Does anyone else have severe tremors, body twitches, and high blood pressure with their POTS?

[rhonda1017]

Hi,

    I just came back from Cleveland Clinic and I tested positive on the tilt table for POTS, but they also told me that it is secondary to a primary problem.  They told me that POTS doesn't have severe tremors, body twithces, and high blood pressure.  My tremors are so severe at times that I look like I am having a seizure, but I'm not.  I get body twitches that I can not control.  My hand might just fly up in the air, sometimes it's a leg, or finger, and I've even had my entire body twitch so hard that it hurts.  If anyone else has these symptoms, please let me know and do you have a diagnosis?  Are there any meds or things out there to help with the tremors and body twitches.  They are making me very weak.  I have even fallen because my legs are shaking so bad, that they won't support me.  Thanks for any help or ideas you can give him.

[BPPslim]

Is it possible you have tardive dyskinesia? My POTS/Dysautonomia is related to an old medication reaction that basically crashed my autonomic nervous system. (Tardive Dyskinesia)-I have involuntary muscle spasms in both legs, both arms & my scalp. It took years to realize the spasms were from an old drug reaction. It was additional years before it was discovered I have really low dopamine levels. That specific med requires lots of dopamine. It lead to the realization all my dysautonomia symptoms related back to this one medication reaction. I also looked like I was having seizures. My tardive dyskinesia was controlled with baclofen (muscle relaxant), valium, & diphenhydramine (benadryl). The baclofen & valium were oral meds, the benadryl was IV. Over time I have been able to slowly wean off the baclofen & valium. I mean VERY slowly. I am trying to very slowly lower my benadryl. On a tilt table test I also have swings in my heart rate & blood pressure even if I just speak. An interesting thing is when distracted the symptoms of tardive dyskinesia actually get WORSE. Why this is important to know is a medical provider can misinterpret if your symptoms get worse when with you vs them observing you without you knowing they are there. They can think you are purposely making symptoms worse when they are there.  In reality, when distracted you are LESS able to control symptoms on your own. Hope this helps in some way.

[EatFruit]

I do experience shaking and tremors but I always assumed it was caused by my anxiety.

[EatFruit]

I do experience shaking and tremors but I always assumed it was caused by my anxiety.

[torilynn363]

I have not been tested for POTS but will be soon I've been having very many issues with my so called "syncope", BUT yes, I just passed out recently on Sunday and seem to have seized after. It was super scary and it happens almost everytime. My doctor didn't believe me at first, but now does after witnesses telling him what happens to me after I pass out. He believes they are non-epileptic seizures. Could that be a possibility for you as well?

[CelloGirl11]

Some people have a myoclonus (muscle twitching) after fainting.

[lotti3]

Hello Rhonda

I'm reading your post many years after you wrote it, and it is exactly the symptoms my wife has now

She is diagnosed with autonomic dysfunction, ehlers danlos and pots. Currently she is on midrodine, and they are considering evabrodine also.

Love to hear how you've been and your experiences since this post.

[didi112385]

Hi Rhonda I know you left this post such a long time ago but  I have just now come across it......I also have POTS and all of the symptoms you mentioned above plus many many more. Have you ever heard of dysautonomia it actually goes along with POTS you should look it up and all of your symptoms would make so much more since to you.  I am sorry you also have to go through this and I pray you can get in under control one day. I have been going through these symptoms for 6 years now and it took 3 years to find a doctor who could figure out what was going on. I am still getting new symptoms every now and then so it is very frustrating..... you may already know this but if now drink 3-4 liters of water a day and add lots of salt to your diet. My blood pressure drops so low I sometimes have to actually lick a handful of salt. It also helps me when I get IV fluids every now and then. I hope you have found something that helps you in some way, this is a very difficult thing to live with.

Danelle

[Phyllischas]

I was diagnosed with Orthostatic Tremors and Propriosponal Myoclonus.  I have very similar symptoms, along with blood pressure that spikes and then often goes very low.  I am taking Carvedilol and Avapro for blood pressure and Clonazepam and Keppra for the neurological conditions.  I couldn't function without these meds, but still have episodes out if the blue.  Then I need to rest for several days to regain my strength.

[Odyvanchk]

I have severe tachycardia upon awakening,sometime middle of night followed by entire body  tremors that lasts 20-3 0 min,not sure since checking time is the last thing on my mind during episodes. I am diagnosed with pots. Just started on atenolol,1/4 of 25 mg,which seems to eliminate day time tachycardia. This morning episode was not expected though. Took atenolol,which stopped tachycardia,but not tremors. Want to try propranolol, which is systemic beta blocker,vs.atenolol is a cardio beta blocker. My sister bought it for me in ukraine. They sell pretty much everything without a prescription. Dr. Svetlana Blitshteyn from NY recomended atenolol after I had a telephone consult with her. I was hoping to ride out POTS without medication. Darn it.

