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What things could be causing my autonomic dysfunction?
37 year old male. 5'8 150 pounds. 3 ER visits December 2019 - January 2020 for blood pressure and heart rate going up and down, dizziness, short bursts of shortness of breath, lightheadedness, adrenaline, facial flushing, etc. EKGs done at the hospital. Tons of blood work to check for everything, including pheochromocytomas. Numerous primary care doctor visits and blood work. Endocrinologist checked my thyroid. Not diabetic. MRI of the brain with and without contrast showed a healthy brain. Contrast CT scan of the abdomen showed nothing abnormal with any organs. MRI of the abdomen showed nothing abnormal with any organs and ruled out any adrenal tumors. The day after it first began with the first ER visit in December 2019, I went to a Cardiologist. 160/90 blood pressure. He couldn't find a cause. Full Stress Echocardiogram with ultrasound of the heart before and after the treadmill and Color Flow. Healthy with nothing seen. Wore a real-time heart monitor with 5 leads for 30 days and symptoms that got sent to my doctor if there was an issue. Reported hundreds of events of dizziness, palpitations, rapid heartbeat, etc., and that cardiologist stated they saw nothing but half of a second of irregular heartbeat in the first 15 days and that it happened at a time when I didn't even report symptoms. I've seen a Gastroenterologist because in February I started having some severe stomach pains after the household came down with a stomach virus. Upper Endoscopy showed only a red and inflamed stomach lining. Negative stomach biopsy for cancer and H. Pylori.
One primary care doc thinks I have some sort of autonomic dysfunction. He referred me to an electrophysiologist for tilt table testing. Electrophysiologist saw all that I have been through and wants an Echocardiogram and event monitor.
I've started blood pressure logs per my second (new) cardiologist, the electrophysiologist. My blood pressure is all over the place. I've awaken in the morning to 154/121. Other times it drops considerably while sleeping.
This afternoon I took about an hour nap lying down. 4:51pm was 109/72 with 77 pulse. 501pm was 103/73 with 83 pulse. 5:16pm was 106/64 with 77 pulse and 5:18pm was 109/76 with 87 pulse. As you can see, in less than 30 minutes, it is all over the place. Yesterday morning at 7am I had been asleep for hours and while still in bed it was 151/101 with only a 71 pulse rate. When I got out of bed 30 seconds later, it instantly dropped to 124/93 with 85 pulse. SPO2 monitor on my finger showed my heart rate jump from upper 90's to 121 and back within a few seconds, so I've got heart rate going all over the place. Sometimes it doesn't even matter if I'm sitting, standing or lying down, my heart rate will jump 20-30 numbers higher or lower within seconds then temporarily stabilize.
This seems to indicate Dysautonomia/POTS-like behavior. I get short of breath sometimes and dizzy if leaning slightly forward to wash hands over a sink. On days when I sleep 7-9 hours, I'm dizzy all day with it feeling like my heartbeat is too slow and it usually stays in the 70's for most of the earlier part of the day. If I sleep 5-6 hours, I'm not dizzy on some days. It's totally random and stupid. I suspect that on days when I'm getting less sleep, that naturally stresses the body (albeit not good for me, of course) and keeps my blood pressure higher as a result.
2018 - In-lab sleep study showed 4.7 apneas/hour. Early 2020, I've been placed on Bi-Level machine after they logged 64 apneas/hour during another sleep study with another sleep lab. Something happened. I see evidence online that drops in blood pressure can cause pressure in the diaphragm and therefore cause apneas similar to sleep apnea. My sleep doctor, of course, denies this.
Tilt table test coming up in the near future, as well.
One morning I slept pretty badly and woke up at 4am to a 154/125 blood pressure. I reached over and took it with the automatic tested and didn't move much. By later in the morning, it had gone down. Pulse rate was only like 70 at that time. Other days pulse might be 125 and I'll feel dizzy all day.
Neurology/sleep medicine doc appointment in early October for my random neurological "jumps" that happen when I go to pick up stuff, nearly drop something, etc. While sitting upright during the day, if I drift off to sleep, I'll get hynogogic-like jerks that repeat frequently. Pretty strong lower back pain that can cause some sharp shock-like pains that make me jump, as well. Feels like something is being pinched sometimes.
