37M Caucasian 5'8 150 pounds. Always been healthy and fit, no drinking, no drugs, no smoking.
December 12, 2019 I was getting ready for bed about 11:00pm and my heart started racing out of nowhere, I became dizzy, faint, had trouble walking, shortness of breath and felt like I was pumped full of adrenaline. Between December 2019 and January 2020, I ended up in the ER 3 times. Elevated blood pressure as high as 173/100 that went down on its own after 4-6 hours. Around the second or third ER visit, I was having burning stomach pain. ER did blood work every time, including stuff like cardiac enzymes to check for heart attack. I had a contrast CT scan of my abdomen and had my organs checked. MRI of abdomen. Had lots of EKG's. They found nothing.
I've been to a couple of primary care doctors, tons of blood work. Hospital referred me to a gastroenterologist. He did an upper endoscopy and saw only a swollen stomach lining. Biopsy showed no cancer or bacteria.
Cardiologist put me through a full Stress Echocardiogram on the treadmill, they reviewed my resting heart and immediately after the treadmill with ultrasound, checked Color Flow/Doppler. He said my heart was strong and fine. My blood pressure was 160/90. He blamed anxiety. His notes say: "Palpitations, precordial pain, dizziness and giddiness, abnormal electrocardiogram, his ECG shows sinus tachycardia and poor r wave progression."
Went to an endocrine/thyroid doctor. Nothing wrong with thyroid and had blood work.
Sleep doctor did an in-lab sleep study. In 2018 I had one for being exhausted all of the time and they saw 4.7 AHI and 18 RDI. But this time in 2020 just a few months ago they found 64 apneas/hour. I had lab titration and CPAP wasn't working, so they switched it to BiLevel and it worked. My AHI is now 1 and below. I've been dizzy since December. I've got orthostatic hypertension sometimes and hypotension sometimes. I've awaken at 4:00am and taken my blood pressure. 154/129 with 71 pulse rate. Irregular heartbeat icon showing on the monitor. Just a few hours afterwards I took it again and it was 140/91 with 88 pulse rate. Irregular heartbeat icon. A few hours after it was 105/78 with 72 pulse rate.
I have an upcoming appointment with an electrophysiologist for a tilt table test. He's the only one in my city that I could find. My doctor referred me and also a sleep doctor/neurologist. I get these electric-like jolts where I nearly drop stuff throughout the day at work. If I go to drop something, my whole body jumps in reaction instead of just moving the hand/arm to try to catch it. I've had that since I was a kid and nobody ever found anything. I've been to a neurologist in 2018. She said I had normal reflexes and she later retired. They are excessive compared to a normal person. Everything from a simple knee reflex check (kicks out twice what a 'normal' person does) to sitting in a chair at the doctor's office. When I scoot back and my hair brushes the back of the chair, my body "jumps" live I've just hit my head. I've had that reflex issue for most of my life and haven't found anything so far. My primary care doctor things I've developed Dysautonomia/POTS. When I mowed the lawn the other day for 10 minutes, my heart was pushing 160-170 beats per minute and was still at 150 with a normal blood pressure 5 minutes after I had been resting. I get tired easily and I sleep very, very poorly. My sleep cam shows me tossing and turning minutes apart all night, even on BiLevel. If I sleep over about 6.5 hours, I'm dizzy all day. If I get less than that, I'm not as dizzy, but super tired. Sometimes my ears just start ringing and my blood pressure drops for seemingly no reason. I've been told to consume more salt.
My primary care doc did a brain MRI with and without contrast to check for stuff like MS. It was clean. What could be wrong with me? I'm at my wits' end. My sleep is not restful. I move an arm or leg just an inch or two (with a single movement) all night long x minutes apart and the camera motion sensor catches it. Sometimes I just appear to wake up with no movement, as if irritated. That's while on BiLevel. I have malaise every single day from no particular part of the body. It is all over tiredness and fatigue. I've had 3 in-lab studies and none of them detected Restless Leg Syndrome or Periodic Limb Movement Disorder. Yet I see myself move. I even had one study where I was the only patient in the place and she literally watched me all night.
POTS is apparently a form of Dysautonomia and is sometimes secondary as a result of a condition or disease. But what exactly would we be chasing? We're running out of stuff.
I get sharp pain in my lower back, as well. Particularly when standing up straight from sitting or lying down.