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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.
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Avatar universal
I had the same thing happen to me out of the blue and insomia is my main issue, but I also have the shortness of breath, dizziness standing. I lift and run every day and extremely physically fit. All tests of heart, etc show I am perfectly healthy. Research I have done points to overtraining syndrome. Everything you describe about feeling your heartbeat and secondary dysautonomia. Now I reduced exercise intensity, eat more regular meals (had been fasting, low carbs), and never do any strenuous activity after 4pm so I can sleep. Also, increasing fluid intake and salt, like gatorade and salty foods seems to have helped. I am going to get tests at endocronologist tomorrow but doubt anything will come of it.
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Avatar universal
You’ve described almost to the “t” my symptoms for the past 20+ years. I just received a diagnosis from a new cardiovascular doctor this past week; POTS. I read that it can be triggered by traumatic blood loss (one among other  things) which I experienced during the birth of my first child and came near to death, 22 years ago.

I had so many tests and procedures done in the first 10 years that kept coming back normal, that I began to feel like maybe it was in my head. Once I purchased an Apple Watch and a blood pressure cuff, I was able to record what was happening when the episodes would just come out of the blue. This at least gave me some validation that I was not imagining it or creating it.

I use to have the adrenaline rushes along with the episodes, which always seemed to worsen them, until I finally came to peace with dying. Seriously, just trusting that my days and purposes are appointed and that as long as I am pressing into the One who gave me life, I will accomplish what He put me here to do. I can be having an episode now while having a conversation and no one knows. I push it to the back of my mind and focus all of my attention on the person(s) in front of me as if this might be my last conversation with them; so, how can I add eternal value to their lives in this moment? Living with these symptoms has caused me to live more intentionally, for sure. Please don’t take this as me saying “get over it and just get use to the idea of dying!” LOL! This is just part of my journey and how I’ve coped with certain aspects of this condition.

I have to say that receiving the diagnosis was a relief in some ways, even though I am still asking questions. “Autonomic disorder” would equate to brain dysfunction, right? Does family history of Alzheimer’s play into this? I am scheduled for a cardiac MRI with contrast tomorrow morning to look at my entire vascular system and just put a call in to my doctor to see if I should also have imaging of my brain done at the same time. (The contrast has made me sick in the past and I am not looking forward to doing it again…so let’s just get it all covered. LOL!)

Like you, I hope to find solutions, but what I have learned is that the consistent exercise (daily walking routine) is a huge component to minimizing the symptoms….likewise, water and sodium, and a big one for me: potassium. Every ER visit I’ve had over the past 20 years (maybe 5), bloodwork has shown low potassium. I can usually just stick a few tablets under my tongue and it bring me out of a dive quickly.

I hope this is helpful. If nothing else, to at least know you are not alone.
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2 Comments
As an update:

It is POTS. I've since had a number of doctors diagnose it. I believe it to possibly be Hyperadrenergic, because the heart rate and blood pressure fluctuates constantly. Trauma, various medical conditions and even contracting simple viruses can cause POTS. Even Covid patients now are showing signs of POTS/Dysautonomia because it is a virus. I have to watch the salt level, because I have seen my blood pressure up to 180/110 before, but that's still considerable low compared to some of the people on the Reddit POTS forum.

Now let's talk about the dysautonomia. There are a very large varieties of Dysautonomia. POTS is "a" dysautonomia and there's 3 to 4 versions of POTS, as well. One form is also Secondary POTS, meaning that an underlying disease or condition is causing it and if you find that and get rid of it/treat it, the POTS goes away. It can be sleep disorders like sleep apnea and a number of other things like serious medical conditions and diseases.

As for your comment disorder, yes, dysautonomia is essentially the body's Autonomic Nervous System malfunctioning. I'm not aware of any Alzheimer's link to POTS/Dysautonomia, but there could be.

FYI, I had imaging of my brain done with both contrast and non-contract MRI. It showed a healthy brain, no MS lesions (what my doctor was originally checking for), no tumors, no issues. I also had a Stress EKG (treadmill), wore 2 heart monitors for a month (no arrhythmia) and had an Echocardiogram that showed a 3.8cm Aortic Ectasia (baby aneurysm in the aorta a distance away from the heart). Some people on a forum told me that could be Ehler Danlos-related, but I haven't been tested for that and some people with it also get POTS due to "stretch veins/arteries" and such. The Aortic Ectasia is something that you just keep a watch on every couple of years and it grows very slowly and may not even grow at all for some people.