Should I be worried about a heart problem? My first cardiologist said I was healthy and he thought it was anxiety. Yet his reports say:
Palpitations, precordial pain, dizziness and giddiness, abnormal electrocardiogram. His ECG shows sinus tachycardia and poor r wave progression. Has had tsh checked ok, will give a chest press and will do a stress echo with chest pain and sob and near syncope."
Stress EKG showed nothing, of course.
One primary care doc thinks I have some sort of autonomic dysfunction. He referred me to an electrophysiologist for tilt table testing. Electrophysiologist saw all that I have been through and wants an Echocardiogram and event monitor.
I've started blood pressure logs per my second (new) cardiologist, the electrophysiologist. My blood pressure is all over the place. I've awaken in the morning to 154/121. Other times it drops considerably while sleeping.
This afternoon I took about an hour nap lying down. 4:51pm was 109/72 with 77 pulse. 501pm was 103/73 with 83 pulse. 5:16pm was 106/64 with 77 pulse and 5:18pm was 109/76 with 87 pulse. As you can see, in less than 30 minutes, it is all over the place. Yesterday morning at 7am I had been asleep for hours and while still in bed it was 151/101 with only a 71 pulse rate. When I got out of bed 30 seconds later, it instantly dropped to 124/93 with 85 pulse. SPO2 monitor on my finger showed my heart rate jump from upper 90's to 121 and back within a few seconds, so I've got heart rate going all over the place. Sometimes it doesn't even matter if I'm sitting, standing or lying down, my heart rate will jump 20-30 numbers higher or lower within seconds then temporarily stabilize.
This seems to indicate Dysautonomia/POTS-like behavior. I get short of breath sometimes and dizzy if leaning slightly forward to wash hands over a sink. On days when I sleep 7-9 hours, I'm dizzy all day with it feeling like my heartbeat is too slow and it usually stays in the 70's for most of the earlier part of the day. If I sleep 5-6 hours, I'm not dizzy on some days. It's totally random and stupid. I suspect that on days when I'm getting less sleep, that naturally stresses the body (albeit not good for me, of course) and keeps my blood pressure higher as a result.
2018 - In-lab sleep study showed 4.7 apneas/hour. Early 2020, I've been placed on Bi-Level machine after they logged 64 apneas/hour during another sleep study with another sleep lab. Something happened. I see evidence online that drops in blood pressure can cause pressure in the diaphragm and therefore cause apneas similar to sleep apnea. My sleep doctor, of course, denies this.
Tilt table test coming up in the near future, as well.
One morning I slept pretty badly and woke up at 4am to a 154/125 blood pressure. I reached over and took it with the automatic tested and didn't move much. By later in the morning, it had gone down. Pulse rate was only like 70 at that time. Other days pulse might be 125 and I'll feel dizzy all day.
Neurology/sleep medicine doc appointment in early October for my random neurological "jumps" that happen when I go to pick up stuff, nearly drop something, etc. While sitting upright during the day, if I drift off to sleep, I'll get hynogogic-like jerks that repeat frequently. Pretty strong lower back pain that can cause some sharp shock-like pains that make me jump, as well. Feels like something is being pinched sometimes.
Should I be worried about a heart problem? My first cardiologist said I was healthy and he thought it was anxiety. Yet his reports say:
Palpitations, precordial pain, dizziness and giddiness, abnormal electrocardiogram. His ECG shows sinus tachycardia and poor r wave progression. Has had tsh checked ok, will give a chest press and will do a stress echo with chest pain and sob and near syncope."
Stress EKG showed nothing, of course.
I ran my DNA and found variants on PEMT, CHAT and CHDH genes. Choline/Acetylcholine deficiencies seem to have contributed to my Autonomic Dysfunction, which led to Gastroparesis and protein malabsorption. It appears my amino acids levels fell low enough to have triggered a seizure disorder. I use Doctor's Data amino acid test to monitor my levels as I use Collagen Peptides, bulk powdered Amino Acids and digestive enzymes to try to get them back up to normal range.
