, so keto is not my friend. Although I do poorly on a high carb diet, too, obviously.
Something odd I've noted is that I primarily get the sleep tremors when I nap during the day, lately, and not so much at night. I have been taking 500mg l-tryptophan before bed, and I wonder if that makes tremors less likely (maybe due to the boost in serotonin). I try to nap every day in the early afternoon when my toddler naps, to try to make up for lost nighttime sleep. I'll take tryptophan in the early afternoon for a few days and see what that does for the tremors, and report back.
Yes, my functional medicine doc is focusing on leaky gut and methylation right now. I've been tested for heavy metals and it seems I'm aok in that department. Interesting that you've also had negative reactions to B vitamins and ketosis. B6 in more than small doses gives me neuropathy in fingers and toes, and makes blood pool in my legs. Folate or B12 in any form in more than tiny doses triggers extreme anxiety, like you mention. I'm currently doing tiny doses of those, and experimenting with higher doses of B2 and B3.
I would be very interested in any and all information you'd be willing to share re B2 stores. I have frequent migraines and megadoses of B2 are a known treatment, so I've been cautiously increasing it hoping it might help not just with migraines but with the tremors surrounding sleep, my inability to downregulate my fight-or-flight response, and my worst symptom of all, cognitive decline and memory loss (I am in my mid-30s). The transdermal B vitamins sound very interesting. I've read parts of the Phoenix Rising "B2 I love you" thread.
Trying a keto diet was what initially triggered my spiral into severe health issues in 2010 that I have been dealing with ever since. Keto fixed my IBS but it seemed to create new and far more severe problems, so keto is not my friend. Although I do poorly on a high carb diet, too, obviously.
Something odd I've noted is that I primarily get the sleep tremors when I nap during the day, lately, and not so much at night. I have been taking 500mg l-tryptophan before bed, and I wonder if that makes tremors less likely (maybe due to the boost in serotonin). I try to nap every day in the early afternoon when my toddler naps, to try to make up for lost nighttime sleep. I'll take tryptophan in the early afternoon for a few days and see what that does for the tremors, and report back.
Also, thank you for mentioning NutrEval. I have it now on my list of items to discuss next time I see my functional med doc.
Welcome, skboren.
For what it's worth guys I have been in ketosis for 5 months without incident, and the previous time also didn't seem to exacerbate the tremors for me either. As you know initially there can be "keto flu" symptoms, which subside. In our condition, I wonder if slipping into keto is another trigger for fight-or-flight activity that is already hyperactive. So maybe your negative symptoms aren't arising from being in the ketogenic state per se (or from not being in the non-ketogenic state), but rather from the crisis/starvation-mode of first switching over. At any rate, I am soon to switch out, so I'll be tracking whether doing so leads to increased tremor in my case.
I shall have to try building up B2, as when I was experimenting with various supplements something I took worked in a noticeable way (I had/have daytime vibrations as well, and they could very occasionally suddenly stop with a thud, and stay that way for hours). It may have been methylfolate or B12, but I could never verify because it wasn't consistent. But perhaps there's a reason, B2. I also plan to get some Betaine because I was taking HCL with betaine and pepsin, and noticing that having an effect (eg. very dry skin instantly became oily, digestion seemed to improve). But then I got supplements without betaine and I don't notice any effect from them. Apparently betaine helps maintains a proper level of pH in the digestive tract and protects the stomach against bacteria, so in theory it could assist with any visceral hypersensitivity or bacteria-related issues (neurotransmitter production?).
Also skboren, what seemed to bring this on for me was not quite keto in relation to IBS, but I very much was focusing on my diet in relation to my gut, specifically to try to improve my gut health in relation to candida. I was introducing various probiotics such as keffir and kimchi, making my own yoghurt, etc, and may have overdone it in terms of diversity. I also took an NSAID three days in a row probably on an empty stomach (in ignorance, as I hadn't taken them much before), and I feel that was the triggering event, having to do with my gut lining. I actually got quickly nauseated and fainted. Then for a few weeks I had lots of excess adrenal symptoms and a lots of electrical-style symptoms ultimately resolving in this tremor.
For what it's worth guys I have been in ketosis for 5 months without incident, and the previous time also didn't seem to exacerbate the tremors for me either. As you know initially there can be "keto flu" symptoms, which subside. In our condition, I wonder if slipping into keto is another trigger for fight-or-flight activity that is already hyperactive. So maybe your negative symptoms aren't arising from being in the ketogenic state per se (or from not being in the non-ketogenic state), but rather from the crisis/starvation-mode of first switching over. At any rate, I am soon to switch out, so I'll be tracking whether doing so leads to increased tremor in my case.
I shall have to try building up B2, as when I was experimenting with various supplements something I took worked in a noticeable way (I had/have daytime vibrations as well, and they could very occasionally suddenly stop with a thud, and stay that way for hours). It may have been methylfolate or B12, but I could never verify because it wasn't consistent. But perhaps there's a reason, B2. I also plan to get some Betaine because I was taking HCL with betaine and pepsin, and noticing that having an effect (eg. very dry skin instantly became oily, digestion seemed to improve). But then I got supplements without betaine and I don't notice any effect from them. Apparently betaine helps maintains a proper level of pH in the digestive tract and protects the stomach against bacteria, so in theory it could assist with any visceral hypersensitivity or bacteria-related issues (neurotransmitter production?).
Also skboren, what seemed to bring this on for me was not quite keto in relation to IBS, but I very much was focusing on my diet in relation to my gut, specifically to try to improve my gut health in relation to candida. I was introducing various probiotics such as keffir and kimchi, making my own yoghurt, etc, and may have overdone it in terms of diversity. I also took an NSAID three days in a row probably on an empty stomach (in ignorance, as I hadn't taken them much before), and I feel that was the triggering event, having to do with my gut lining. I actually got quickly nauseated and fainted. Then for a few weeks I had lots of excess adrenal symptoms and a lots of electrical-style symptoms ultimately resolving in this tremor.
I'll try to pull together some information on B2. Lots more info on B2 on phoenixrising in addition to the "B2 I Love You" thread. I tried to post the entirety of my email discussion with Greg from B12oils *******, but I guess there's a size limit on comments on this site. I'll condense it and try again. I've done some research on keto and there definitely appears to be a subset of people who can't tolerate it. Many end up with anxiety that lasts a while. I suspect this is due to some sort of nutrient deficiency. In my case, my B vitamins were already low and so I think the anxiety and certain other symptoms happened because I effectively became malnourished. Once I confirm that I've gotten my vitamin status corrected, I might try a keto diet again.
Here are some snippets from my email conversation with Greg, the b12oils guy. In this conversation, he listed some multivitamin supplements he recommends. Sites like this typically don't like posting links to products, so if you're interested in the list, please private message me. You'll note that he has some pretty strong opinions about certain things...
"You can have functional B2 deficiency due to a number of things.
We have found that many people are low on Iodine (lack of iodized salt, don't eat seafood or don't eat Iodine fortified bread).
They are often low on both Selenium and Molybdenum due to where the wheat that they are eating comes from or due to being gluten free.
We recommend
150-300 ug/day Iodine
55-200 ug/day Selenium (but as selenite NOT as selenomethionine).
100-300 ug/day Molybdenum.
You can get all of this in one supplement, several of which I will list below:
[List redacted]"
"Yes, the gluten free is a common problem as people get gut issues and without a skin test go gluten free.
Your experience with the methylB12, 5MTHF is very typical of B2 deficiency. You have to fix this first before you can get the B12 to work, and I have lots and lots of examples in which people didn't get the B2 deficiency fixed, and their OAT data basically didn't change.
On the surface it looks like you probably would be Iodine deficient, and the gluten free may have made you now B1/Se/Mo deficient. NutrEval isn't very good at picking them up, as they all affect B2 levels, and so would track together.
My suggestion would be to try one of the supplements that I will list below. Start with a low dose and build up to a full dose over a month.
You probably would be better with one of the powders, but it is possible to cut the tablets into 4 and use that to obtain a lower dose. After that, introduce the oils at a very low dose to start.
Curiously, not one of the GURU professors that I talk to in B12, has ever experience people "going off" with methyl B12, but then again one sometimes wonders at what they do do.
[List redacted]"
I asked: "Another question that's been bugging me. I have 3 homozygous COMT SNPs and heterozygous for MTHFR 677t. Supposedly, the COMT SNPS make me sensitive to methyl donors and could be responsible for "overmethylating" and might explain (in addition to low B2) the reaction I had to methylated B12 and folate. I believe this is a Yasko theory. Do you subscribe to this theory? If so, how am I ever going to raise my folate levels if I'm sensitive to methyl folate?"
Greg responded: "No I don't.
Yasko totally disregarded your absolute need for methylation in so many other reactions, energy production being one, but formation of iron sulphur proteins being arguably more important. The chemistry though is complex.
Overmethylation is a rubbish concept.
If you are sensitive to 5MTHF or methyl B12 or any of I/Se/Mo?B, you are functionally deficient in the active forms of B2, which means that you are low in any or all of I/Se/Mo/B2.
When you then start to make SAM from 5MTHF or MeB12 you turn on a massive dose of adrenalin and all the symptoms that that brings."
"...your major need for methylation is actually the production of creatine, your emergency back up energy supply is creatine phosphate. 40% of methylation goes to that.
Most mutations in enzymes such as COMT make them less active, and so they need more SAM not less.
In methyl B12 deficiency, your adrenal glands down-regulate the production of SAM, regardless of SNP.
The so called over-methylation reaction is actually turning on a huge production of adrenalin, which you can't control if you are functionally deficient in vitamin B2, which is why I emphasize it sooooooo, much. The deficiency in FAD means that you have defective MAO, which is what has to degrade adrenalin. No MAO then the adrenalin response is way over the top."
"You can have functional B2 deficiency due to a number of things.
We have found that many people are low on Iodine (lack of iodized salt, don't eat seafood or don't eat Iodine fortified bread).
They are often low on both Selenium and Molybdenum due to where the wheat that they are eating comes from or due to being gluten free.
We recommend
150-300 ug/day Iodine
55-200 ug/day Selenium (but as selenite NOT as selenomethionine).
100-300 ug/day Molybdenum.
You can get all of this in one supplement, several of which I will list below:
[List redacted]"
"Yes, the gluten free is a common problem as people get gut issues and without a skin test go gluten free.
Your experience with the methylB12, 5MTHF is very typical of B2 deficiency. You have to fix this first before you can get the B12 to work, and I have lots and lots of examples in which people didn't get the B2 deficiency fixed, and their OAT data basically didn't change.
On the surface it looks like you probably would be Iodine deficient, and the gluten free may have made you now B1/Se/Mo deficient. NutrEval isn't very good at picking them up, as they all affect B2 levels, and so would track together.
My suggestion would be to try one of the supplements that I will list below. Start with a low dose and build up to a full dose over a month.
You probably would be better with one of the powders, but it is possible to cut the tablets into 4 and use that to obtain a lower dose. After that, introduce the oils at a very low dose to start.
Curiously, not one of the GURU professors that I talk to in B12, has ever experience people "going off" with methyl B12, but then again one sometimes wonders at what they do do.
