r/dysautonomia

I have a perfect right side stellate ganglion block for my endless sympathetic dominance and hyperarousal yesterday. Horner's syndrome, warm/numb ear, cheek, neck, and shoulder. All signs point to "the stellate ganglion is block now."

But my heart rate stayed elevated. I didn't take my ivabrandine or verapamil yesterday because the doctor was afraid i'd have brachycardia with those once the ganglion was blocked, but low and behold, it was just a day of my natural heart rate. It was staying at 95-115 barely moving around. I tried to minimize any physical imputs and laid in bed still for 7 hours and the whole time my heart rate stayed at 89-95bpm.

How can my heart be going when the ganglion is shut down? What is driving my sympathetic drive and endless insomia?

Only thing the SGB specialist doctor said to me was "well maybe it'll work if we do the left side for another $800!"

I'm just utterly baffled. How can the body stay hyper alert when the ganglion is blocked!?

I’m curious what, if any, other heart/neurological/health issues have you ever heard of being misdiagnosed as POTS/dysautonomia — or alternately what issues have you heard of being masked temporarily or going undiagnosed longer because the person already was diagnosed with POTS/dysautonomia and the new symptoms of the new issues were at first assumed by the patient and even more importantly doctors to just be POTS/dysautonomia related?

Personally so far in my 5+ years as a middle aged man diagnosed with newly arising POTS/dysautonomia and no other really connected issues with a clear diagnosis (except suspected long COVID but even then I have a pretty unusual presentation of that with minimal ME/CFS, mainly just POTS and newly developed respiratory allergies and maybe worsened GERD though not even sure how much worse it is vs. more acknowledged) , anyway in my experience with POTS/dysautonomia the nature of my orthostatic symptoms change SO OFTEN, usually cycling, other times totally new ones cropping up or others disappearing seemingly forever or long term, it’s hard to really know which signals from your body to pay attention to any more LOL. I tend to assume everything is just POTS/dysautonomia!

I’ve seen one detailed account on Reddit of someone being misdiagnosed with POTS for years when they had hypertrophic cardiomyopathy, but literally only one account and I don’t have any evidence that is anything but extremely rare.

I know this is something a lot of us struggle with. Not every time - but a lot of the time when I eat lunch, I have to fall asleep afterwards. If I don’t lie down, I would fall down asleep.

It got so bad I stopped eating when I was at work. Now that I work remotely, I do eat lunch, and obviously eating well is pretty important to my overall health. But it’s still pretty inconvenient to have to crash out after eating.

If you’ve found a way to stop it happening, what works for you?

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im struggling to find this described anywhere in literature or in posts online. maybe someone knows what this is or has experienced it.

\- occurring the last 15 years

\- Can experience no sleep up to 4 days unmedicated

\-Occurred before I was medicated, can occur in extreme exhaustion, occurs with sleeping meds

\-Can be sedated for hours (various sleep meds over the years) but I dont fall asleep until I am hit with this sleep tsunami

\- I feel extremely unwell when this occurs, I am virtually non functional, its feels like I am being pulled/falling, I immediately try to go with the wave and get comfy. I am usually asleep within seconds

\- If I dont go with the wave (very short window) I could be hours waiting for another wave to hit

\- its very to interrupt it, for instance if I need the bathroom

I hope Im not the only one. I also have mecfs and POTS.

I would get the Marena and the Cean compression body suits,

and an alphacool active cooling vest.

And maybe one of those swim against the resistance pools.

I'm actually curious. Since some time ago I've been feeling like crap every time I wake up or have breakfast/lunch/dinner so me and my parents made some research. We found that using stuff like a binder that looks like a corser when I eat helped instantly. The same with other stuff I added to my everyday life.

So, what are some stuff you found works for you? Even if it's the most dumb sounding things, if it made a change I'd like to know about it :D!

I live with severe autonomic dysfunction and what I’ve noticed is that the only thing that helps me feel a bit better is if I don’t eat. I don’t get my usual symptoms and I generally just feel better. It’s like everything gets triggered if I put food inside my body and it has to start the digest process.

The last two weeks I’ve only been eating around 500-1000 kcals per day and as soon as I start to eat more it’s absolutely unbearable. I become bedbound and sometimes I can’t even move. I’ve lost a lot of weight obviously lately and have never been this skinny before. I’m glad Iv’e found something that helps but how is this a long term solution though?

My doctor had brought up how some people stop their periods with birth control because of how horrible their symptoms get before on and after their period. I am interested in this but I thought I’d ask for some peer input; so if you do have experience with this were there any side affects? Was it worth it? Any other feedback?