I'm not quite sure, but I've heard - that those people who ignore moving a lot during the day, have bigger chances to get that kind of disease of that type of dysfunction. What do you think about it? And well, if we consider about movements at nursing job, what would you recommend as the shoes? Have you heard something about Keli professional model? When I need to compare them with other nursing shoes, I've looked here for more models and compared them. It seems like it's pretty informative resource.
1 Comments
Are you referring to Neurocardiogenic syncope being the type of dysautonomia associated with sedentary lifestyle?
As for that I would 100% disagree that it has to do with being sedentary because when I first fainted I was working in a corn factory constantly moving and walking 20+ miles a day. My electrophysiologist agrees that my high level of exertion as well as the factory not being air conditioned put far too much stress on my nervous system and may have actually caused it or at least caused it to get worse.
As for shoes I don't have a favorite brand but I do love custom inserts from the Good Feet store, they make every shoe more comfortable.
As for that I would 100% disagree that it has to do with being sedentary because when I first fainted I was working in a corn factory constantly moving and walking 20+ miles a day. My electrophysiologist agrees that my high level of exertion as well as the factory not being air conditioned put far too much stress on my nervous system and may have actually caused it or at least caused it to get worse.
As for shoes I don't have a favorite brand but I do love custom inserts from the Good Feet store, they make every shoe more comfortable.
I have very similar experience and have read many a scientific journal, medical journal, anything I can because many Drs don't seem to know what's going on. I have not had a tilt table test but have been diagnosed with Neurocardiogenic Syncope from my reported symptoms and observed vitals.
With both under the dysautonomia umbrella, NCS is similar to POTS, but NCS is more fluctuating and random in vitals and takes a longer time being upright to pass out. POTS is all about fast heart rate 140+ upon standing. Mine tends to go high, but not high enough for POTS, then randomly plummet. Then, I have either syncope or near syncope because of the low pulse. My diagnosis came from observing my pulse upon waking from 4.5 hours of sleep, in a hot bed. Laying, pulse was 72, standing up quickly it was 110, I took 3 steps, pulse went to 40.
I may have responded to another post you put up but I'd like to get this info out there again in the hope that it will help someone. So many people assume dysautonomia is all POTS but there are several types, the main commonality being dysfunction of autonomic systems.
Although I fully believe my heart stops at times, I have observed my pulse range from 21 to 143 with only walking around/minimal exertion, have seen my bp as low as 90/60 and as high as 155/98, and oxygen dips as low as 72% but no nurses or Dr are worried because it recovers after I stop moving. As a mechanic I am so frustrated by this because *anything* out of tolerance should be a concern. Short, consistent stresses can absolutely cause catastrophic failure over time and are indicative of a regulation malfunction.
Please know that depending on level of fitness, a pulse can range from 70-100 and be normal, without exertion, so your pulse and bp examples presented from your afternoon nap are within tolerance . A very fit person can see a regular pulse of 60 and even down to 40 and be normal. Posture change can create swings that are normal in pulse with 30 bpm variance. Changes in bp are normal for 20 points for systolic and 10 points for diastolic. It is those times after a few seconds standing if your bp isn't in a good range, or if it drops or raises more than those 30+pulse, 20/10 sys/dia that is a concern. You seem to have moments of being within range, and moments of extreme instability- I am exactly the same, even down to dizziness upon leaning over.
I also have migraines, sleep issues (though a normal sleep study), gasp awake sometimes, a pressure feeling in my head with exertion, and an annoying constant tinnitus. My IBS largely resolved with going gluten free.
I am unsatisfied with my prognosis, which is to eat "more" salt ( no value given on how much) drink 120+ oz of fluid a day with at least 1/3 of that being electrolyte drinks, and physical therapy.
I am going to start with a naturopathic Dr who suggests adrenal fatigue syndrome or AFS. This is a very common condition in US but conventional medicine largely ignores it.
AFS would explain your/our vital changes during sleep, as inappropriate adrenaline surges during sleep (as are autonomic dysfunction symptoms) are a hallmark of this condition. I hope you will consider a naturopathic course.
