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.