[List redacted]"
I asked: "Another question that's been bugging me. I have 3 homozygous COMT SNPs and heterozygous for MTHFR 677t. Supposedly, the COMT SNPS make me sensitive to methyl donors and could be responsible for "overmethylating" and might explain (in addition to low B2) the reaction I had to methylated B12 and folate. I believe this is a Yasko theory. Do you subscribe to this theory? If so, how am I ever going to raise my folate levels if I'm sensitive to methyl folate?"
Greg responded: "No I don't.
Yasko totally disregarded your absolute need for methylation in so many other reactions, energy production being one, but formation of iron sulphur proteins being arguably more important. The chemistry though is complex.
Overmethylation is a rubbish concept.
If you are sensitive to 5MTHF or methyl B12 or any of I/Se/Mo?B, you are functionally deficient in the active forms of B2, which means that you are low in any or all of I/Se/Mo/B2.
When you then start to make SAM from 5MTHF or MeB12 you turn on a massive dose of adrenalin and all the symptoms that that brings."
"...your major need for methylation is actually the production of creatine, your emergency back up energy supply is creatine phosphate. 40% of methylation goes to that.
Most mutations in enzymes such as COMT make them less active, and so they need more SAM not less.
In methyl B12 deficiency, your adrenal glands down-regulate the production of SAM, regardless of SNP.
The so called over-methylation reaction is actually turning on a huge production of adrenalin, which you can't control if you are functionally deficient in vitamin B2, which is why I emphasize it sooooooo, much. The deficiency in FAD means that you have defective MAO, which is what has to degrade adrenalin. No MAO then the adrenalin response is way over the top."
ricepeg, thanks much. I definitely wonder if transitioning to keto more gradually would've prevented all the madness that followed. I'll be interested to hear how going off keto affects your tremors, as well as your experiences with B2. Awesome that you've been able to make keto work for a long period.
Interesting, ricepeg, your experiences with Betaine. I take Betaine HCl with every meal. I've needed it since 2010 when I apparently wrecked my health with high protein, high fat, low carb. Without it, food sits like a rock in my gut, and eventually emerges looking much like it went in (sorry, TMI). I'll play around with dosage on that and see if it affects anything.
Interesting, too, your observation that neuro symptoms emerged with the addition of ferments. I also had added fermented foods and was trying to eat large amounts, when my neuro issues started. I wonder if the high amounts of glutamine and histamine in fermented foods (and in my case, the significant increase in total dietary amines from eating far more protein than I'd ever eaten before) caused increased intestinal permeability, via the gut microbiome or another mechanism. That dietary change for me also marked the onset of migraine, multiple per week, when prior to that I'd never had a migraine in my life. And B2 megadoses have been shown in literature to be effective for migraine...hmmm...
bl218, thanks for posting the dialogue between you and Greg from b12 oils. Your theory that keto can cause problems due to nutrient deficiency seems probable, because I see quite often now that people who are on keto and having problems will resolve some of them with mineral supplementation. Nobody was talking about a possible need to supplement extra minerals when I did keto in 2010...I wonder if that might've helped. I learned months after trying the diet that I was quite deficient in magnesium. Seems plausible that if it increases adrenal stress (which it seemed to do in my case where it caused extreme fatigue, severe bodywide joint pain, insomnia and neuro symptoms) it could deplete B vitamins as well as minerals.
I've got 2 heterozygous COMT snps and I'm homozygous MAO-A (for the version that makes the enzyme degrade catecholamines more slowly). Greg's comments make me want to keep at it with the B2 and maybe keep B12 and folate low for a while and see if that helps. Maybe I'll get some of the activated B2 (FMN or R5P) as now I'm just taking regular riboflavin, because in theory that should prevent any depletion of cofactors or need for cofactors that the body doesn't have (Selenium, Iodine, Molybdenum, Manganese?). My adrenaline is out of control to the point that lately I've been afraid of having to be institutionalized if I can't get that, and the memory loss/cognitive decline under control. The tiniest things now have me reeling, even going to a store can be too much. I've cut off almost all socialization outside my family, it's pretty sad. Last night I had the tremors all night, and hypnic jerks or myoclonus, and adrenaline surges, and couldn't fall asleep until 5:30. My neurologist thinks sleep deprivation and anxiety may be causing the cognitive/memory issues. Thing is, when my intestines are totally empty, like after a coffee enema or a Vitamin C flush, my anxiety just disappears, completely GONE. So this is absolutely gut-related. I've got a sleep study scheduled for a few weeks from now. I'm sorry I'm kind of all over the place here, and please forgive me if I repeat myself, my formerly perfect memory is so poor.
I was looking over my old notes on symptoms and supplements last night and noted that whenever I've had the tremors in the past it's been when I've been on either high doses of Vitamin C or iron supplements, or both. Vitamin C I believe increases iron absorption. Could be coincidence. But this most recent return of tremors happened after I added really big doses of Vitamin C (because they seemed to help my cognition be a little clearer, brain fog a little less), I mean huge like 30-40 grams/day. Maybe I'm depositing iron in my brain and it causes tremors because it is oxidative, or because it messes with dopamine? Or experiencing herxheimer effects from killing some type of Lyme or other pathogen? Or maybe high dose Vitamin C by increasing conversion of dopamine to norepinephrine is causing tremors somehow? People with Parkinson's I think can get these tremors, and we know they have dopamine issues.
I might agree with Greg re overmethylation. I never could make my experience match what should theoretically happen with methyl donors and methyl-using supplements. I tolerate some methyl donors in huge amounts just fine and others send me over the top with just a sprinkle.
So glad you guys are interested in pursuing solutions to this and making ourselves into guinea pigs.
Interesting, ricepeg, your experiences with Betaine. I take Betaine HCl with every meal. I've needed it since 2010 when I apparently wrecked my health with high protein, high fat, low carb. Without it, food sits like a rock in my gut, and eventually emerges looking much like it went in (sorry, TMI). I'll play around with dosage on that and see if it affects anything.
Interesting, too, your observation that neuro symptoms emerged with the addition of ferments. I also had added fermented foods and was trying to eat large amounts, when my neuro issues started. I wonder if the high amounts of glutamine and histamine in fermented foods (and in my case, the significant increase in total dietary amines from eating far more protein than I'd ever eaten before) caused increased intestinal permeability, via the gut microbiome or another mechanism. That dietary change for me also marked the onset of migraine, multiple per week, when prior to that I'd never had a migraine in my life. And B2 megadoses have been shown in literature to be effective for migraine...hmmm...
bl218, thanks for posting the dialogue between you and Greg from b12 oils. Your theory that keto can cause problems due to nutrient deficiency seems probable, because I see quite often now that people who are on keto and having problems will resolve some of them with mineral supplementation. Nobody was talking about a possible need to supplement extra minerals when I did keto in 2010...I wonder if that might've helped. I learned months after trying the diet that I was quite deficient in magnesium. Seems plausible that if it increases adrenal stress (which it seemed to do in my case where it caused extreme fatigue, severe bodywide joint pain, insomnia and neuro symptoms) it could deplete B vitamins as well as minerals.
I've got 2 heterozygous COMT snps and I'm homozygous MAO-A (for the version that makes the enzyme degrade catecholamines more slowly). Greg's comments make me want to keep at it with the B2 and maybe keep B12 and folate low for a while and see if that helps. Maybe I'll get some of the activated B2 (FMN or R5P) as now I'm just taking regular riboflavin, because in theory that should prevent any depletion of cofactors or need for cofactors that the body doesn't have (Selenium, Iodine, Molybdenum, Manganese?). My adrenaline is out of control to the point that lately I've been afraid of having to be institutionalized if I can't get that, and the memory loss/cognitive decline under control. The tiniest things now have me reeling, even going to a store can be too much. I've cut off almost all socialization outside my family, it's pretty sad. Last night I had the tremors all night, and hypnic jerks or myoclonus, and adrenaline surges, and couldn't fall asleep until 5:30. My neurologist thinks sleep deprivation and anxiety may be causing the cognitive/memory issues. Thing is, when my intestines are totally empty, like after a coffee enema or a Vitamin C flush, my anxiety just disappears, completely GONE. So this is absolutely gut-related. I've got a sleep study scheduled for a few weeks from now. I'm sorry I'm kind of all over the place here, and please forgive me if I repeat myself, my formerly perfect memory is so poor.
I was looking over my old notes on symptoms and supplements last night and noted that whenever I've had the tremors in the past it's been when I've been on either high doses of Vitamin C or iron supplements, or both. Vitamin C I believe increases iron absorption. Could be coincidence. But this most recent return of tremors happened after I added really big doses of Vitamin C (because they seemed to help my cognition be a little clearer, brain fog a little less), I mean huge like 30-40 grams/day. Maybe I'm depositing iron in my brain and it causes tremors because it is oxidative, or because it messes with dopamine? Or experiencing herxheimer effects from killing some type of Lyme or other pathogen? Or maybe high dose Vitamin C by increasing conversion of dopamine to norepinephrine is causing tremors somehow? People with Parkinson's I think can get these tremors, and we know they have dopamine issues.
I might agree with Greg re overmethylation. I never could make my experience match what should theoretically happen with methyl donors and methyl-using supplements. I tolerate some methyl donors in huge amounts just fine and others send me over the top with just a sprinkle.
So glad you guys are interested in pursuing solutions to this and making ourselves into guinea pigs.
Hi skboren,
A lot of what you describe sounds very familiar. I also believe the gut is involved in this whole mess. If you've read this entire thread, you'll see that I also think there's a connection to acid reflux/hiatal hernias. My vibrations seem to increase a bit if I've eaten too close to bedtime.
Even though it'll be difficult with cognitive issues, try to read everything you can on phoenixrising. Lots of discussions from people with SNPs like yours including MAO-A. MAO-A is a rough one. You're probably already doing this, but make sure that your functional medicine doc is aware of all of these symptoms and the connections you've made between certain supplements and exacerbation of your symptoms. I assume your 30-40 grams of Vit C was by IV? I don't think anyone could survive taking that orally. Also, have you done iron blood tests recently?
I had hypnic jerks for quite a while. Even before the vibrations started. Sleep deprivation can definitely cause that as can over-exercising. Magnesium before bed can often help with this although I bet you've already tried this. If you can't get enough Magnesium orally, you could also try Epsom salt baths.
I hope you're functional medicine doc likes to dig in and solve mysteries. I've found that even functional docs are not necessarily all that well-versed in methylation. Not surprising though. As you'll see by reading phoenixrising and my conversation with Greg, it's still a controversial area. My current functional doc admitted to me that he's definitely not an expert.
You mentioned the possibility that this could be due to a Lyme herx. Have you been tested for Lyme? Which tests did you do? All of my Lyme tests (including the specialty labs) have come back negative. And I don't really have enough symptoms that are consistent with Lyme.
I'm going to PM you with a list of Greg's recommended multi vitamins. You can decide for yourself whether any of them sound like something you'd like to try and/or run them by your functional doc.