[abmascarenas]

Rhonda, except for the "high" blood pressure, your symptoms are the same as my daughter's. She has extremely low blood pressure. She has been fainting because of it since she was 17.

[abmascarenas]

Personally, I would wait until the Mayo Clinic appointment. We're probably going to be taking our 20-year-old daughter to the Mayo Clinic in December. They will have several specialists on your team to evaluate you. Don't lose hope.

[abmascarenas]

My daughter was also recently diagnosed with POTS. Her cardiologist told us that the tremors are not related... NOT buying it! I have also seen videos and read many posts from others who have POTS and tremors. Don't understand how doctors can keep telling us that the tremors aren't related to POTS! My daughter is only 20 and has her whole life ahead of her... every day is such a struggle for her. She faints almost everyday, and sometimes several times a day. Midodrine and salt tablets aren't working to keep her blood pressure up enough to prevent it from bottoming out and making her faint.

[Traceyecho]

My daughter has POTS and she does the same thing. All of the Dr. tell us that it is not the POTS. It is not seizures. I have seen many people posting things like this. It is not in your head. The Dr.s have not gotten this disease figured out. There are many videos on youtube. Have strength and hang in there. Just know that it is not you, and you are not making it up.

[Lightforpotspatients]

Yes, I have been diagnosed with POTS and also have severe tremors that shake my entire body, especially from the stomach area out to the rest of my body. It can last for hours, and my blood pressure is not low during this. A clonidine transdermal patch and clonazepam help significantly. The problem with Clonazepam, though, is that it will stop working, so you have to take a small dose and taper off it when you don't need it so that it will work when you have another "seizure" episode. I, too, am trying to find out what can better help. Sleeping well and avoiding lots of sensory stimulation (I wear earplugs a lot) helps. I hope and pray that the medical community comes up with a good answer, but I have also received significant help from healing prayer teams such as the one at ibethel.org. You can Skype with them on Saturdays and Thursdays, and they will pray for you.

[Lightforpotspatients]

Yes, I have been diagnosed with POTS and also have severe tremors that shake my entire body, especially from the stomach area out to the rest of my body. It can last for hours, and my blood pressure is not low during this. A clonidine transdermal patch and clonazepam help significantly. The problem with Clonazepam, though, is that it will stop working, so you have to take a small dose and taper off it when you don't need it so that it will work when you have another "seizure" episode. I, too, am trying to find out what can better help. Sleeping well and avoiding lots of sensory stimulation (I wear earplugs a lot) helps. I hope and pray that the medical community comes up with a good answer, but I have also received significant help from healing prayer teams such as the one at ibethel.org. You can Skype with them on Saturdays and Thursdays, and they will pray for you.

[sacox88]

I have POTS an this past year I started having convulsions that resemble grand mal seizures but they are not... Were still trying to figure it out I have them every four months an last summer lost my memory for 2 months. Anytime I have one I lose speech, being able to see or walk

[debkrolls]

Hey, thats me! Ehlers-Danlos ended up to be my problem.

[Heiferly]

Can both of you start new threads with your topics?  (Click the "Post a Question" button near the top of this page to do so.)  I'm afraid your posts are buried at the bottom of this outdated thread (from the summer of 08) and are not going to get the attention they deserve in our forum.  

Looking forward to getting to know you both better,
Heiferly.

[dmp2012]

ummm, i've read some of your comments and symptoms and I have to admit that I too have experienced this as well. After a good workout or cracking my knuckles, my thumb or middle finger will twitch like crazy. I also get this twitching feeling in my legs near my knees and in the bicep part of my arm. I recently went to a physician and was told that I have high blood pressure as well. My B/P is only 156/108 but still its abnormally high for someone my age. I haven't been to a doctor yet, so i'm wondering should I go and check this out. Please comments and concerns are welcome.

