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What causes Dysautonomia/POTS to randomly pop up?

37 year old Caucausian male, 5'8 and 150 pounds. Fit and muscular for all of my life.
It started back in December of 2019. I was getting ready for bed one night and had a racing heartbeat, trembled all over, had so much adrenaline that I felt like I could barely walk, Systolic blood pressure went up as high as 170's over 90 and 100. Other times just the Systolic would go up. Sometimes my face and head would get really red even while in the ER. Then the heart rate and blood pressure would bounce up and down. I had severe stomach pain. They blamed it on anxiety.
Over the months, I went to:
ER 3 times between December 2019 - January 2020. EKG, lots of blood work, contrast CT scan of the abdomen. They found nothing wrong and no reason for my blood pressure to have gone up. It typically went back down 4-6 hours after being at the ER.
Endocrinologist - Nothing wrong with my thyroid and had a physical exam and blood work.
Cardiologist right after the first event in December 2019. I had a full Stress EKG with ultrasound of the heart immediately before and after walking on the treadmill. They said I was healthy.
Then in February 2020, a family member got a stomach bug and it went to all three of us in the household. They had violent vomiting and black diarrhea. I just had days of black diarrhea.
Gastroenterologist - my stomach hurt a lot. He did an EGD and saw an inflamed stomach lining, but biopsy results were negative for cancer and bacteria. I took Proton Pump Inhibitors for 6 months and it was still inflamed.
Primary care doctor - lots of blood work and nothing found. MRI of the brain and brain stem. He said it looked excellent. No sign of any strokes, aneurysms,  tumors, multiple sclerosis or any other structural  brain disease. He said that he is extremely confident that there is no heart problem, lung problem or brain problem.
He has apparently had a number of Dysautonomia/POTS patients over the years. Apparently medical research doesn't know a whole lot about what to do about this. I apparently have Dysautonomia and the POTS is apparently the secondary effect as a result of it. If I stand or sit a certain way, I feel odd and out of it, dizzy, shortness of breath, etc.
A 2018 in-lab sleep study showed 4.7 AHI and a high number of arousals (about 50 in 2.75 hours).
A 2020 in-lab study showed apneas/hour. I tried APAP. They figured out in the lab titration study that CPAP wasn't working for me, but BiLevel did with a moderate pressure of 9 inhale/5 exhale. I was having a ton of events on the BiLevel until they raised it up to 9 inhale/6 exhale. Now I am under 1 AHI every night consistently. On camera at home, I toss and turn all night, sometimes many times per hour and sometimes just minutes apart I will shift just a little bit, move an arm or leg or wake up briefly to look around and go back to sleep. Both in-lab studies found no evidence of Periodic Limb Movement Disorder or Restless Leg Syndrome. I don't have any jerking or twitching. I just move one arm or one leg in a consistent manner of just simply waking up, look around as if wondering what happened, then I go back to sleep. Could this be Dysautonomia/POTS that was creeping up?
Nobody in my family has had it that we know of. My doctor said some people get it for x months or a few years and it just goes away and they "grow out of it" in the same sudden way as it came.
I'm on 25mg Zoloft once per day and today was day 2. My stomach hurts sometimes and my body is reeling from what is apparently malfunctioning of the autonomic nervous system. I still get short of breath, have no energy and feel odd more so when resting than when I'm at work or home doing something strenuous. Exercise and lifting stuff to stay busy keeps me feeling normal. When resting at night, I'll feel little muscle jerks all over and can "feel" my heartbeat in my fingertips and various parts of my body that I didn't previously feel it. Apparently people with Dysautonomia "feel everything" as my doctor put it. Can someone out there give me a glimmer of home with advice?
I've increased salt intake daily (about a teaspoon per day split into halves), I try to keep hydrated with water and electrolyte drinks. I try to exercise regularly. I'm taking the Zoloft. Anything else help? I get the random muscle twitches from head to toe, as well. I haven't fainted officially, but I've felt that I have come a little close to it sometimes when leaning slightly forward over the sink washing my hands or sitting on the toilet. I know that viruses can sometimes trigger Dysautonomia, but I had the dizziness back in December months before the stomach bug, so it wasn't that. We don't think I have a disease. Why would I randomly have gotten this? Doc doesn't feel that tilt table tests work very well or tell us anything new and wouldn't change anything. I've noticed that it gives me an unsettling "anxiety" feeling sometimes, which hopefully the Zoloft will help with a little bit, too.
3 Responses
20748650 tn?1521032211
Do you faint? Does your heart consistently race while standing?

While this certainly SOUNDS like primary hyperadrenergic POTS based on symptoms.. consider that:

1. You’re male
2. You’re fit/Active
3  you’re describing a fluctuating heart rate not a consistently elevated one. You’re description of the racing heart at bed with adrenaline rush fits POTS but your description of the ER does not.

You have not been properly tested for pots by the looks of it? Did you get a full blown tilt table test? If not I wouldn’t assume that’s the correct diagnosis until it’s proven with a test.