A lot of what you describe sounds very familiar. I also believe the gut is involved in this whole mess. If you've read this entire thread, you'll see that I also think there's a connection to acid reflux/hiatal hernias. My vibrations seem to increase a bit if I've eaten too close to bedtime.
Even though it'll be difficult with cognitive issues, try to read everything you can on phoenixrising. Lots of discussions from people with SNPs like yours including MAO-A. MAO-A is a rough one. You're probably already doing this, but make sure that your functional medicine doc is aware of all of these symptoms and the connections you've made between certain supplements and exacerbation of your symptoms. I assume your 30-40 grams of Vit C was by IV? I don't think anyone could survive taking that orally. Also, have you done iron blood tests recently?
I had hypnic jerks for quite a while. Even before the vibrations started. Sleep deprivation can definitely cause that as can over-exercising. Magnesium before bed can often help with this although I bet you've already tried this. If you can't get enough Magnesium orally, you could also try Epsom salt baths.
I hope you're functional medicine doc likes to dig in and solve mysteries. I've found that even functional docs are not necessarily all that well-versed in methylation. Not surprising though. As you'll see by reading phoenixrising and my conversation with Greg, it's still a controversial area. My current functional doc admitted to me that he's definitely not an expert.
You mentioned the possibility that this could be due to a Lyme herx. Have you been tested for Lyme? Which tests did you do? All of my Lyme tests (including the specialty labs) have come back negative. And I don't really have enough symptoms that are consistent with Lyme.
I'm going to PM you with a list of Greg's recommended multi vitamins. You can decide for yourself whether any of them sound like something you'd like to try and/or run them by your functional doc.
Really appreciative of recent info here guys. I would characterize my experience as very much tied to excess adrenaline, so I am now officially on B2.
I've been reading through the thread...I'm about 1/3 of the way through, haha. I'm making notes of any things that are mentioned repeatedly, clues/hints as to causes of this and possible solutions. Reflux does come up again and again. If I have reflux I don't notice it, but I've long suspected a hiatal hernia in myself.
I watched a video on YouTube where someone connected riboflavin to MAO-A and reported that taking the active form made him a lot more calm, as if it were helping to break down catecholamines. It also allowed him to take much higher doses of folate than he could prior. He'd been reacting to 100-200mcg folate and after riboflavin was able to tolerate 800+mcg. I've added in molybdenum after reading that the B12 oils guy said iodine, selenium, and molybdenum were factors needed to utilize riboflavin (if I remember right). I was already supplementing iodine and selenium, but I stopped molybdenum a few years ago after having been on it for several years, and the timeline actually makes it possible that removal of molybdenum could've been part of why my tremoring started in the first place, as well as the cognitive decline. It seems like a long shot, but naturally I've added it back in and am terribly hopeful. 250mcg 2x/day so 500mcg total/day.
My 30-40g Vitamin C is oral, believe it or not. I buffer the ascorbic acid with sodium bicarbonate (baking soda) and potassium bicarbonate, add water, let it fizz, and drink it down in 5g doses several times per day. When I take the dose down (because man I'll be honest, it causes bad gas, and it also seems to be corroding my teeth...I can feel this film on them that I hope isn't the enamel wearing away!) I get foggier. I can't correlate the Vitamin C to the tremoring, however.
Iron blood tests, yep. Normal reference range in parentheses:
Ferritin (ng/mL) 68 (13~150)
Iron (ug/dL) 81 (37~145 )
UIBC (µg/dL) 283 (112~347)
TIBC (µg/dL) 364 (149~492 )
Transferrin (mg/dL) 294 (203~362)
Transferrin Saturation (%) 22 (12~45)
My functional med doc is the smartest person I've ever seen for my health stuff since it all started in 2010, so I have high hopes in him. You may be right that he doesn't know tons about methylation, but he's at least looking at my SNPs trying to figure out why I'm not tolerating the vitamins that should be bringing down my homocysteine.
I was tested for Lyme in I believe 2012, negative through the regular doc Western Blot, but had some positive bands through Igenex, however, the overall test was still interpreted as negative. I guess there are a lot of shades of gray. I don't think I have/had Lyme. Maybe some other infection...maybe a coinfection. I got the results back from the HLA testing for mold and I do have one of the haplotypes that indicates mold illness susceptibility, so I'm part of that 24% who are genetically susceptible. However, he also tested my MSH levels which are low in 95% of mold-sick patients, and my level is actually high. So that kinda sounds like nay on the mold theory.
ricepeg, great...it will be interesting to compare notes with riboflavin. I did 33mg 3x/day last week, and this week I hope to tolerate 100mg 3x/day.
I watched a video on YouTube where someone connected riboflavin to MAO-A and reported that taking the active form made him a lot more calm, as if it were helping to break down catecholamines. It also allowed him to take much higher doses of folate than he could prior. He'd been reacting to 100-200mcg folate and after riboflavin was able to tolerate 800+mcg. I've added in molybdenum after reading that the B12 oils guy said iodine, selenium, and molybdenum were factors needed to utilize riboflavin (if I remember right). I was already supplementing iodine and selenium, but I stopped molybdenum a few years ago after having been on it for several years, and the timeline actually makes it possible that removal of molybdenum could've been part of why my tremoring started in the first place, as well as the cognitive decline. It seems like a long shot, but naturally I've added it back in and am terribly hopeful. 250mcg 2x/day so 500mcg total/day.
My 30-40g Vitamin C is oral, believe it or not. I buffer the ascorbic acid with sodium bicarbonate (baking soda) and potassium bicarbonate, add water, let it fizz, and drink it down in 5g doses several times per day. When I take the dose down (because man I'll be honest, it causes bad gas, and it also seems to be corroding my teeth...I can feel this film on them that I hope isn't the enamel wearing away!) I get foggier. I can't correlate the Vitamin C to the tremoring, however.
Iron blood tests, yep. Normal reference range in parentheses:
Ferritin (ng/mL) 68 (13~150)
Iron (ug/dL) 81 (37~145 )
UIBC (µg/dL) 283 (112~347)
TIBC (µg/dL) 364 (149~492 )
Transferrin (mg/dL) 294 (203~362)
Transferrin Saturation (%) 22 (12~45)
My functional med doc is the smartest person I've ever seen for my health stuff since it all started in 2010, so I have high hopes in him. You may be right that he doesn't know tons about methylation, but he's at least looking at my SNPs trying to figure out why I'm not tolerating the vitamins that should be bringing down my homocysteine.
I was tested for Lyme in I believe 2012, negative through the regular doc Western Blot, but had some positive bands through Igenex, however, the overall test was still interpreted as negative. I guess there are a lot of shades of gray. I don't think I have/had Lyme. Maybe some other infection...maybe a coinfection. I got the results back from the HLA testing for mold and I do have one of the haplotypes that indicates mold illness susceptibility, so I'm part of that 24% who are genetically susceptible. However, he also tested my MSH levels which are low in 95% of mold-sick patients, and my level is actually high. So that kinda sounds like nay on the mold theory.
ricepeg, great...it will be interesting to compare notes with riboflavin. I did 33mg 3x/day last week, and this week I hope to tolerate 100mg 3x/day.
A few things come to mind:
MSH is not always low in mold patients. You might want to have him run some of the other tests like c4a and c3a. See the full list here: https://www.survivingmold.com/diagnosis/lab-tests. Unfortunately, it's become difficult to get the c4a test done correctly. Shoemaker wants it done only at National Jewish Labs. Quest used to do this test and send the blood to NJL, but they stopped a while back because the prep was difficult. The blood has to be frozen immediately and shipped in dry ice. I don't know where you're located, but I've heard that some Quest labs in California will still do this test. The TGFBeta1 test is also pretty important. This can be done through Labcorp.
Your iron numbers look fine.
It's pretty easy to get checked out for a hiatal hernia. Just see a gastroenterologist and have an upper endoscopy. My father had a hiatal hernia and a lower esophageal ring (also called a Shotsky ring) which is believed to be due to reflux. I also have a Shotsky ring. However my father never suffered from reflux. There is supposedly such a thing as "silent reflux."
If you're concerned about what oral vitamin C is doing to you, you might want to consider finding a practitioner that does IV therapy. My functional doc does this. I did a few rounds of high-dose vitamin C (35 grams) plus glutathione. This didn't help my vibrations at all, but I also didn't get a cold or the flu this winter when all of my co-workers were dropping like flies. And for a while, this seemed to help my energy levels although that seemed to taper off after a while.
For B-2, you might want to try a sublingual active form of B2. I used Source Naturals Co-Enzymated B-2 for a while before attempting B12/Folate again. Greg fomr b12oils recommends taking enough so that your urine consistently stays a green/bright yellow color.
MSH is not always low in mold patients. You might want to have him run some of the other tests like c4a and c3a. See the full list here: https://www.survivingmold.com/diagnosis/lab-tests. Unfortunately, it's become difficult to get the c4a test done correctly. Shoemaker wants it done only at National Jewish Labs. Quest used to do this test and send the blood to NJL, but they stopped a while back because the prep was difficult. The blood has to be frozen immediately and shipped in dry ice. I don't know where you're located, but I've heard that some Quest labs in California will still do this test. The TGFBeta1 test is also pretty important. This can be done through Labcorp.
Your iron numbers look fine.
It's pretty easy to get checked out for a hiatal hernia. Just see a gastroenterologist and have an upper endoscopy. My father had a hiatal hernia and a lower esophageal ring (also called a Shotsky ring) which is believed to be due to reflux. I also have a Shotsky ring. However my father never suffered from reflux. There is supposedly such a thing as "silent reflux."
If you're concerned about what oral vitamin C is doing to you, you might want to consider finding a practitioner that does IV therapy. My functional doc does this. I did a few rounds of high-dose vitamin C (35 grams) plus glutathione. This didn't help my vibrations at all, but I also didn't get a cold or the flu this winter when all of my co-workers were dropping like flies. And for a while, this seemed to help my energy levels although that seemed to taper off after a while.
For B-2, you might want to try a sublingual active form of B2. I used Source Naturals Co-Enzymated B-2 for a while before attempting B12/Folate again. Greg fomr b12oils recommends taking enough so that your urine consistently stays a green/bright yellow color.
I should also mention that Greg was clear that you also need to take the precursors for B-2 like iodine, molybdenum, etc.
bl218, thanks much. I'll ask my functional med guy about running the other mold illness labs. Fortunately, he is versed in the whole Shoemaker thing and I trust him.
I had a HIDA scan not long ago (for liver/gallbladder area pain and itching) which came back normal and primary care doc said I could see a gastroenterologist if I wanted. I wasn't going to, but now I'm considering it because you've made me want to explore possible hiatal hernia and/or reflux. Last night I had zero tremoring! What was different? Two things. One, I've laid off the super high dose Vitamin C over the past couple days; I only took about 7 grams yesterday instead of the normal 30-something, and so the usual ridiculous amount of stomach rumbling, bloating, and gas was significantly reduced. And two, yesterday evening I had only a small bowl of sweet potato for dinner, earlier than we usually eat, around 6pm. We typically eat around 7-7:30 and usually protein/carb/veg together which is a lot more taxing on the digestive system. I'm liking how you're thinking here with the digestive stuff (hiatal hernia, reflux). Possible irritation of the vagal nerve by digestive disturbances, which is maybe overly sensitive due to elevated catecholamines?...
