How do I keep blood pressure in check with Dysautonomia?

Posted by tacitsentinel @tacitsentinel, Jul 17, 2021

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.

Interested in more discussions like this? Go to the Brain & Nervous System group.

@tacitsentinel, There is an older discussion on Dysautonomia that you may want to view and read the posts to see if something sounds similar.

— Dysautonomia/Syncope: https://connect.mayoclinic.org/discussion/dysautonomiasyncope/

You mentioned in the other discussion you started that you had a work related spinal cord injury. Here is some information I found that may be helpful.

— "Autonomic dysreflexia (AD) is a serious cardiovascular disorder in patients with spinal cord injury (SCI). The primary underlying cause of AD is loss of supraspinal control over sympathetic preganglionic neurons (SPNs) caudal to the injury, which renders the SPNs hyper-responsive to stimulation." — Autonomic dysreflexia: a cardiovascular disorder following spinal cord injury: https://www.nrronline.org/article.asp?issn=1673-5374;year=2017;volume=12;issue=9;spage=1390;epage=1400;aulast=Sharif
— Autonomic Dysreflexia in Spinal Cord Injury: https://emedicine.medscape.com/article/322809-overview
— Autonomic consequences of spinal cord injury: https://pubmed.ncbi.nlm.nih.gov/25428850/

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@johnbishop

@tacitsentinel, There is an older discussion on Dysautonomia that you may want to view and read the posts to see if something sounds similar.

— Dysautonomia/Syncope: https://connect.mayoclinic.org/discussion/dysautonomiasyncope/

You mentioned in the other discussion you started that you had a work related spinal cord injury. Here is some information I found that may be helpful.

— "Autonomic dysreflexia (AD) is a serious cardiovascular disorder in patients with spinal cord injury (SCI). The primary underlying cause of AD is loss of supraspinal control over sympathetic preganglionic neurons (SPNs) caudal to the injury, which renders the SPNs hyper-responsive to stimulation." — Autonomic dysreflexia: a cardiovascular disorder following spinal cord injury: https://www.nrronline.org/article.asp?issn=1673-5374;year=2017;volume=12;issue=9;spage=1390;epage=1400;aulast=Sharif
— Autonomic Dysreflexia in Spinal Cord Injury: https://emedicine.medscape.com/article/322809-overview
— Autonomic consequences of spinal cord injury: https://pubmed.ncbi.nlm.nih.gov/25428850/

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Thanks for the reply. My spine doc did two sets of Bilateral epidurals. The first worked for 3 days. Second set was yesterday. I came home and had a massive bowel movement equivalent to 3-4 days worth. Doc said he sees no impingement on MRI. There's almost no disc material between the lumbar L4-5. He swears the intestinal issues can't be related, but I feel the pain going through to the back.

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One of my frustrations is that I'm in Atlanta, Georgia. We have the large and highly notable Emory Clinic all over the place here. Most of the hospitals are part of it and there are tons of doctors and specialists, but I can't find even a cardiologist that actually acknowledges POTS/Dysautonomia and/or will treat it. The first and second cardiologist didn't and I was pushed off to the third one who the second cardiologist described as "deals with people who have symptoms like mine." She said, "I can't fix this" after looking at my symptoms and said, "Do you want me to send you to the University of Tennessee?" I couldn't even find anything related to POTS there. What shocks me is that in this metro area of 7 million people, I don't understand why we don't have a center like the Cleveland Clinic or Mayo Clinic like other large cities have. It's not like I live out in the rural areas somewhere, I'm one of the largest and most diverse cities in the USA and world. One of the busiest, as well. Yet we don't have a clinic here and I'm puzzled.

I did recently find this clinic: https://georgiachiropracticneurologycenter.com/services/postural-orthostatic-tachycardic-syndrome-pots/ Can't find a 'dysautonomia' clinic, but I see one for POTS. Not sure if they will be able to help or not, but with no health insurance right now, I'm left waiting on worker's comp and paying out of pocket even when I get money from them. My heavy lifting days (most of my work experience) are gone and I'll have to find another type of job.

I hurt my back in November 2020 at work. I had been working at a warehouse for 1.5 years lifting 30 pound packages of product onto a shelf 6 feet tall and just generally moving 30 pound trays and packages from pallet to pallet hundreds of times per day. Coworkers complained of back pain, as well. Got misdiagnosed by the first worker's comp doctor. I was being treated for the Dysautonomia symptoms by my primary care doc since December 2019 and that worker's comp doc sent my employer a letter saying my back injury had healed and that it was the dysautonomia causing my lumbar pain (she admitted when I first started seeing her that she was unfamiliar with Dysautonomia). So that caused my employer to falsely file for FMLA for a "serious medical condition" and then I had to wait without pay for 4-5 months until insurance approved the spine doc. 1.5 months of physical therapy didn't help the back. The second epidural helped a little, but hurt WAY more than the first ones did. So I haven't worked since mid-February and they have been declining any checks at all, so doctor visits have been non-existent. Then blood pressure started spiking over the past week or two with the pressure feeling in the hands and face. Spine doc says I had some degeneration of the L4-5 vertebrae exacerbated by my work injury, so now they're being pressed by my lawyer to pay the thousands of back pay. Got court coming up in 1.5 months, possibly surgery and settlement. I do have a moderate bulging disc at L4-5 with very little disc material left and there is considerable compression that the spine doc said is affecting my legs. There is some fluid down around the L5-S1 vertebrae near the Sacral nerve. That fluid is in the facet joints and the spine doc said that can just happen sometimes. The outside calf muscles are numb on each leg in relation to what I believe is L5 due to the latest injection helping some. Doc won't acknowledge the attached nerve charts and symptoms that most spine places use nationwide. I'm puzzled. He's also the one that would do my surgery if I need it. So i was diagnosed with Lumbar Radiculopathy, which is a pinched nerve, but he noted no nerves being seen as visually pinched on MRI. They refused to do another.

The thing is…these loud stomach growls/intestinal gurgles, I've had them since I was in either elementary school or high school. My stomach can grumble when I'm hungry and you can probably 'feel' it if you're sitting 10 feet away. It's that loud/strong. This pressure feeling in the face with the red cheeks and hands, I've had that since probably my teenage years and I'm 38 now. So I'm not sure how long I've had this and if it has just progressed more when I was 37 or what. When I get some back pay, I'm planning to go for about $2,000 and get a full-body MRI just to have images at the aforementioned private MRI clinic so that I have images of everything once and for all. Sometimes it seems like moving my neck makes me dizzy and other times it seems like my lumbar. Then other times it seems like nothing and it just happens. I've been "shaky/jittery" with light tremors on and off thought to be benign since elementary school. Other kids noticed it and it was a common joke.

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Look up Texas Back Institute in Plano Texas they. May be able,to help you

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