You have at least 3 aspects of your history that seem to sort of point away from Dysautonomic/Hyperadrenergic POTS as a diagnosis. I would be concerned that POTS was being given as a diagnosis of exclusion (Ie they don’t know what it is but pots is the most likely thing left). This is somewhat inappropriate given that we have actual testing that’s diagnostic for this.
3 Comments
My primary care doctor did test me by checking blood pressure/heart rate upon lying down, sitting and standing. It changes rapidly. It also triggers the "irregular heartbeat" icon on an electronic blood pressure monitor at home. That indicates a change in heart beat of a least 25% between the start of the test and the finish of the test (about 30 seconds). Sometimes multiple readings back to back will show varying results. E.g. one time it might show 135/80, then the next one a minute later might show 105/70, then the next one a minute later might show 120/80 with an irregular heartbeat icon. Another time it won't show the irregular heartbeat icon and will be more normal.

However, my doctor also stated that they don't really use tilt tables that much anymore and it wouldn't exactly prove much. Indeed, there aren't many doctors in my city of millions of people that actually do a tilt table test. Also, upon changing my own position from lying down or sitting to standing, I get the blood pressure drops/spikes and heart rate drops/spikes. I also get more dizzy if I'm standing and lean slightly forward (such as over a sink washing my hands) with my upper body.

I've had two different doctors tell me to take in more salt.
The title table test is still what’s used by most specialists to diagnose. I’m surprised by doctors saying it’s not a tool that’s used. If i were you, I would ask for a referral for autonomic testing with a dysautonomia neurologist.
I'm replying here because I can't get the general reply to work.
I have been diagnosed with NCS which is Neurocardiogenic Syncope, a form of dysautonomia similar to POTS but much more random.
I've talked with a friend who has been diagnosed with POTS and she also has been to naturopathic Dr who has helped her very much.
For some reason the mainstream medical community does not acknowledge a syndrome called by naturopathic Drs AFS, or adrenal fatigue syndrome.
You can look it up, but essentially the body is not made to deal with stress like we experience it today, and it causes your autonomic nervous system, particularly the sympathetic and parasympathetic systems to go haywire. Whereas NCS explains 85% of my symptoms, AFS explains 100%.

There are 4 main stages, I am quite sure I'm in stage 4, which also has 4 sub-stages. I'd say I'm in stage 4-3 disequilibrium, as my oxygen, pulse and bp go every which way when I am doing anything other than lying down. I have passed out, the first time Oct 2020 was the original event that started this painful journey. My cardiologist has seen my pulse go from 110 to 40 in a split second, and that's when I pass out or feel very close to it. I've seen at home that my oxygen takes dangerous dips, one time to 72% after 3 minutes light chores. I have had much improvement in digestive issues, insomnia and migraines since going gluten free.

Please consider naturopathic testing, I am beginning appointments over the phone because I don't have any Drs of that type close, and I don't feel safe driving most days. They can send you test kits in the mail, and in my experience they listen so much better.
Avatar universal
Your Stomuch related problem could be gastroparesis.

Gastroparesis is a syndrome where an individual has objective or laboratory documented delayed gastric emptying of food from the stomach to the small intestines in the absence of any mechanical obstruction or blockage in the Gastrointestinal (GI) tract. 

Symptoms of Gastroparesis include early satiety, nausea, vomiting, bloating and abdominal distension, upper abdominal pain and at times .
anorexia.

Feeling dizzy on standing up is a clear case of Orthostatic intolerance.

So you are showing symptoms of autonomic dysfunction but you need to be thoroughly examined by an experienced and expert doctor because in autonomic disorders are similar. So every patient receives a custom treatment and medication. So if you need help please do let me know, I can give you a good reference.
Avatar universal
I had the tilt table test. From the minute they hooked me up to the vitals machine, my heart rate and blood pressure were moving up and down rapidly. Sometimes heart rate changes second by second quite quickly, but not enough for POTS Syndrome per se. Tilt table test was negative because of that. She cardiologist doing the test also gave me a little pill of Nitroglycerin to take, which she said would open up the veins/arteries wider and simulate blood pressure dropping to see what the body does. Well, theoretically while at a vertical 90 degrees, it should have made my heart rate increase to keep pumping blood. Instead, my blood pressure fell to 98/56  and heart rate fell to 40 and I fainted. Instead of increasing, heart rate decreased. She said this is a sign that my Sympathetic Nervous System malfunction. MRI of the brain was fine. All blood work fine. MRI of abdomen only noted mild thickening of the bladder wall for an unknown reason. Sertraline from my primary care doc seems to help a little. I also still get very winded and exhausted from exercise. Light pedaling on a recumbent bike sends heart rate to 150+. Stress Test, Echocardiogram and all of that showed that my heart is fine and strong. Endocrine doc said my thyroid is fine. No adrenal tumors. Nothing has been found to explain why I have dysautonomia. I'm also in the state of Georgia and we apparently have zero dysautonomia doctors at all in this whole state, including in one of the largest metro areas in the world (Atlanta) where I live. It's ridiculous.
2 Comments
Had to get another username...my old one was having issues.
That makes me so sad. I’m going to U of M where they have a dysautonomia clinic and a dysautonomia department in neurology. I wish so much everyone had access to specialists. I’m so sorry.
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