I would love to do IV Vitamin C.
I'm taking those B2 cofactors (iodine, selenium, molybdenum). I was getting some pretty bad depression taking 100mg of regular riboflavin several times a day, so I dropped it back to 25mg 3x/day and am doing much better. Possibly B2's ability to help break down catecholamines was making my serotonin and/or dopamine too low...but that's just a guess. I've exhausted June's budget for health-related stuff so I have to wait until July to order my active B2, but it's on my list.
I had a HIDA scan not long ago (for liver/gallbladder area pain and itching) which came back normal and primary care doc said I could see a gastroenterologist if I wanted. I wasn't going to, but now I'm considering it because you've made me want to explore possible hiatal hernia and/or reflux. Last night I had zero tremoring! What was different? Two things. One, I've laid off the super high dose Vitamin C over the past couple days; I only took about 7 grams yesterday instead of the normal 30-something, and so the usual ridiculous amount of stomach rumbling, bloating, and gas was significantly reduced. And two, yesterday evening I had only a small bowl of sweet potato for dinner, earlier than we usually eat, around 6pm. We typically eat around 7-7:30 and usually protein/carb/veg together which is a lot more taxing on the digestive system. I'm liking how you're thinking here with the digestive stuff (hiatal hernia, reflux). Possible irritation of the vagal nerve by digestive disturbances, which is maybe overly sensitive due to elevated catecholamines?...
I would love to do IV Vitamin C.
I'm taking those B2 cofactors (iodine, selenium, molybdenum). I was getting some pretty bad depression taking 100mg of regular riboflavin several times a day, so I dropped it back to 25mg 3x/day and am doing much better. Possibly B2's ability to help break down catecholamines was making my serotonin and/or dopamine too low...but that's just a guess. I've exhausted June's budget for health-related stuff so I have to wait until July to order my active B2, but it's on my list.
I'm still reading through older comments in this thread. I should mention that, like others, I can also make the tremors stop by taking deep breaths...as if they are due to a problem with poor oxygenation. How that is related, if at all, to the digestive probable causes like hiatal hernia and reflux, I don't know.
Quick update. Recent comments are very helpful. I've had very significant relief for a few days straight. Things were getting worse just prior, such that the switch feels profound. The reason is either going off keto, or going on B2/selenium/molybdenum. I think the latter. I will probably go back on keto soon for 1 week before vacation, so that might be instructive. Funnily enough, I was taking B2 for a few days, and thought I'd better swing back around to experimenting with NAC, as NAC was among the contenders for what might have helped me in the past. I experienced the aforementioned relief, attributing it to the NAC more than the B2. So I got to thinking–Is there anything else in this product (Doctor's Best NAC Detox Regulators)? Lo and behold, the NAC is stacked with Selenium and Molybdenum. These meant nothing to me prior to their recent mention here, but now, considering that and my apparent relief, they sure have got my attention!
skboren, my theory on the deep-breath thing is that it's not an oxygenation issue. The deep breathing is soothing the vagus nerve in some way. Maybe by moving the diaphragm sufficiently to take pressure off of whatever is irritating the vagus nerve. I've also noticed some emotional issues with B2. For example, on occasion I think it's made me fatigued maybe bordering on depression. There is no doubt in my mind that this thing is at least partially due to digestive issues. If I overeat or eat too late in the evening, the vibrations are worse and more frequent. If I eat sugary things, I get the same result. Unfortunately, nothing I do so far has completely relieved the vibrations.
Anyway, couple the digestive issues with some sort of hypersensitivity (maybe due to a nutritional imbalance) and voila.
Anyway, couple the digestive issues with some sort of hypersensitivity (maybe due to a nutritional imbalance) and voila.
ricepeg, So great that you've gotten improvement, either from keto or from B2/Se/Mo. I'll look forward to hearing more and hope that the significant relief continues! Really interesting, your experience with the NAC/Se/Mo combo and the connection you made that it might have been one of the minerals rather than the NAC that helped before.
This is kind of Twilight Zone in it's serendipity, but I was looking through my (8 years of) old notes of symptoms and supplements, etc., and discovered that when my cognition improved for part of last summer, I had assumed it was because I was taking pretty large doses of Vitamin C, but the other thing that changed during that time was that I was taking the exact same combo NAC/Se/Mo, and when the bottle ran out, I didn't reorder, because I didn't make any connection at the time that it may have been helping. I was not experiencing the sleep tremors during that time, either. I was also taking a different isolated Molybdenum during the couple of years from 2013-early 2015 when I was doing better in general, health wise. I stopped shortly before the sleep tremors initially began in fall of 2015. And my cognitive issues got severe in winter 2015, also after I'd stopped molybdenum. More recently I've been taking selenium for months without improvement, but the addition of the Mo and B2 has really been helping at least the cognition...though I still have the tremors.
I've recently joined a group on Facebook for people healing from vitamin B6 toxicity. I've made myself B6 toxic a couple of times (because I'm stupid like that) by supplementing pyridoxine. It's a bit tricky because B6 deficiency and toxicity symptoms are basically the same. Some sources say toxicity of B6 is actually paradoxical deficiency where the B6 builds up in the bloodstream (often when people have been supplementing the inactive form of B6, pyridoxine) because the cofactors for the enzymes needed to use B6 in the body are missing or levels are insufficient (among them, B2 and it's mineral cofactors!). I don't know whether that's true, and I've been too scared to take the P5P (active B6) that I bought for fear of making myself worse. I recently realized that my progressing limb muscle weakness and paresthesias, as well as the sleep tremors, may well be from my trying to force B6 (pyridoxine) over the past couple months in order to lower my homocysteine. It's a slow condition to heal so it'll be months before I can report whether discontinuing the B6 has had any effect. B6 does so many things in the body, and it plays a significant role in nerve function, so it doesn't seem too crazy to think that it (or it's lack) could disrupt vagus nerve function or cause reflux. But here's the thing: LOTS Of people in the B6 toxicity group have these sleep tremors. It's eerie. But people are taking months to years in order to heal, so it's not the type of thing you can just say, "Ok, I won't take B6 for a month and if the sleep tremors persist, then supplemental B6 wasn't the issue.) What is really unclear is the role of P5P, specifically whether P5P can cause or cure the B6 toxicity (or paradoxical deficiency?). Some people claim to have become toxic on P5P, but others claim P5P can't cause the toxicity issues. I'm just not brave enough quite yet to make myself a guinea pig, although I'm SOOO very curious. For now I'm just continuing B2/Se/Mo and not taking any B6.
This is kind of Twilight Zone in it's serendipity, but I was looking through my (8 years of) old notes of symptoms and supplements, etc., and discovered that when my cognition improved for part of last summer, I had assumed it was because I was taking pretty large doses of Vitamin C, but the other thing that changed during that time was that I was taking the exact same combo NAC/Se/Mo, and when the bottle ran out, I didn't reorder, because I didn't make any connection at the time that it may have been helping. I was not experiencing the sleep tremors during that time, either. I was also taking a different isolated Molybdenum during the couple of years from 2013-early 2015 when I was doing better in general, health wise. I stopped shortly before the sleep tremors initially began in fall of 2015. And my cognitive issues got severe in winter 2015, also after I'd stopped molybdenum. More recently I've been taking selenium for months without improvement, but the addition of the Mo and B2 has really been helping at least the cognition...though I still have the tremors.
I've recently joined a group on Facebook for people healing from vitamin B6 toxicity. I've made myself B6 toxic a couple of times (because I'm stupid like that) by supplementing pyridoxine. It's a bit tricky because B6 deficiency and toxicity symptoms are basically the same. Some sources say toxicity of B6 is actually paradoxical deficiency where the B6 builds up in the bloodstream (often when people have been supplementing the inactive form of B6, pyridoxine) because the cofactors for the enzymes needed to use B6 in the body are missing or levels are insufficient (among them, B2 and it's mineral cofactors!). I don't know whether that's true, and I've been too scared to take the P5P (active B6) that I bought for fear of making myself worse. I recently realized that my progressing limb muscle weakness and paresthesias, as well as the sleep tremors, may well be from my trying to force B6 (pyridoxine) over the past couple months in order to lower my homocysteine. It's a slow condition to heal so it'll be months before I can report whether discontinuing the B6 has had any effect. B6 does so many things in the body, and it plays a significant role in nerve function, so it doesn't seem too crazy to think that it (or it's lack) could disrupt vagus nerve function or cause reflux. But here's the thing: LOTS Of people in the B6 toxicity group have these sleep tremors. It's eerie. But people are taking months to years in order to heal, so it's not the type of thing you can just say, "Ok, I won't take B6 for a month and if the sleep tremors persist, then supplemental B6 wasn't the issue.) What is really unclear is the role of P5P, specifically whether P5P can cause or cure the B6 toxicity (or paradoxical deficiency?). Some people claim to have become toxic on P5P, but others claim P5P can't cause the toxicity issues. I'm just not brave enough quite yet to make myself a guinea pig, although I'm SOOO very curious. For now I'm just continuing B2/Se/Mo and not taking any B6.
I should also report that B2 seems to have allowed me to take small amounts of folate and B12 without my usual negative reaction. This is very exciting to me. (Maybe I've already said that...if so I apologise.)
My sleep tremors were super bad night before last after I'd eaten a lot more carbs than usual the previous evening. I ate a whole package of Trader Joe's rice mochi snacks which I'm afraid to look at how many carbs it has, lol. I also had a dream where I was drowning in a swimming pool and woke up with the suffocating feeling, gasping for air.
Just for data purposes, I am a female in my mid-thirties and weigh 120 lbs. I have Ehlers Danlos syndrome (diagnosed in 2016) which means my connective tissues are too lax, and I have craniocervical instability on MRI where the dens of my C2 vertebrae transiently compresses my brain stem and spinal cord (due to lax spinal cord ligaments), so it's possible I have apnea due to brainstem compression, or due to throat muscle weakness from spinal cord damage. My blood pressure runs low, generally, and has all my life. My sleep tremors first started in 2012, but they started being a chronic, debilitating issue during the second half of a pregnancy in 2015, which is also when I accrued some mild spinal cord damage due, I think, to a combo of craniocervical instability and B6 toxicity. So I have mild muscle weakness in all four limbs and in my tongue/throat/soft palate, but it's not something that's noticeable to others around me...only to me. I went for many months without the sleep tremors in 2016 through early 2018. They only started back up again a few months ago. I used to think they went away because I adjusted my bed so that I sleep on a slight incline (and that does actually seem to help some, generally), but they returned all while I've slept on the same bed in the same position...so there is another factor at play.
bl218, you're making sense, saying that it's not an oxygenation issue but a vagus nerve issue. Re the Vitamin B2 causing fatigue/depression...I have that exact reaction to it, also, when my doses is too high. I think when the dose is too high it breaks down catecholamines too rapidly. I am taking 25mg of regular cheap riboflavin 3 times a day with meals. If I go up even just to 33mg per meal, I get the fatigue/depression. How much are you taking and how often, and which form?
