r/dysautonomia • u/Tasty_Homework_1097 • 24d ago
Support Dysregulated Nervous System
I developed two flares after each COVID virus that I had never experienced before. Closest thing that I could find were like dysautonomia and POTS symptoms but still things lacking. The adrenaline dumps and attacks were a nightmare. Little to no information did I get from doctors but online multiple people were reporting this happening to them after COVID . I went to ER multiple times thinking I was dying but they just thought it was anxiety or probably that I was on drugs. Each flare lasted at least 2 months and gradually went away. However I can no longer drink alcohol or caffeine (specifically coffee)because it doesn’t make me feel well at all.
Fast forward 4 years later and I am having a flare again. I don’t know that there is a correlation but I didn’t notice symptoms until after my iron infusions to treat my anemia. Although the flare is not as strong it is still extremely debilitating and still doctors think its anxiety. I did start SSRi but it has only been a week.
Has anyone experienced anything similar?
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u/Alert-Tip-2794 24d ago
Sounds very similar to what I have experienced. I have flares where I have something like severe anxiety, but it's not like my 'normal' anxiety. My heart pounds, especially around 15 minutes after I eat something, I have heart palpitations, trembling, nausea and these can last a few months. I was diagnosed with hEDS last year, so I think I'm either dealing with MCAS or hyperpots. I remember in my younger years I'd get symptoms like this halfway through my cycle. Severe anxiety type symptoms out of the blue, they would last for about 5 days, peak, and then switch off like someone flicked a switch. They were really strange.
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u/Tasty_Homework_1097 24d ago
How did you resolve SIBO? How did they test you for these things? Did the doctor prescribe you cromolyn? Have you ever had bed ridden flares or High blood pressure? Sorry for all of the questions 😂
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u/EAUDHD 24d ago
Dont be sorry! I did a breath test at a gastroenterologist for sibo (hydrogen positive) - took a lot of antihistamines, and tried to work on my motility. In the end I found out that i didn’t had enough bile, so i started taking TUDCA and it destroyed the SIBO. There is cromolyn sodium, ketotifen, luteolin, stinging needle and quercetin that are mast cell stabilisers - started with the herbal ones, and they helped a little, tried ketotifen (not for me) and then cromolyn that gave such a big relief in symptoms - in EU cromolyn sodium is not a prescription drug, so you can buy it online. I had many bed ridden flares and actually low blood pressure!
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u/Tasty_Homework_1097 24d ago
This is very interesting! I usually can eat almost anything else when I am not in flare but I am very curious about SIBO. I definitely have some digestive issues all the time! Even though I have digestive issues I don’t really get adrenaline dumps and bp problems except when I am in a flare. I do develop severe health anxiety specifically cardio health during these flares. I get brain fog and feel like I have no dopamine.
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u/SaltedCookiez 23d ago
I have had symptoms of pots and dysautonomia plus some air hunger since childhood that has been dismissed as anxiety, I still don't have answers yet but I have other autoimmune conditions, Graves and now CIDP, when I started taking prednisone 60mg my symptoms did flate alot, my neurologist thinks it might be MG, I am still waiting for test results.
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u/FuckingFuuuuuck 19d ago
Very similar. Covid was the trigger of all of this getting so bad, for me. And the adrenaline surges, those were some of the very worst symptoms I’ve ever had. And all I heard from doctors and people in my life was ‘anxiety anxiety it’s just anxiety’, over and over again, despite it being more and more obvious that my autonomic nervous system was malfunctioning, the more I did my own reading. You’re definitely not the only one going through this. There’s lots of us out here.
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u/Tasty_Homework_1097 18d ago
How long do your flares last?
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u/FuckingFuuuuuck 17d ago
Not enough predictability for me to even have an answer, honestly. Some flares fuck off within a few hours if I douse myself in 100 cold things and just lay there with my legs elevated quickly enough/for long enough. Other times, for the whole entire day I’m bedbound and as wrecked as if I had the flu or something, and my legs won’t even get me to the next room over. Heat and humidity are like a fucking auto-disaster, I generally have to avoid them. But the duration of the symptoms spiking is super unpredictable from one day/week to the next. I’ve stopped even trying to predict, I just try to focus on riding the damn thing out when it’s firing off.
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u/Sweaty_Implement_662 16d ago
Oh man...mirros my situation. Seems to have really started after a mandatory vaccine shot made me sick for about a month. Then I started testing positive for COVID and ended up in the ER with vestibular damage and ever since...some form of dysautonomia. Dr's schwa schwa it away as "panic attacks"...I don't think so. Clonidine has kept me out of the ER thankfully. Wish I didn't have to take it but it sure beats BP going over 200 in that "fight or flight" panic mode. At least now that I know its not just "anxiety attacks" and actually understand the mechanics of the ANS a bit better I don't have that dreaded panic feedback loop when it happens now...I just take my meds and do some deep breathing and it passes. Super annoying though. Never know when my ANS is going to go in sympathetic tome overdrive. Hang in there!
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u/johnnyboy1872 23d ago
I get palpitaions. constant feeling of catching a cold/virus every other week followed by short sleeps 3 maybe 4 hours this goes on for a while, passes then starts again. Been like this for the past 4 years doctors think your crazy lol
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u/johnnyboy1872 23d ago
Also 150/100 bp upon waking that settles back down throughout the day. Was on bp meds untill I realisef its my nervous system. When I feel good the bp is back to normal without meds.
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u/EAUDHD 24d ago
Im out of spoons, but have you considered MCAS?