So here's my list of diagnosis after 2 primary care doctors, a neurologic, couple of sleep doctors, endocrinologist, blah, blah, blah:

1. Postural Orthostatic Tachycardia Syndrome, also known as POTS Syndrome.
2. Dysautonomia, which is the term used generally to refer to malfunction of the Autonomic Nervous System that controls everything involuntary; breathing, heart rate, blood pressure, etc. My body malfunctions 24/7 and I have terrible sleep no matter what we have done to try to improve it.
3. Complex Sleep Apnea Syndrome. I am on a BiLevel breathing machine similar to a CPAP when I sleep. They found 29 central apneas (the body "forgets" to breathe for a period of time while sleeping) during something like 89 minutes of sleep, if I remember correctly.
4. Delayed Sleep Phase Disorder. I'm not sleepy at night and "wired" at night like many POTS people.
5. Generalized Anxiety Disorder caused by the Dysautonomia/POTS that surges the body with adrenaline.
6. Recent VNG (eye/brain coordination) testing on 11/30/2021 at a local Chiropractic Neurology Center (this is known as a "Functional Neurologist") showed that my eyes exhibit square-wave jerks. When I look at something, my eyes "jump" from side to side rapidly. This makes it difficult to read things properly, causing me to skip words in the middle of sentences and affects mental focus in general. My middle brain is also malfunctioning (that's responsible for eye movements), as are my pupils (known as "hippus" - they get larger and smaller rapidly without regard to light or darkness only), my entire body is hyperreflexive (jumpy/choppy in muscle movements since I was a kid) and it even affects my voice and breathing at times. I haven't been back to them because their treatments are $300 three times per week for likely a year or more to 'retrain' the plasticity of the brain to not malfunction. All doctors have been puzzled at my conditions, but the functional neurology, no matter how 'despised' they are by MD doctors (they're technically chiropractors who also deal with brain function, treat balance disorders and such)...they recognized my symptoms immediately by seeing them. They knew what part of the brain corresponded with it, as well. My neurologist discussed none of that stuff and was rather haughty.

Mid-2021, my primary care doctor moved away. He knew a bit about the dysautonomia/POTS. He said his replacement would know about it, but she actually knows way less and is a DO doctor. She told me in a message basically that she can't do anything for me and to see my neurologist. The neurologist had his nurse tell me that he doesn't know what to do about the dysautonomia, yet neurologists have more of the condition on their side than the primary care doctor and that's also what the primary care doctor said. The neurologist told me to find a "specialist in dysautonomia" for my symptoms. There are some states with literally one or two doctors who might specialize in it, but they're likely very expensive and/or far away from both of us. I'm in Atlanta and the closest one to me other than Georgia Chiropractic Neurology (the above mentioned functional neurologist that I saw - Dr Marc Ellis, known worldwide for helping complex patients) is in the Florida panhandle. There's a website called Dysautonomia International that may be of help to you in finding more POTS/dysautonomia-focused doctors.

Exercise does help, but it depends on what type of POTS you have. You can never go wrong with exercise. The body needs it, sick or not. My blood pressure seems to drop just a little and raises more than it seems to drop. Other people with another form of POTS (the ones who need lots of salt) stand up and nearly faint due to low blood volume/salt not being retained well in their body. In my case, too much salt is bad. Caffeine helps a little with me. I think it may help constrict the veins/arteries in the legs a little more or something and helps me feel better for a short time. Lots of water is a good thing, but my condition causes me to have to urinate very, very frequently (5-10 minutes apart if I drink say a whole bottle of water; 30 minutes later it will  be on the way out quickly).

I applied for Disability temporarily because I can't work or drive with my symptoms (never been able to drive anyway at 39 years old). Planning to see more doctors when I can get some insurance.
Hi All, there’s a great clinic in Birmingham, AL- The Dysautonomia/MVP Center (Rocky Ridge is actual location). They’re cardiologists who specialize in the disorder. They do tilt table testing and many other tests. They know how to help!
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.
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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.
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.
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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.
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4 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.
I have been having POTS symptoms after getting COVID. I have issues with my HR and oxygen every time I stand. I have fainted also and i get chest pains and headaches. The Drs I go to have no clue how to treat. Any in Los Angeles or Orange County you may know of? It is so frustrating to not be able to do anything that requires you to stand without feeling dizzy and like your going to pass out.
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