I should also report that in the couple of weeks since adding B2 and friends, I have not had a single migraine! I usually average 2 migraines per week. I have in the past taken more than four times this dose, but only once per day, and had no such positive effects. So if anyone out there gets migraines, it might be a clue as to need for B2 etc.
You guys are gonna have me kicked off here for making too long of replies!
My sleep tremors were super bad night before last after I'd eaten a lot more carbs than usual the previous evening. I ate a whole package of Trader Joe's rice mochi snacks which I'm afraid to look at how many carbs it has, lol. I also had a dream where I was drowning in a swimming pool and woke up with the suffocating feeling, gasping for air.
Just for data purposes, I am a female in my mid-thirties and weigh 120 lbs. I have Ehlers Danlos syndrome (diagnosed in 2016) which means my connective tissues are too lax, and I have craniocervical instability on MRI where the dens of my C2 vertebrae transiently compresses my brain stem and spinal cord (due to lax spinal cord ligaments), so it's possible I have apnea due to brainstem compression, or due to throat muscle weakness from spinal cord damage. My blood pressure runs low, generally, and has all my life. My sleep tremors first started in 2012, but they started being a chronic, debilitating issue during the second half of a pregnancy in 2015, which is also when I accrued some mild spinal cord damage due, I think, to a combo of craniocervical instability and B6 toxicity. So I have mild muscle weakness in all four limbs and in my tongue/throat/soft palate, but it's not something that's noticeable to others around me...only to me. I went for many months without the sleep tremors in 2016 through early 2018. They only started back up again a few months ago. I used to think they went away because I adjusted my bed so that I sleep on a slight incline (and that does actually seem to help some, generally), but they returned all while I've slept on the same bed in the same position...so there is another factor at play.
bl218, you're making sense, saying that it's not an oxygenation issue but a vagus nerve issue. Re the Vitamin B2 causing fatigue/depression...I have that exact reaction to it, also, when my doses is too high. I think when the dose is too high it breaks down catecholamines too rapidly. I am taking 25mg of regular cheap riboflavin 3 times a day with meals. If I go up even just to 33mg per meal, I get the fatigue/depression. How much are you taking and how often, and which form?
I should also report that in the couple of weeks since adding B2 and friends, I have not had a single migraine! I usually average 2 migraines per week. I have in the past taken more than four times this dose, but only once per day, and had no such positive effects. So if anyone out there gets migraines, it might be a clue as to need for B2 etc.
You guys are gonna have me kicked off here for making too long of replies!
Don't worry about the length of your replies. Lots of good information there. A few things (in no particular order):
I had also overdosed on B6 when I took loads of the stuff to address some peripheral neuropathies in my arms. (Note that my vibrations started years before I started supplementing with B6 so B6 toxicity is definitely not the cause. Although I suppose B6 *deficiency* could still be a contributing factor.) It ended up making it worse and may also have kicked off my anxiety attacks which lasted for months. I had my B6 levels tested via blood tests and they were twice the upper limit. I was also taking a lot of pyridoxine which clearly wasn't being converted to P5P. It wasn't until many months later that I did the NutrEval and found out that just about all of my B vitamins were low to extremely low.
The only B6 I take right now is in the Life Extension Mix Powder. One scoop contains about 35mg of P5P and a small amount of pyridoxine. I take 1-2 scoops per day so that's 35-70ish mg of P5P/day. Note that before I started on the mix powder, I was taking 18mg of FMN (co-enzymated form of B2) sublingually for a few weeks. I had not yet started taking any of the co-factors which may have been a mistake. So you might want to consider taking the co-enzymated form to see what happens.
Unfortunately, nothing I've done yet has had an effect on the vibrations. But as you've learned in your FB group, it could take a long time.
I can't stress enough that without a test like the NutrEval, you're shooting in the dark as to what your nutritional deficiencies might be. I think I mentioned that I'm going to do another NutrEval test in September. My functional doc and I agreed that it would be a fine idea for me to take some "time off" from IVs and tests and such. So I'm going to take the summer off. I'm going to try to be somewhat consistent about supplementation with the LE Mix Powder and my diet. Unfortunately, I'm finding it difficult to stay on a healthy diet because the Amitriptylene really makes you crave carbs...
Definitely a link between carbs and increased vibrations for me. Maybe we're not digesting carbs well for some reason which causes additional reflux which causes the vibrations?
If the vibrations are caused by some kind of visceral hypersensitivity, I suspect that this kind of "overactive nervous system" is brought on by any number of root causes. My guess is that we all don't have the same condition.
I had also overdosed on B6 when I took loads of the stuff to address some peripheral neuropathies in my arms. (Note that my vibrations started years before I started supplementing with B6 so B6 toxicity is definitely not the cause. Although I suppose B6 *deficiency* could still be a contributing factor.) It ended up making it worse and may also have kicked off my anxiety attacks which lasted for months. I had my B6 levels tested via blood tests and they were twice the upper limit. I was also taking a lot of pyridoxine which clearly wasn't being converted to P5P. It wasn't until many months later that I did the NutrEval and found out that just about all of my B vitamins were low to extremely low.
The only B6 I take right now is in the Life Extension Mix Powder. One scoop contains about 35mg of P5P and a small amount of pyridoxine. I take 1-2 scoops per day so that's 35-70ish mg of P5P/day. Note that before I started on the mix powder, I was taking 18mg of FMN (co-enzymated form of B2) sublingually for a few weeks. I had not yet started taking any of the co-factors which may have been a mistake. So you might want to consider taking the co-enzymated form to see what happens.
Unfortunately, nothing I've done yet has had an effect on the vibrations. But as you've learned in your FB group, it could take a long time.
I can't stress enough that without a test like the NutrEval, you're shooting in the dark as to what your nutritional deficiencies might be. I think I mentioned that I'm going to do another NutrEval test in September. My functional doc and I agreed that it would be a fine idea for me to take some "time off" from IVs and tests and such. So I'm going to take the summer off. I'm going to try to be somewhat consistent about supplementation with the LE Mix Powder and my diet. Unfortunately, I'm finding it difficult to stay on a healthy diet because the Amitriptylene really makes you crave carbs...
Definitely a link between carbs and increased vibrations for me. Maybe we're not digesting carbs well for some reason which causes additional reflux which causes the vibrations?
If the vibrations are caused by some kind of visceral hypersensitivity, I suspect that this kind of "overactive nervous system" is brought on by any number of root causes. My guess is that we all don't have the same condition.
Oh yeah, forgot to mention. The waking up breathless could of course be due to sleep apnea. But you also may have seen a post of mine a while back about "psuedo-dyspnea." This practitioner thinks that it's possible that one of the causes is hypersensitivity due to acid reflux. https://www.hannasaadah.com/blog/medical/false-shortness-of-breaht-pseudo-dyspnea-december-12/ Not sure this is particularly helpful. But it is interesting
Progress report: I've been taking 20mg amitriptilene and 200 mg gabapentin which is greatly reducing the vibrations and allowing me to sleep a bit better with only mild side-effects such as a little bit of a hangover the next morning. I suspect that if I upped the dose of either drug, it would help even more, but I'm trying to avoid that. Those are both relatively low doses for each of those drugs. 200mg of gabapentin is an extremely low dose when you consider that fibromyalgia patients are given up to 3,200mg. I also find that making sure that I don't eat too much or too late for dinner helps. This reinforces the theory that this is some sort of digestive issue (visceral hypersensitivity). In any case, either due to the reduced vibrations or the drugs themselves, my anxiety level is much lower.
I had given up and tried to just take a break from trying. I went carb free for a while and saw excellent results. Now I started having issues with gout and put carbs back in and have problems again. I even started having issues with brain cloud during the day. There’s got to be a happy medium to revert to. I was tested for metals a couple times. Never found anything significant.
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Hi Toby. Good to hear from you again though sorry about your relapse. So interesting that carbs seem to be the trigger for you. Wish I knew more about biochemistry. At least that's something to concentrate on. On thing I recently learned (through the new functional doc I'm seeing) is that I'm low to extremely low in many of the B vitamins any of which can cause neurological problems. In order to address the mold diagnosis I've actually been living in a hotel (brand-new, very clean) for the last month to see if things improve. Unfortunately, not much improvement. Don't know if I posted about this before (too lazy to look back in this thread), but I saw a gastroenterologist who had actually heard of this symptom and though it was something called "visceral hypersensitivity" which occurs due to even a little bit of stomach acid reaching the esophagus. He prescribed low-dose gabapentin. That seems to take the edge off a bit, but it's not solving the problem. I also feel like the symptoms are worse depending on what I eat, but nothing as obvious as your experience with carbs. But I wonder whether this is indeed a digestive problem as opposed to a biochemical problem.
When I tried going very low carb I got into ketosis (as confirmed by some blood tests), but ended up having panic attacks. I don't know whether the panic attacks were due to being in ketosis (I found at least one case study showing that some people react to very low carb diets this way), my vitamin/nutrient status, or a combination.
Anyway, nice to hear from you even under the circumstances.
-b
When I tried going very low carb I got into ketosis (as confirmed by some blood tests), but ended up having panic attacks. I don't know whether the panic attacks were due to being in ketosis (I found at least one case study showing that some people react to very low carb diets this way), my vitamin/nutrient status, or a combination.
Anyway, nice to hear from you even under the circumstances.
-b
U Sound like me Toby1101 u had stiff face feels like it from the jaw muscles as when it bad they click i also have tons of other symptoms including high red blood counts i find food seems to make my symptoms worse some of the other symptoms i had was acid reflux, my stomach empties slow (gastroparesis) head tension,burning eyes and mouth, heart palps, back sore, blurry vision,brain fog,now musvle weakness in arms and legs and short of breath,left ear ringing.burning in legs and arms like lava running thru my veins or some type of hang over i'm sure there is more too i also found high doses of vitamin d helped me even tho my levels or in range i get them all when i come off it i been taking 50,000 iu in one dose for 4 years i got to take it every 2 weeks or the symptoms would come back altho the vitamin d is not working like it used to now besides acid reflux and gastroparesis they said i had fibromyalgia and anxiety and also all my red blood counts are high they said it can be caused by a blood cancer that is called Polycythemia vera which is slow growing live many years with it and they take blood from u to treat it have not seen the blood doctor yet for it anyways like to hear back from you
Interesting post here regarding "false dyspnea" (the feeling that you aren't getting a full breath) and its connection to reflux. I've often felt like I wasn't getting a full breath during sleep and sometimes when awake, but lying down. And I've never felt that sensation during exercise.
http://www.hannasaadah.com/blog/medical/false-shortness-of-breaht-pseudo-dyspnea-december-12/
http://www.hannasaadah.com/blog/medical/false-shortness-of-breaht-pseudo-dyspnea-december-12/
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Wondering if anyone is still monitoring this thread and how you're doing? I'm still pursuing treatment for heavy metals and mold. Not much improvement at this point though.
Merry Christmas to everyone searching for answers. May you find them in the New Year!
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Yes, Merry Christmas.