With both under the dysautonomia umbrella, NCS is similar to POTS, but NCS is more fluctuating and random in vitals and takes a longer time being upright to pass out. POTS is all about fast heart rate 140+ upon standing. Mine tends to go high, but not high enough for POTS, then randomly plummet. Then, I have either syncope or near syncope because of the low pulse. My diagnosis came from observing my pulse upon waking from 4.5 hours of sleep, in a hot bed. Laying, pulse was 72, standing up quickly it was 110, I took 3 steps, pulse went to 40.
I may have responded to another post you put up but I'd like to get this info out there again in the hope that it will help someone. So many people assume dysautonomia is all POTS but there are several types, the main commonality being dysfunction of autonomic systems.
Although I fully believe my heart stops at times, I have observed my pulse range from 21 to 143 with only walking around/minimal exertion, have seen my bp as low as 90/60 and as high as 155/98, and oxygen dips as low as 72% but no nurses or Dr are worried because it recovers after I stop moving. As a mechanic I am so frustrated by this because *anything* out of tolerance should be a concern. Short, consistent stresses can absolutely cause catastrophic failure over time and are indicative of a regulation malfunction.
Please know that depending on level of fitness, a pulse can range from 70-100 and be normal, without exertion, so your pulse and bp examples presented from your afternoon nap are within tolerance . A very fit person can see a regular pulse of 60 and even down to 40 and be normal. Posture change can create swings that are normal in pulse with 30 bpm variance. Changes in bp are normal for 20 points for systolic and 10 points for diastolic. It is those times after a few seconds standing if your bp isn't in a good range, or if it drops or raises more than those 30+pulse, 20/10 sys/dia that is a concern. You seem to have moments of being within range, and moments of extreme instability- I am exactly the same, even down to dizziness upon leaning over.
I also have migraines, sleep issues (though a normal sleep study), gasp awake sometimes, a pressure feeling in my head with exertion, and an annoying constant tinnitus. My IBS largely resolved with going gluten free.
I am unsatisfied with my prognosis, which is to eat "more" salt ( no value given on how much) drink 120+ oz of fluid a day with at least 1/3 of that being electrolyte drinks, and physical therapy.
I am going to start with a naturopathic Dr who suggests adrenal fatigue syndrome or AFS. This is a very common condition in US but conventional medicine largely ignores it.
AFS would explain your/our vital changes during sleep, as inappropriate adrenaline surges during sleep (as are autonomic dysfunction symptoms) are a hallmark of this condition. I hope you will consider a naturopathic course.
4 Comments
Hi there! Following up a year later. Were you able to get any relief or answers from your naturopath? I have almost identical symptoms and am looking for what doctor to try next as all of my traditional doctors have no answers. Thank you and God bless!
YES! Thank you for the reminder to update.
After going to Mayo clinic and actually talking with a doctor who knows just as much as me about dysautonomia, he said that through exercise we could make my worst days a little less worse.
The issue with that, I said, is that my chronic fatigue symptom makes it feel like I constantly have a 50 lb weighted blanket on my body, so how am I supposed to exercise? Can we not work on the crushing fatigue? He didn't have any answer for that, but at least he had compassion and didn't gaslight me.
After that I kept looking and I have had breakthrough with Dr. Joel Wallach, who is a veterinarian/pathologist/agronomist/naturopathic doctor.
With a master herbalist/agronomist who works with Dr. Wallachs program, I did a hand scan called a zyto scan which measures galvanic skin response and it showed that my HYPOTHALAMUS was very unhappy. Interestingly enough, my friend who had a different form of dysautonomia, POTS, ALSO had a very unhappy hypothalamus when she did a scan. (!!!)
This makes perfect sense, and I had already theorized at this point that hypothalamus could be a root cause of my issues, as blood pressure or getting overheated (easily) was always my first symptom in the domino fall of symptoms, and guess what the hypothalamus controls? Blood pressure, body temp regulation, sleep, and hormones!!
(Me being a female mechanic, and trained to look for root causes NOT cover up symptoms)
The herbalist told me that she has seen time and time again that blood pressure issues both high and low are an issue with severe Calcium and magnesium deficiency. Funny thing is I was taking a calcium/magnesium supplement already. But Dr. Wallach's stance is that all disease is some sort of nutrient deficiency, and even supplements don't have all the co-factors that you need to ABSORB the nutrient in the part of the body that needs it. Co-factor being a nutrient or nutrients that your body needs in order to absorb another nutrient, i.e., in order to absorb potassium you must have sufficient vit D.
