How do I keep blood pressure in check with Dysautonomia?
38M 5'8 165 pounds. Since my high school years, I've had a lot of issues with brain fog, unrestful sleep, etc. I also had times since single digits in age where various parts of my body like my legs, arms, trunk of the body, etc., would turn reddish/pinking/purplish colors when I got cold, stressed or nervous. Also, for a large number of years, my hands from the wrist to fingertips would turn bright red when washing them under any temperature of water or doing anything working with them. Sometimes just walking in a store makes them very bright red. Arms are not. Only the bottom soles of the feet look really red sometimes but that's after walking on them all day. Prominent veins in the hands and also a slight reddish/flush hot feeling in only the hands and face at certain times of the day every day. I've had that for a long time. Docs had no idea why. Seems to be blood pressure related. When it's up, veins in the hand are prominent and when it's normal, they're not as much. They're red when it's up and face is pink when it's up, but they aren't when it is normal. What could this be? Palms are also red most of the time for no reason.
Saw docs earlier in life and nothing came about from it. Saw more docs in my 30's. Finally convinced once to send me for an in-lab sleep study.
I had a in-lab sleep study in 2018: https://i.postimg.cc/YCDHJfLj/1SS.jpg No CPAP given, said I didn't have sleep apnea. They wanted me to try CPAP, but I was about to have deviated septum/turbinate reduction surgery via my ENT doc hoping it would fix my sleep issues. It didn't. By the time I had surgery months later and had healed up, he wouldn't give me CPAP and I ended up buying my own APAP and used settings of 9 inhale/5 exhale after seeing that the APAP never went above 9 and 6 was the lowest that didn't make me feel out of breath. AHI was sometimes as low as flat 0.0 and averaging no higher than 1 or 2 for the whole night. See below – I had done a ton of research before doing this, so I wasn't blindly guessing.
I had one in mid-2020: https://i.postimg.cc/0N6sxM7n/2SS.jpg Suddenly central apneas popped up. BiLevel given for complex sleep apnea because CPAP complicated it. I don't know which is right. I feel awful whether I keep it on for 8 hours or not. I'm lightheaded nearly 24/7 and developed some sort of autonomic dysfunction in 2019 and docs and specialists don't know why. It started randomly every night around 10pm to 11pm. Lightheadedness, tachycardia, rapidly and wild fluctuations in blood pressure and heart rate, etc.
I've seen 2 primary care docs, had 3 ER visits in the first month because I was scared I had a heart problem, 4 cardiologists, had 3 one-month heart monitors, a Stress EKG (treadmill)/ultrasound/color flow, a tilt table test for POTS Syndrome (Not POTS, but sympathetic nervous system was found to be overcompensating), saw an endocrinologist for blood work/thyroid check, no adrenal gland tumors, urinalysis, tons of EKGs, VNG balance/visual testing, hearing testing, MRI of the brain, MRI/CT of abdomen/pelvis (mild bladder wall thickening noted). They all said I'm healthy.
Cardiology notes: Dysautonomia. Appears to have autonomic dysfunction exhibited by significant fluctuation of hr and BP also with a sympathetic response that is excessive (as seen on tilt). He has post-prandial hypotension and a constellation of other symptoms.
Echocardiogram findings: 1. Normal LV ejection fraction by Simpson's biplane MOD. 2. Left ventricular ejection fraction is 55%. 3. Normal right ventricular size and wall thickness. The right ventricular cavity size is normal. Global right ventricular systolic function is normal. 4. Normal valvular function. 5. Mildly dilated ascending aorta. 6. Ascending aorta diameter 3.8 cm (2.1 cm/m2).
I'm worried about that 55% and the baby aneurysm. I feel bubbling in my chest sometimes, but it could from my stomach. It bubbles sometimes when I move my left arm, for some odd reason. Chest pain seems to also be a symptom of autonomic dysfunction.
Primary care doc said Dysautonomia. No meds helped, but moderate dose of Sertraline helped a little. Gastro doc did an upper endoscopy and a couple of stomach biopsies. Really inflamed stomach lining. No cancer or bacteria found. I haven't had my colon checked yet, but since it hurts, I plan to get a colonoscopy at some point. I sleep terribly, my bowels/bladder act weird sometimes. When I take a step to walk, it's like the blood drains from various parts of my body with each step and feels really surreal with the lightheadedness that gets worse with moving single limbs sometimes. The room is not spinning, it's lighheadedness for sure. No vertigo. A couple of days ago I clocked a 180/110 temporary blood pressure. Other times it can be like 102/70 and anywhere in between. I sleep poorly and just feel the pressure in my face and hands on and off with a pink face. BP goes back down within minutes or hours. BP was 173/113 at the ER one time and went back down for no reason and they discharged me hours later. No idea why this happens. It can change dozens of digits in like a minute and then go back again.
I'm worried about my blood pressure spiking up even temporarily throughout the day to stuff like 180/110. I'm not lightheaded when that happens, oddly. But if it's 120/80, I'll be lightheaded. It's odd. When I first get up in the morning, sometimes I'm not lightheaded and other times I am. I'm not as lightheaded when I sleep less (5-6 hours) and the bp is in the like 130's 80's or 90's. When I get more sleep like 7-8 hours, I'm super lightheaded all day long and this puzzles me. Sometimes I feel better when not wearing the BiLevel and nasal mask and sleeping on my side/stomach where no apneas were recording. Other times I feel awful and wake up the next morning in a pool of sweat. I'm not one for night sweats.
I'm trying to eat less salt, but some docs advised to eat more salt when it is low. Obviously not a good idea when it is elevated a lot. I try to drink a lot of water (up to 70 ounces per day) and exercise on the recumbent bike. I'm scared to lift weights due to the bp issue and baby aneurysm. I've been getting more and more exercise intolerant since sometime in early 2020. The slightest things send my heart rate and bp up. Yet I can go jump on the recumbent bike and pedal for 20 minutes moderately. Yes, it will send my heart rate to 150-160, but I'll feel better while exercising, but will feel out of shape and sometimes slightly short of breath. I'll be lightheaded again a while after, but will feel a little better after exercise. My primary care doc seemed to not be worried because if it was my heart, he felt that I'd have the issues while exercising.
Any ideas from docs out there? I'm grasping straws at this point. Out with a work injury, lost my health insurance via work, pending court because employer won't pay benefits currently and got all of this going on. What remaining things should I have checked? I feel like my bowels may be having some kind of issues. They hurt a lot, but moderately dull aches or occasional burning. Mainly it's the bp and lightheadedness that is my worst issue. I did awful on meds like Metoprolol because when the heart rate was normal, it dropped it too low.