I may have found a partial answer, or at least an important clue. With the use of an app (SnoreLab) to record and analyze snoring, I've been able to greatly understand my significant snoring levels, patterns and durations (basically all night long), which I'm told has gone on for years—and reduce them to zero for the past two weeks. Literally, from levels beyond 100 on this app, to a consistent 0.
I raised my bedhead high. I know that you've also done that, and perhaps others here, but if I wasn't also recording my snoring, I would have quickly concluded that it achieved nothing, given my goal of eliminating the vibrations.
But because the effect was so immediate and dramatic, I can only conclude that I've had a significant nocturnal problem with reflux for years that I wasn't aware of, and that it caused collapsing airways (probably via some connection to asthma, which I had as a child and was recently told I still have).
What is significant about all this from my point of view is that I now have apparently stopped my apneic events. You know, the things that likely cause nocturnal adrenaline storms, which likely causes my vibrations. Or perhaps the adrenaline is from adrenal fatigue and causes the reflux, which irritates the vagus nerve, which reacts in tremor and further fight-or-flight responses.
I've inferred from past snoring patterns that the apnea occurred when I would abruptly go from loud to quiet, many times a night (and basically wake up with the adrenaline reflex, and roll over). The very first night I raised my behead, however, I had a novel snoring pattern that was starkly constant, with no high-low iterations at all. From the second night I was just suddenly not even a snorer anymore. Snoring only returned moderately on one occasion, after eating a double serve of lasagne for dinner, which only confirms the acid reflux theory.
Meanwhile, just prior to all that I had experienced more waking events where I felt flooded with adrenaline. I had a daytime sleep and somebody innocently opened the door which shocked me awake, and, boom—hello tremor.
So my working theory is that in my case, a stress-related sleep disorder, akin to adrenal fatigue has arisen in response to many years of reflux-driven apnea and poor quality sleep. As a kind of conditioning, I would not expect immediate recovery just by stopping the apnea. But I would anticipate a gradual improvement from that point on, due to finding an exist point from what had been a vicious cycle. Time will tell.
In case I'm mistaken about the raised bedhead, I just want to note here that I still know what I did the same night to end up a non-snorer. In that case it will have been some major massage release work I did under the sternum. It was sore the next day and feels improved to this day. Apparently hiatus hernias can be fixed in this way. But I think it's the bedhead.
Being more aware of this issue has made me more attuned to a general reflux feeling during daytime. I am therefore going to see if I can improve that also. But I suspect adrenal fatigue underlying that, so I'm attending to that too. If I can come by the funds, I'll probably go with an alternative practitioner there.
I know this all isn't exactly sharp and to the point, but I would impress upon others that the snoring fix has been dramatic, and tantalizes me by suggesting a clearer pathway to possible recovery. Perhaps my situation is not unlike others here, so even if you're on top of your apnea via CPAP, you might wish to raise your bedhead, avoid tomatoes like the plague, grab a snoring app, etc.
I may have found a partial answer, or at least an important clue. With the use of an app (SnoreLab) to record and analyze snoring, I've been able to greatly understand my significant snoring levels, patterns and durations (basically all night long), which I'm told has gone on for years—and reduce them to zero for the past two weeks. Literally, from levels beyond 100 on this app, to a consistent 0.
I raised my bedhead high. I know that you've also done that, and perhaps others here, but if I wasn't also recording my snoring, I would have quickly concluded that it achieved nothing, given my goal of eliminating the vibrations.
But because the effect was so immediate and dramatic, I can only conclude that I've had a significant nocturnal problem with reflux for years that I wasn't aware of, and that it caused collapsing airways (probably via some connection to asthma, which I had as a child and was recently told I still have).
What is significant about all this from my point of view is that I now have apparently stopped my apneic events. You know, the things that likely cause nocturnal adrenaline storms, which likely causes my vibrations. Or perhaps the adrenaline is from adrenal fatigue and causes the reflux, which irritates the vagus nerve, which reacts in tremor and further fight-or-flight responses.
I've inferred from past snoring patterns that the apnea occurred when I would abruptly go from loud to quiet, many times a night (and basically wake up with the adrenaline reflex, and roll over). The very first night I raised my behead, however, I had a novel snoring pattern that was starkly constant, with no high-low iterations at all. From the second night I was just suddenly not even a snorer anymore. Snoring only returned moderately on one occasion, after eating a double serve of lasagne for dinner, which only confirms the acid reflux theory.
Meanwhile, just prior to all that I had experienced more waking events where I felt flooded with adrenaline. I had a daytime sleep and somebody innocently opened the door which shocked me awake, and, boom—hello tremor.
So my working theory is that in my case, a stress-related sleep disorder, akin to adrenal fatigue has arisen in response to many years of reflux-driven apnea and poor quality sleep. As a kind of conditioning, I would not expect immediate recovery just by stopping the apnea. But I would anticipate a gradual improvement from that point on, due to finding an exist point from what had been a vicious cycle. Time will tell.
In case I'm mistaken about the raised bedhead, I just want to note here that I still know what I did the same night to end up a non-snorer. In that case it will have been some major massage release work I did under the sternum. It was sore the next day and feels improved to this day. Apparently hiatus hernias can be fixed in this way. But I think it's the bedhead.
Being more aware of this issue has made me more attuned to a general reflux feeling during daytime. I am therefore going to see if I can improve that also. But I suspect adrenal fatigue underlying that, so I'm attending to that too. If I can come by the funds, I'll probably go with an alternative practitioner there.
I know this all isn't exactly sharp and to the point, but I would impress upon others that the snoring fix has been dramatic, and tantalizes me by suggesting a clearer pathway to possible recovery. Perhaps my situation is not unlike others here, so even if you're on top of your apnea via CPAP, you might wish to raise your bedhead, avoid tomatoes like the plague, grab a snoring app, etc.
I will add that I recall reading here that at least one of us didn't recover from vibrations after having successful CPAP, so I guess my point is that it's possible that in this syndrome the vibrations are yet perpetuated by the reflux, not the awakening reflex per se.
Excellent information. You and I both seem to be centering in on reflux as at least one of the causes of this problem.
Do you still plan to try CPAP? Some people experience a reduction in reflux because the pressure helps keep the reflux down.
You might want to see a gastroenterologist to do a manometry and pH study to look at how your lower esophageal sphincter is functioning and to get a better idea of when the reflux events occur. This is what I just did. In my case, there was no correlation between reflux events and vibration events during the night. However, the report did mention that overall, the total number of reflux events was "high normal" over the course of the 24 hour study. The manometry test also showed a well-functioning LES. However, the gastro still thinks that this is a "classic" case of "visceral hypersensitivity" which I assume means that even though the reflux didn't go far enough up my esophagus to hit the sensor, some amount of reflux could still be irritating something below that (once again, perhaps the vagus nerve). Reminder that I have a hiatal hernia and a lower esophageal ring which could be part of the problem. The treatment for this according to the gastro is some combination of cognitive behavioral therapy (I don't see how this could possibly work), low-dosage acid suppressors, low-dosage neuromodulation drugs such as gabapentin. I'm not thrilled with either of the drug therapies, but I'll probably try it anyway for additional data points if nothing else. My follow-up appointment is at the end of January and I'll report back on that.
Additional info:
I also tried raising the head of my bed, but it didn't do much for me. Maybe I'll try that again.
I'm even more convinced that reflux/gastro issues are at the root of this problem. I overindulged on Christmas eve and had one of my worst nights ever.
I failed CPAP therapy (and now use an oral dental appliance) because I was getting air in my stomach. My theory on that is that the hypersensitivity was causing me to involuntarily swallow during the night which caused me to swallow the additionally-pressurized air. I recently bought a different CPAP mask and I might try this again setting my CPAP machine to a lower max pressure.
I'm seeing a new functional medicine doc who is actually local (and accepts insurance!). He is familiar with mold toxicity and wanted to run an additional urine mycotoxin test which came back highly positive. This confirms the mold toxicity diagnosis I already had from another practitioner. On top of that, it appears that I have high levels of lead. Both mold and toxic metals can cause all kinds of neurological issues including the bout of extreme anxiety I had been going through over the last couple of months. Thankfully, this has now died down quite a bit and I only have some minor "aftershocks" from time to time. This could have been due to either the lead or maybe I took a mold hit or encountered some VOCs from some painting I was doing. Overall, the lack of sleep and the vibrations make me even more susceptible to anxiety.
I see the functional doc tomorrow to talk about what we're going to do about the lead. I'll post more information when I have it.
Do you still plan to try CPAP? Some people experience a reduction in reflux because the pressure helps keep the reflux down.
You might want to see a gastroenterologist to do a manometry and pH study to look at how your lower esophageal sphincter is functioning and to get a better idea of when the reflux events occur. This is what I just did. In my case, there was no correlation between reflux events and vibration events during the night. However, the report did mention that overall, the total number of reflux events was "high normal" over the course of the 24 hour study. The manometry test also showed a well-functioning LES. However, the gastro still thinks that this is a "classic" case of "visceral hypersensitivity" which I assume means that even though the reflux didn't go far enough up my esophagus to hit the sensor, some amount of reflux could still be irritating something below that (once again, perhaps the vagus nerve). Reminder that I have a hiatal hernia and a lower esophageal ring which could be part of the problem. The treatment for this according to the gastro is some combination of cognitive behavioral therapy (I don't see how this could possibly work), low-dosage acid suppressors, low-dosage neuromodulation drugs such as gabapentin. I'm not thrilled with either of the drug therapies, but I'll probably try it anyway for additional data points if nothing else. My follow-up appointment is at the end of January and I'll report back on that.
Additional info:
I also tried raising the head of my bed, but it didn't do much for me. Maybe I'll try that again.
I'm even more convinced that reflux/gastro issues are at the root of this problem. I overindulged on Christmas eve and had one of my worst nights ever.
I failed CPAP therapy (and now use an oral dental appliance) because I was getting air in my stomach. My theory on that is that the hypersensitivity was causing me to involuntarily swallow during the night which caused me to swallow the additionally-pressurized air. I recently bought a different CPAP mask and I might try this again setting my CPAP machine to a lower max pressure.
I'm seeing a new functional medicine doc who is actually local (and accepts insurance!). He is familiar with mold toxicity and wanted to run an additional urine mycotoxin test which came back highly positive. This confirms the mold toxicity diagnosis I already had from another practitioner. On top of that, it appears that I have high levels of lead. Both mold and toxic metals can cause all kinds of neurological issues including the bout of extreme anxiety I had been going through over the last couple of months. Thankfully, this has now died down quite a bit and I only have some minor "aftershocks" from time to time. This could have been due to either the lead or maybe I took a mold hit or encountered some VOCs from some painting I was doing. Overall, the lack of sleep and the vibrations make me even more susceptible to anxiety.
I see the functional doc tomorrow to talk about what we're going to do about the lead. I'll post more information when I have it.
Just checking in. Toby, I am glad to have a fellow "toner" so I know I'm not crazy. It's not a pleasant sound, but I don't think it's any kind of anxiety response. It feels much more like brain entrainment. You mentioned how immediately the vibrations start, and what I find extra puzzling is that the vibration stops even more immediately upon stopping the sound. I'm not actively exploring this right now but will come back to it.