[anointed5609]

Wow! I've been searching and searching for answers or clues to what I've been experiancing.I  have all the symtoms that rhonda talks about. I have a doctor appointment on  Thursday hoping my doctor can help me in these areas.I have first noticed these issues back in 2006 but they went away for about 2 1/2 years.Now they are back stronger than ever and I'm afraid to drive.It hurts and after the tremors or seizure like symptoms and certain parts of my body feels like it's on fire. I feel trapped in my own body but thanks for the info,it was very insightful

[buddysmom1]

When I first started with dysautonomia I sounded just like you, I had involuntary twitches and tremors and all the things you have that was nine months ago I was tested for everything they were so sure I had a pheochromocytoma that I was sent to NIH and tested negitive. Had very bad head tremors still have them sometimes, I was unable to walk without holding on too something and then only to bed and bathroom I thought I was going to die. I tested positive for pots too, they also thought I had to have something else besides pots, well I have been to Vanderbilt and all over the place and not one MD could tell me what I had they never thought I had MSA though. I was very weak and could not eat I lost 40 lbs and though I was going to die. I had all your symptoms and more. Slowly they have gotten better what I feel really helped me was a clonodine patch .1mg per day I can tell you when I get off of it like I had too for Vanderbilt recently it was hell. What finally made sense too me was my sympathic nervous system for some reason went haywire and they just don't know. I can tell you I am better it took me until Jan and I had been sick since May of last year, I still have a lot of issues but not like I did before I still have high heart rates at times but usually not over 110's even when I am walking. I still have tremors but not as bad as before, I still get some mini inadvertant movements but none like it was so keep you chin up I really thing you need to get on the right meds now my BP hardly ever gets above 120's over 80 unless I am having a very bad day , I drink a lot and the big difference was once I had control over my BP and heart rates I also take atenlol 12.5mg every day. I could function again so don't let them scare you it could be pots the hyperadnergic type and with the proper meds and exercise you will improve, I felt like my life was over and at times now I doo also but I keep pluggin along and everyday I see a little improvement. If you need to e mail me privately give me you e mail .

[antillus]

Sounds a lot like a pheochromocytoma

[rhonda1017]

Hi,

     Thanks for all of the information.  I have been gone for the past 9 days and haven't been able to check my email.
     Ryan, I did have a 24 hr. urine test done at Cleveland Clinic and they did a Cat Scan of my abdomen to see if my adrenal gland had a tumor and it wasn't present.  I received all of my information from MAYO and they will be doing the other tests that you mentioned out there again.  I have many other tests they plan on administering, too.  My doctor just had to up my medication again as my average blood pressure during the day was 168/115 and my heart rate was 169.  I really hope they can find something to control the B/P, because if they can't it is going to damage my heart.  So, far I have been lucky and my heart is still okay, but the doctors told me that it can't withstand those numbers indefinetly.  This is the 4th time since March that they have had to double my medication.  My body seems to ignore the medication after about 3 weeks and everything starts going back up again.
    Plateletgirl thanks for the information about the Marshall Protocol.  I will be looking into more information about this.  Please send me any information that you have and I will google it.  I have found that you have to be an advocate for yourself and proactive in your medical issues.  Some doctors just don't understand or think you are having anxiety attacks.  But, anxiety attacks don't happen 24/7.
    I would appreciate your prayers within the next month.  I am to be weened off ALL of my medications by October 4th for my tests scheduled at MAYO.  I all ready have a difficult time and I can't imagine how things are going to be with no meds.  I look like someone having a seizure at times with the meds.  So, needless to say I am nervous about being off all meds.

Thanks for everything,
Rhonda

[PlateletGal]

What Dr. Marshall also says is that the Benicar allows your immune system to 'see' and eliminate intracellular bacteria. He believes that intraceullular bacteria is the underlying cause of many illnesses.

I know if my physician had me on the Benicar and then gave me a FULL dose of Minocycline... that I would be in trouble. I had to slowly add the Minocycline to the mix and started taking only 25 MG every 48 hours. It was amazing what a small dose of minocycline along with the Benicar could do. I had herxing symptoms and felt worse as a result.

The Marshall Protocol is a research protocol. You can google for more information.

[PlateletGal]

"Benicar, when given to healthy people, causes a very mild depression in blood pressure (the FDA has told us that it is the least effective of all the pressor drugs) and no side effects beyond dizziness. But when given to sick people, as we have found, it has a profound effect, due to the immunopathology."

~Dr. Trevor Marshall, Ph.D.

[PlateletGal]

"I was started on 20 milligrams of Benicar, which was increased to 40 milligrams after two weeks. At the time, I also had an infection, and was taking Minocycline."

Hi Ryan,

Thank you for your comments. I find everything you've said very interesting. I was on the  Marshall Protocol for CFS. I started out with Benicar (40 MG 3 X daily) and eventually added Minocycline to the mix. I'm wondering if your symptoms were due to severe herxing (AKA: Jarisch-Herxheimer reaction) ???