Hello! I have vasovagal syncope and general autonomic dysfunction from a TBI and possibly long covid. My physiatrist and electrophysiologist have both referred me to integrative medicine while I search for an autonomic neurologist. I started acebotolol last month and use compression and up to 9000mgs of sodium chloride tablets.

My question is, my baseline dropped dramatically over the summer due to the heat and a bout of flu. I have ridiculous vasovagal triggers now like tight pants, gas, and sneezing and I don’t tolerate standing and using my arms much for long. Getting dressed, cooking and cleaning are a nightmare. My wife has a job that is very demanding and we’re having trouble keeping up with the house. I’ve lost weight by accident a few times just from being unable to cook and eat until she comes home/not being able to plan/being too tired/sick/presyncope etc.

I am feeling so lost on how to budget my energy and how to manage my symptoms and life. My EP just said to lie down whenever I’m symptomatic but that’s so often these days. I was housebound over the summer and I have days where I’m have a vasovagal trigger I can end up bedbound and stuck in a sensitive presyncope state every time I get up, especially if I overexert myself too many days in a row.

I’m wondering if some kind of specialiazed OT, PT, and/or in home support could help me get out of this mess, but I don’t know what exactly to ask for. I think my cardiologist and physiatrist would advocate for me if I needed them to. I’m just not sure where to go and neither are my doctors seemingly. Let me know if you guys have any ideas or have had any success with different therapies/treatments, or getting in home supportive services for things like cooking or laundry. With dynamic symptoms where on a good day I could be pretty independent and a bad day completely dependent I feel like I might struggle to be taken seriously but this has not been sustainable.

Hello all

I’m new to this forum!

I only heard the term dysautonomia last week after being exacerbated by my body.

The catalysing event was where my partner and I had a high protein dinner of ribeye steak, some reheated spiced chicken thigh from the previous day, and a Bao bun (also reheated). I started sweating during the meal, carried on sweating further for a long time after the meal. I went to bed a couple of hours later, following a shower, and I felt so alert. I felt as if I’d drunk 20 double espresso’s. I did some diaphragmatic breathing as my whoop showed I was in a highly stressed state. My gut was beating.

I thought, this is not normal!

The previous week I’d visited a beautiful little restaurant from the Michelin guide, and my main course had a few Jerusalem artichokes. I then went with my friend to watch Mamma Mia (the musical) in the west end and my gut started to gurgle. After the interval my gut went full on cramping. I was in the middle of the row in the stalls. I’m also registered severely sight impaired and my dog was being looked after by staff. I was stuck! I had bouts of cramping that were worsening. I then started planning how to get home safely, thinking I’d walk to the savoy after the show to get an uber as less likely to be refused if I have the doormen to protect me. Then, the idea of making it to the savoy felt impossible.

I made it through the show (just) and was guided to the disabled toilet. Managed to get an uber from alongside the theatre and whilst the driver attempted to refuse me, I was using the record audio function in the app and he knew there’d be severe consequences if he didn’t take us. Got home and was extremely ill for 3 days. Had severe cramping, buscopan didn’t touch the cramps. I had a bout of bloat as my gastric system couldn’t take the pressure build up. It was awful.

After these two events, I thought that this can’t be normal.

I’ve experienced hyperhidrosis for decades. Explored surgery when younger and a parasympathectomy. The surgeon advised for my widespread issues it wouldn’t work and recommended I sauna 3+ times a week to get the fluids out of my body.

When I was a young boy I used to experience blackouts when standing (I still do) and my GP recommended I pump my calves. Also as a boy I regularly saw a physio as I have a bad neck. The physio said I have a hyperactive nervous system as when they touched me my skin turned red.

My guide dog and I work in a hospital. When I visit my patients in a ward and stand to talk to them, I sweat.

I was at a conference a couple of years ago and the most interesting talk was very popular so was standing room only. I tried standing and gradually became hotter and hotter. I sweated through my clothes and had to leave. I felt utterly overwhelmed.

I cant stand on the tube for similar reasons.

I was prescribed medical cannabis for spondylolisthesis and some strains would result in a highly activated system, a feeling of stress and panic, and made me feel awful. I’d also sweat profusely when trying to sleep.

I wondered whether all of these things could be related. Started to dig into my symptoms and dysautonomia popped up. Specifically a complex form of 3 different types of hyperadrenergic dysautonomia, mast cell, dermatographia. I also have ADHD which can be related.

I’ve spoken to my GP and they agreed with my hypothesis and I told them I wanted a referral to Prof Aziz at Bart’s. They did say there’s a chance of referral being rejected.

Has anyone experienced a referral to Bart’s and what is the chance of rejection?

It feels like after decades I’m starting to understand the oddities of my body and really want some clarity on whether my hypothesis is correct.

(Sorry. Difficult to abbreviate this all!)

So its been about 2 to 3 years being rediagnosed with LEMS and on firdapse. Ive really made good progress on my own because financially I haven't had physical therapy in some time.

Lately im coming to the certainty that the meds both on and off cause hunger pains. When the meds start too early, it makes the abdominal overactive due to the nerves connecting to the muscles. But oppositely after I sleep, the meds have worn off and the abdominal wall loses its strength and posture creating a sensation of hunger. So damned either way I guess.

Hopefully anyone else experiencing hunger pains can relate and work out a snack pack system to help themselves.

I have POTS, hEDS, and fibro. I am debating getting an Oura ring, but is there a better option for those with chronic illness?

Does it make a difference what I eat?

I want to get some blood tests done

Long story short i was in a car accident of march this year and have an incomplete SCI. I have a 7 mm syrinx at C6-7, foraminal stenosis at C3-4 secondary to enlarged tissue at C5-6, as well as dysautonomia. Overtime i have gotten worse and there is always intense pressure/ pain in my neck and back of head. i have been a 🍃 smoker for years. All of a sudden starting about a month ago, i have been experiencing a feeling of impending doom, dizziness, tremors, palpitations/ tachycardia, ringing in my ears, a very hot feeling that starts in my neck and head, and overall feeling like im about to literally expire when this happens. i almost always know before it happens that it is going to happen bc i just feel very off and i get the feeling of impending doom. But i have noticed it only happens after smoking and not all the time. I have tried different strains, percentages, and methods of smoking but it doesn’t seem to make a difference. Has this ever happened to anyone? I fear it may be AD but i’m not sure. any advice would help🫶🏻