I too have fallen off keto and believe that this led to a rise in vibrations. Also, the more sugar/carbs I have, the worse I snore. On keto, I definitely have better mental focus and more stable energy.
bl218, sorry to hear of your high anxiety. When I struggled more with that (it got so bad I would get a sudden electric shock when an unwanted email came in) I learned to manage it with mindfulness, i.e. by more awareness early on of my triggers and anxious states, and the new practice of pulling my attention/focus out of those distracting states, and actively putting it back where it was beforehand. I had to stop multitasking and using multiple monitors with computer work, and start valuing the state of being single-minded.
"Did I ever mention that this whole thing feels like some sort of diaphragmatic paralysis?"
During the daytime when I sit, for me it feels lower, as a kind of stomach spasm. I'm sitting here for half an hour symptom free, which is rare. I tend to tune out the sensation, but it is unmistakable when it suddenly stops. Naturally, I try to figure out if I've done anything to cause it to abate, and I usually conclude that I have been bearing down internally, somewhat leaning to the left.
I may have mentioned my posture issues here before. Long story short, my internal organs and core musculature almost always sits up higher than it should, rather than sink down into the pelvic cavity. Too much long-term sitting. As a result, I figure that my stomach may be distended, or I'd have various other issues of stretching and pulling that are not posturally ideal (eg. causing reflux). There are various exercises that I can do to straighten up, where it takes a good half hour or more for gravity to pull things into place. I had an usually effective session of that before bed last night, which may account for the relief I'm getting right now, the next morning. I'm going to pursue it. Maybe it's as simple as having a hiatus hernia and it slipping back into place, causing my autonomic system to cut the vibrations (in keeping with what your gastroenterologist offered). Or it could be that something that is out of place internally is putting pressure on a nerve. Regardless, during sleep the musculature obviously mostly relaxes, and this process may possibly cause my night/morning spasm. There seems to be both spasm and vibration. Spasm may be a localized amplification of the vibration.
Here's something mikexxyyzz said a couple of years back:
"One other interesting relationship that I think exists (but am not 100% sure) is shaking during exercise & tremors. For example - holding a plank until failure. On some days I'll be shaking all over the place almost from the start while others I'll hardly shake at all. And on days when I'm shakier on plank I believe the night before I had more tremors."
This is me. I will shake immediately upon plank. Although I would expect to have pathetic core muscles given my lifestyle, I don't think that I would have tremored like that before I got this health condition. What it tells me is that certain core muscles are fatigued due to my long-term postural issues. This is the so-called "neurogenic tremor" that is deliberately induced by postural fatiguing exercises, in a certain therapy for PTSD and other emotional trauma (it supposedly has natural benefits up into the brain). So I tend to think this core instability is part of my problem. Again, the physical configuration of core muscles would relax during supine posture, etc., and even sleep while sitting upright, so that the theory here would involve fatigued and spasming core muscles, which spasm/tremor is amplified when not suppressed through tension. The psoas muscle has long been associated with storage of emotional trauma/stress, so I'll just throw that out there.
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Thanks for the update ricepeg. For me, I'm convinced that I'm being attacked by one or more pathogens: Lyme, mold, parasites, who knows... At the very least, I can prove this via some lab work that my mold practitioner has been doing which shows significant levels of inflammation. Whether the vibrations are due to a separate disease process, I can't say. Anyway, I'm seeing a different functional medicine doctor who is running a few more tests so we'll see if they uncover anything. I do know that the start of my severe anxiety coincided with certain of those inflammation markers increasing. So I think I encountered some sort of pathogen that kicked this off and also made my vibrations even worse which probably feeds into my anxiety. A vicious cycle. For me, there is no trigger (that I've been able to uncover) for my anxiety. I get up in the morning after a not-so-great night. I go about my morning business feeling a little shaky, but not too bad. Then I notice that my hands are shaking, and then a short while later the near panic-level anxiety starts. This has been going on since late August. In scouring the InterWebs for natural anxiety remedies, I stumbled upon niacinamide which actually seems to be helping. That plus a sublingual form of GABA at least allows me to function. I also suspect low Lithium levels. A couple of years back, the first functional doc I saw ran a urine essential elements test which uncovered very low levels of Lithium. Amy Yasko (one of the MTHFR gurus) says that she finds that Lithium is often low in many patients she sees with genetic profiles (SNPs) similar to mine. I've also read numerous reports about folks having good luck supplementing with Lithium Orotate to address their anxiety. I haven't tried that yet, because I'm going to be doing a NutrEval test in a week or so and I'm supposed to limit supplements.
As far as the whole diaphragm/postural thing goes, I have a convertible standing desk at work. So I always spend part of the time sitting and part standing. But I never get the vibrations during the day so my situation is definitely different than yours. On the other hand, I may have kicked off this latest bout of symptoms by over-exercising. So maybe that caused more oxidative stress than I could handle or maybe I distressed some musculature or nerves.
Still deciding whether I'm going to travel to do the DNRS training (in Austin, TX) next month. And I haven't looked at the Gupta stuff yet, but I really should.
As far as the whole diaphragm/postural thing goes, I have a convertible standing desk at work. So I always spend part of the time sitting and part standing. But I never get the vibrations during the day so my situation is definitely different than yours. On the other hand, I may have kicked off this latest bout of symptoms by over-exercising. So maybe that caused more oxidative stress than I could handle or maybe I distressed some musculature or nerves.
Still deciding whether I'm going to travel to do the DNRS training (in Austin, TX) next month. And I haven't looked at the Gupta stuff yet, but I really should.
Ricepeg. I may have said this before, but your symptoms seem to be so multifactorial that it might benefit you to see a functional medicine doctor. And maybe one who is mold and Lyme literate. I think there is more going on with you than can be uncovered by a "traditional" MD.
I got one of those biostrap things which also measures oxygen saturation. Not quite as accurate as a real pulse oximeter and it only samples every 10 minutes. However, I was able to see that my average O2 is in the mid to high 90s as it should be. However, it drops to around 90 every now and then. Based on some data I had collected from my CPAP machine a while back, I think this might be because my breathing becomes shallow periodically during sleep. I don't know whether any of these events correlate with the vibrations though. Right now, I can usually get a solid 6 hours of sleep before I wake up with vibrations. This is probably due to the combination of supplements I'm taking.
My anxiety during the day has been at an all-time high which is really upsetting.
Did I ever mention that this whole thing feels like some sort of diaphragmatic paralysis?
My anxiety during the day has been at an all-time high which is really upsetting.
Did I ever mention that this whole thing feels like some sort of diaphragmatic paralysis?
So just a quick update.
I had been doing well for quite some time without vibration. Falling off the wagon with the Ketogenic diet, I put back on a few pounds and started experiencing issues again. I have started on low sugar again and the issues are going away.
Down deep it feels like my problem is breething. During a lung test it was identified that there may have been an issue that was never ran to ground because it seemed like a rat hole that was not related. I monitored my O2 with a pulse ox recorder and noticed my O2 dropped off several times during deep sleep stages. By loosing weight it helps removing the labor to breath.
At this point I am not really sure about anything. I am still going forward with no supplements without sugars.
Oh, I tried the 1.8HZ tone and immediately felt vibrations in my hands and back of neck. Just sitting on couch with headphones. Really do not know what that means.
Toby
I had been doing well for quite some time without vibration. Falling off the wagon with the Ketogenic diet, I put back on a few pounds and started experiencing issues again. I have started on low sugar again and the issues are going away.
Down deep it feels like my problem is breething. During a lung test it was identified that there may have been an issue that was never ran to ground because it seemed like a rat hole that was not related. I monitored my O2 with a pulse ox recorder and noticed my O2 dropped off several times during deep sleep stages. By loosing weight it helps removing the labor to breath.
At this point I am not really sure about anything. I am still going forward with no supplements without sugars.
Oh, I tried the 1.8HZ tone and immediately felt vibrations in my hands and back of neck. Just sitting on couch with headphones. Really do not know what that means.
Toby
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That 1.8 Hz tone thing is really interesting. I tried a bunch of different 1.8 Hz tones, but they didn't produce any vibrations. Although, I do think it made me feel slightly uneasy... Definitely something to the ketogenic diet though.
Status report. This unfortunately may not apply to you depending on where you live. I recently obtained my medical marijuana card (I live in Massachusetts) and have been trying out some things. It's still early days, but I've been taking a CBD tincture before bed which has a 2:1 ratio of CBD to THC. I am not getting 7-8 hours of sleep and wake up with only minor vibrations. I'm planning to try some tinctures with even higher CBD/THC ratios to see what happens. I had tried a pure CBD oil from hemp previously which didn't do anything for me. So I'm guessing that at least some amount of THC is needed.
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Quick update. I saw a gastroenterologist today about my possible GERD issues (which I think may be related to the vibrations). I mentioned the vibration symptom to him and held my breath waiting for usual eye-roll or blank stare. Instead he said, "Oh, yeah I've seen a lot of that particular symptom." I almost cried. He was actually surprised when I told him that most doctors I've seen have never heard of this symptom and that I was told it was "just anxiety." He believes this can be caused by a hypersensitivity to the acid reflux or just the hiatal hernia causing some kind of autonomic nervous system effect. This is similar to one of my theories. In any case, I have to do an annoying pH study where they put a sensor into your esophagus for 24 hours to measure how much acid is hitting the esophagus. If his theory is correct, then the standard treatment is either PPIs (which I've already told him I don't want to take since I believe I've had adverse reactions) or a "neuro-modulator" such as low doses of Gabapentin. I'm not thrilled with the Gabapentin idea either, but the nurse assured me that they've prescribed that a lot and she's never had a patient react badly to it or have difficulty tapering off when the time comes.
Great! I found PharmaGABA (which also allegedly goes to the brain) very effective in the early days when I was having daytime adrenaline surges. Been meaning to try it again, but have gone with Taurine for now, which I think still helps somewhat.
My reflux symptoms are less lately. And I was getting relief from bicarbonate of soda. I also did a technique where you drink water and then jump in order to coax the hernia down with gravity (not sure if it helped).
And I'm on a ketosis diet which has done wonders for brain fog, fluctuating energy levels, and perhaps anxiety.
Oh, and I tried the Wim Hof breathing method (basically controlled hyperventilation), and after 15 or so breaths I had induced a tremor in my head and neck, which isn't supposed to happen, and is almost certainly set off by adrenaline. I am still convinced of a role for adrenaline during sleep in my case, likely set off by the apnea. I've been tracking my snoring and have had random successes where I can't figure out the reason (yet). Possibly sinus massage. I've noticed that my snoring patterns represent shallow but rapid breathing, and I figure that it's a form of hyperventilation that triggers adrenaline and tremor, as I feel with the Wim Hof thing. It's going to be noticeable in the chest by morning because that's where the muscular action is.
My reflux symptoms are less lately. And I was getting relief from bicarbonate of soda. I also did a technique where you drink water and then jump in order to coax the hernia down with gravity (not sure if it helped).
And I'm on a ketosis diet which has done wonders for brain fog, fluctuating energy levels, and perhaps anxiety.