I was willing to try anything at that point (Feb '22) and what Dr. Wallach says makes sense, so I tried the calcium supplement that he developed with all the cofactors.
I started taking it, and craved it SO badly throughout the day mind you, and One month later - I had STABLE BLOOD PRESSURE sitting standing and walking, I have my life back!!
My scan also showed that I very badly needed jasmine essential oil. That turned around my intracranial hypertension in a WEEK. I have always been open to oils and all that, but I was still wondering why it helped. I found an article on PubMed where it says both jasmine and saffron have a chemical that reduces high blood pressure and spinal fluid pressure.
Because I had hit my head very hard the first time I passed out, I had become prone to head pressure feelings and increased migraines.
Anyway there is a TON that I have learned and obviously it is true because now I'm back to standing without fear of blood pressure falling, I have my life back and I'm both so grateful and so pissed off that it was this easy!!
Dr Wallach has tons and tons of videos out and he is saving lives and gicing back lives left and right, he is a true Godsend.
Feel free to email me at if you want to talk more, ***@****
After going to Mayo clinic and actually talking with a doctor who knows just as much as me about dysautonomia, he said that through exercise we could make my worst days a little less worse.
The issue with that, I said, is that my chronic fatigue symptom makes it feel like I constantly have a 50 lb weighted blanket on my body, so how am I supposed to exercise? Can we not work on the crushing fatigue? He didn't have any answer for that, but at least he had compassion and didn't gaslight me.
After that I kept looking and I have had breakthrough with Dr. Joel Wallach, who is a veterinarian/pathologist/agronomist/naturopathic doctor.
With a master herbalist/agronomist who works with Dr. Wallachs program, I did a hand scan called a zyto scan which measures galvanic skin response and it showed that my HYPOTHALAMUS was very unhappy. Interestingly enough, my friend who had a different form of dysautonomia, POTS, ALSO had a very unhappy hypothalamus when she did a scan. (!!!)
This makes perfect sense, and I had already theorized at this point that hypothalamus could be a root cause of my issues, as blood pressure or getting overheated (easily) was always my first symptom in the domino fall of symptoms, and guess what the hypothalamus controls? Blood pressure, body temp regulation, sleep, and hormones!!
(Me being a female mechanic, and trained to look for root causes NOT cover up symptoms)
The herbalist told me that she has seen time and time again that blood pressure issues both high and low are an issue with severe Calcium and magnesium deficiency. Funny thing is I was taking a calcium/magnesium supplement already. But Dr. Wallach's stance is that all disease is some sort of nutrient deficiency, and even supplements don't have all the co-factors that you need to ABSORB the nutrient in the part of the body that needs it. Co-factor being a nutrient or nutrients that your body needs in order to absorb another nutrient, i.e., in order to absorb potassium you must have sufficient vit D.
I was willing to try anything at that point (Feb '22) and what Dr. Wallach says makes sense, so I tried the calcium supplement that he developed with all the cofactors.
I started taking it, and craved it SO badly throughout the day mind you, and One month later - I had STABLE BLOOD PRESSURE sitting standing and walking, I have my life back!!
My scan also showed that I very badly needed jasmine essential oil. That turned around my intracranial hypertension in a WEEK. I have always been open to oils and all that, but I was still wondering why it helped. I found an article on PubMed where it says both jasmine and saffron have a chemical that reduces high blood pressure and spinal fluid pressure.
Because I had hit my head very hard the first time I passed out, I had become prone to head pressure feelings and increased migraines.
Anyway there is a TON that I have learned and obviously it is true because now I'm back to standing without fear of blood pressure falling, I have my life back and I'm both so grateful and so pissed off that it was this easy!!
Dr Wallach has tons and tons of videos out and he is saving lives and gicing back lives left and right, he is a true Godsend.
Feel free to email me at if you want to talk more, ***@****
hmm it's blocking me from adding my email...it is my username at gee mail
Oh and one other big thing, is that I absorbed the nutrients well and quickly because I am gluten free.
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