Oh, and I tried the Wim Hof breathing method (basically controlled hyperventilation), and after 15 or so breaths I had induced a tremor in my head and neck, which isn't supposed to happen, and is almost certainly set off by adrenaline. I am still convinced of a role for adrenaline during sleep in my case, likely set off by the apnea. I've been tracking my snoring and have had random successes where I can't figure out the reason (yet). Possibly sinus massage. I've noticed that my snoring patterns represent shallow but rapid breathing, and I figure that it's a form of hyperventilation that triggers adrenaline and tremor, as I feel with the Wim Hof thing. It's going to be noticeable in the chest by morning because that's where the muscular action is.
Unfortunately, none of the forms of GABA or taurine ever did anything for me.
Well, this is a first. I can induce my vibrations by listening to certain low-frequency tones in earphones. It takes about a second or two to start, and stops immediately as I stop the sound. I can feel it in my face and neck quite palpably, and also down through the chest.
This one, for example:
https://www.youtube.com/watch?v=UQLyBj2TCuc
One audio clip that does the same for me says its tone is 1.8hz, which is in the theta range related to light sleep. But I really don't know what to make of it yet, and haven't had time to research. I suspect it's not brainwave entrainment, although I am very open to sleep deprivation as a cause. It could easily be a dysfunction of the ear (My tinnitus is not pulsatile, however. It's of the ringing kind.) Weird though.
This one, for example:
https://www.youtube.com/watch?v=UQLyBj2TCuc
One audio clip that does the same for me says its tone is 1.8hz, which is in the theta range related to light sleep. But I really don't know what to make of it yet, and haven't had time to research. I suspect it's not brainwave entrainment, although I am very open to sleep deprivation as a cause. It could easily be a dysfunction of the ear (My tinnitus is not pulsatile, however. It's of the ringing kind.) Weird though.
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Very interesting. Do you need to be lying down trying to sleep to get this effect. Or does it happen regardless of your position? I just tried it at work while standing at my standing desk and didn't get any vibrations although it might have made me feel a little uneasy.
BTW, a quick Google says that delta waves are between 0.5 and 2 Hz and theta waves are between 6-10 Hz. Delta waves are associated with deep sleep (a/k/a slow wave sleep or stages N3-4). Theta waves are associated with lighter sleep (stages N1-N2). So it seems like what you've been listening to are Delta waves associated with deep sleep.
This happens when I am sitting upright, so doesn't require me to be lying down, no. Another frequency gave me what I think is a more moderate version of the same thing: less frequent facial muscle fasciculations (1-2 per second).
I don't consciously feel anxious when I hear the sound. And I don't think it represents a sudden, loud sound that triggers PTSD sufferers. Perhaps, though, it's a dysfunction of that reflexive hammer designed to close the eardrum to sudden loud sounds. Years ago I wondered about that because I had hyperacusis, but it has mostly resolved. On one occasion I did hear that pulsatile tinnitus talked about here, while I was hypnogogic, so it's just possible that I have it while sleeping without being aware, and that it is perceived as a traumatic event during sleep, leading to a PTSD-like response. I did listen to a recording of my snoring in case that induced my tremor, but it didn't (but of course my actual snoring is also an internal vibration).
Here's the detailed summary of my experience with vibrations:
A year or so before my onset of this problem, I was going through a period of stress and anxiety, and I noticed infrequent electrical vibrations while falling asleep, and a bit of neuralgia on top of my head and on my face. It passed. When the present condition came on, I initially fainted (very likely a vagal response) and experienced a rapid and overwhelming onset period for a few weeks, where my CNS felt like it was plugged into a car battery; this moved progressively to different locations of my body each day and was more pronounced when lying down for sure, until it resolved to a much more bearable level, roughly where I'm still at a year later. During that period I also had inappropriate tachycardia, and in combination with high nausea it got so bad on one occasion that I went to hospital. Both could be explained by autonomic dysfunction, and the nausea could also be explained by the adrenal fatigue theory.
My daytime tremor/vibration is at a subtle 5-10% level in the mornings. Around mid-afternoon it goes to about 20-30%, and then in the evenings around 50%. If it jumps higher I will tend to rapidly tap the back of my neck with my fingers and it will cut out entirely, until shortly creeping back in. I used to be able to tap my forehead, but this isn't sufficient anymore. I can also feel nauseous in keeping with the level of tremor, and it gets worse with caffeine. I found an OTC anticholinergic that seems to cut the tremor, although I need to complete my testing of that to be sure (if I can successfully cut the tremor that way I'll also then experiment with the sound and with being horizontal, to learn more).
As far as I can tell, my sudden onset experience and my daytime vibrations differ from everyone here, although one or more here mentioned daytime vibrations early on for them. But my pre-onset phase, which went away, shows me that I could have ended up here gradually even if I didn't have the dramatic onset experience.
On top of all that, I have what you all seem to describe, in terms of a phenomenon lying down and falling asleep, and then during waking up, which quickly dissipates. In the mornings the activity is localized in my diaphragm area, although I feel tingly neuro issues all over as an effect. While falling asleep, it used to be in my upper body but now it's commonly in my lower legs most noticeably. (I also have restless leg.)
I don't consciously feel anxious when I hear the sound. And I don't think it represents a sudden, loud sound that triggers PTSD sufferers. Perhaps, though, it's a dysfunction of that reflexive hammer designed to close the eardrum to sudden loud sounds. Years ago I wondered about that because I had hyperacusis, but it has mostly resolved. On one occasion I did hear that pulsatile tinnitus talked about here, while I was hypnogogic, so it's just possible that I have it while sleeping without being aware, and that it is perceived as a traumatic event during sleep, leading to a PTSD-like response. I did listen to a recording of my snoring in case that induced my tremor, but it didn't (but of course my actual snoring is also an internal vibration).
Here's the detailed summary of my experience with vibrations:
A year or so before my onset of this problem, I was going through a period of stress and anxiety, and I noticed infrequent electrical vibrations while falling asleep, and a bit of neuralgia on top of my head and on my face. It passed. When the present condition came on, I initially fainted (very likely a vagal response) and experienced a rapid and overwhelming onset period for a few weeks, where my CNS felt like it was plugged into a car battery; this moved progressively to different locations of my body each day and was more pronounced when lying down for sure, until it resolved to a much more bearable level, roughly where I'm still at a year later. During that period I also had inappropriate tachycardia, and in combination with high nausea it got so bad on one occasion that I went to hospital. Both could be explained by autonomic dysfunction, and the nausea could also be explained by the adrenal fatigue theory.
My daytime tremor/vibration is at a subtle 5-10% level in the mornings. Around mid-afternoon it goes to about 20-30%, and then in the evenings around 50%. If it jumps higher I will tend to rapidly tap the back of my neck with my fingers and it will cut out entirely, until shortly creeping back in. I used to be able to tap my forehead, but this isn't sufficient anymore. I can also feel nauseous in keeping with the level of tremor, and it gets worse with caffeine. I found an OTC anticholinergic that seems to cut the tremor, although I need to complete my testing of that to be sure (if I can successfully cut the tremor that way I'll also then experiment with the sound and with being horizontal, to learn more).
As far as I can tell, my sudden onset experience and my daytime vibrations differ from everyone here, although one or more here mentioned daytime vibrations early on for them. But my pre-onset phase, which went away, shows me that I could have ended up here gradually even if I didn't have the dramatic onset experience.
On top of all that, I have what you all seem to describe, in terms of a phenomenon lying down and falling asleep, and then during waking up, which quickly dissipates. In the mornings the activity is localized in my diaphragm area, although I feel tingly neuro issues all over as an effect. While falling asleep, it used to be in my upper body but now it's commonly in my lower legs most noticeably. (I also have restless leg.)
Yes. What you've described is definitely more complicated than my situation. However, it does seem that everyone started with some sort of physical/emotional stressor. I wonder if a *short* treatment with a benzodiazepine might break some sort of cycle with all this. Maybe that's part of what helped Toby. What is the OTC anticholinergic you tried?
It's Travacalm, which contains both Dimenhydrinate (50mg) and Hyocine Hydrobromide (0.2mg).
Ah OK. Similar to Dramamine.
Here is a completely different idea based on ricepeg's neuro's hypothesis that the vibrations are a symptom of some sort of PTSD. There is something called Dynamic Neural Retraining which is supposed to help you re-wire your limbic system to, among other things, deal with the symptoms of PTSD. I'm looking into this now. Google it if you want to know more. Attending the program is a bit expensive, but you can also get the program on DVD. Just a thought on a different line of attach.
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I have looked into something similar from Ashok Gupta. It's on my list of things to try, and I can see it possibly helping.
FWIW, I just did some blood tests for B vitamins since they are involved in methylation, stress, anxiety, etc. I was very surprised to find out that my serum B6 is 2x the upper limit. I had done some light supplementing with B6 prior to that, but very little. One site I found indicated that high serum levels could actually result from a *deficiency*. B6 is known to be a stress mediator. Both too little and too much B6 can cause significant problems. Also something that is not recognized by mainstream medicine. http://www.easy-immune-health.com/vitamin-b6-toxicity.html
4 Comments
Thank you. Very useful information, because counter-intuitive. According to the article, the fix is to take bioavailable B6 & B12 in particular; something I can try. I'm MTHFR compound heterozygous, normal B12 and unknown B6. Might put B6 testing down on the to do list.
Exactly, I started supplementing with B6 because I thought it might be exactly what I needed. But I think it backfired on me because all of a sudden I started getting terrible anxiety. I'm not 100% certain that it was due to B6 toxicity though. In any case, I've stopped the B6 and I plan to measure my levels again in a few weeks. I was taking both the pyridoxine form and the P5P form and so I guess it's still possible that I have functional deficiency and maybe I need to take the P5P form only. I'm MTHFR heterozygous for c677t only and my homocysteine is at the very high end of the normal range according to conventional levels and definitely high according to functional medicine levels. I'm still holding off an continuing with B12/folate supplementation until I measure my B6 and B12 levels again. You might also want to Google "pyroluria" to see if you fit that description. Yet another potential rathole to go down...
You're right about yet another rathole, but I appreciate the reminder, as I meant to follow up on pyroluria again (first time dismissed as fringe, second time intrigued by the similarities... now I'm open to just about anything!)
From memory my homocysteine wasn't high comparable to yours. I am stopping my pyridoxine B6 and will order P5P next round and hopefully get a test for it.
From memory my homocysteine wasn't high comparable to yours. I am stopping my pyridoxine B6 and will order P5P next round and hopefully get a test for it.
Warning: supplementing with Zinc/B6 backfired on me big-time. It without a doubt caused significant anxiety/depression. I don't know whether it was the Zinc or B6 or both. I've found some mention of this while researching pyroluria. One theory is that since Zinc is a Copper antagonist, it might cause copper to be "dumped" into the blood stream resulting in some of these psych symptoms. My plan is to do the pyroluria urine test to see if I can confirm that I even have this condition. Then I might try supplementing again at much lower dosages. And yes, I realize this whole thing is diverging from the whole sleep vibrations issue, but who knows whether this could be a contributing factor?
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