I have ADHD , I take Adderall for it . If you take medicine for ADHD how does it affect you ? I have AAG A Autoimmune Disorder +Dysautonima . I can’t do a lot at a time, yesterday I went to town and paid bills, ran errands I was gone 2 hours and was completely exhausted. My legs feel like the muscles don’t want to stretch out when trying to walk even shorter distances . When I lay down to rest , my brain is wide open , steady going through everything I need to do . Just like 200 open tabs in my brain . Of course I notice an increase in HR it usually gets to like 114 and my resting HR is around 67-72 .

Hi! I have been experiencing symptoms which have been getting worse over the last few years - I have seen consultants for various tests relating to those individual symptoms, all of which have been negative. I leave each and every time hearing that there’s definitely something going on, but nothing more they can specifically test for. I hadn’t, unfortunately, realised that these symptoms when combined could be an autoimmune condition until my Sister was diagnosed with Dysautonomia and I was reading up on it. Suddenly I was like wait, I have had so many of these issues for years??? Baffled that it wasn’t ever mentioned, but understand that individually it may be hard for one consultant to know.

So, I guess I’m wondering where to begin with it all - is it best to almost self diagnose and be prepared to ask for specific tests that may discount or pick up which condition (if any) I may have, or have you just reached out to a GP with all the symptoms you have and hope they know where to send you? I also *strongly* suspect I have Autism, but trying to get diagnosed in the UK is a whole other battle, and I feel very anxious about starting this journey and having to constantly explain how I feel to various consultants/not being listened to, so hoping it may help me to hear other people’s experiences first to know how best to navigate?

Thanks in advance!

I see a lot of people with autonomic conditions talking about fatigue and it usually reads as sleepiness. People eating meals and then needing to lie down because they feel like they're going to fall asleep.

my experience of fatigue is nothing like that. it's more like being overtired and wired. My chest and head are the only places I feel it and I also get a deep ache in chest and head.

why is mine so intense and painful? I did used to have sleepiness BEFORE getting diagnosed with POTS in 2020 when the fatigue got really bad. I remember eating meals and taking naps. What's going on? Why do I feel painfully exhausted ( ._.) I'm trying fludro the past month and it hasn't helped so I'm not sure it's blood volume related. I'd like to try Midodrine because I heard it improves vascular tone and helps push the blood upward, but I don't have low BP so they wouldn't gimme.

I thought the adrenaline dumps and insomnia was gone

Thanks to taking metoprolol and taking magnesium glycinate at night. Yesterday started feeling the weird anxious feeling again and today it was worse. Feeling cold and then hot and then cold and I cannot get comfortable. Kept having to urinate more than usual despite not drinking any more. Usually can go to sleep with no issues but tonight my heart is feeling higher than normal. Feels like it’s going to be a night of no sleep. It’s very frustrating because nothing has changed and no clue why I am feeling bad again 😞 I can type this in bed and heart is at 66 but had eyes closed and almost asleep and heart went up to 99. I’m at a loss as to what I can do now. Thought metoprolol was helping and also magnesium glycinate.

I (18f) have been struggling with IST for the past four years, ever since a COVID infection I had when I was 14. every year it's just been getting worse, I've been getting more exhausted, I even started falling asleep in my classes. I'm on Atenolol, and it's helped get me down from 175 when "exercising" (literally just climbing stairs and walking up hills) to 150. I'm still so exhausted though, and really struggling to stay awake at school, and at home. it's a pretty regular occurrence for a friend to have to wake me up at school. does it get better with age at all? I hate living like this, and I genuinely don't know if I can get through college living like this. I'm trying to lose weight right now because I gained a lot last year after starting the Atenolol (went from 160-215, and I'm 5"7'). Will the weight loss actually help? will working my legs help? I know theoretically it should help, but long covid is still really under researched due to covid still being so recent, so I'm hoping to find anecdotal advice.

I have IST and more than likely POTS as well (still testing on that one). I'm having trouble finding good electrolyte options for me, so I've just been downing electrolyte waters and gatorades. I hated LiquidIV and I think LMNT is nasty. I actually love salt but hate sweet fruity flavors. Just tried the lemonade sparkling LMNT and I think I rather drink ocean water. I would love more recommendations to others, there is just so many out there that it's hard to weed them out. Between my plain electrolyte water, gatorade, and heavily salted pretzels, I'm not sure what to go for.

I also can't be on be on a lot of beta-blockers because I'm either allergic or they just don't work on me. So, I'm rolling unmedicated at the moments. I'll take all the help I can get with the weather getting warmer where I live. Anything above 75F means death for me lol

This is just a venting post but if anyone has advice or experiences to share, I’d love to hear.

I was referred to a POTS clinic in November last year, the one in Cornwall U.K. had closed so I will need to travel a fair distance to another county. My GP told me that the wait was around a year.

I had a couple of questions for the clinic and the cardiologist emailed me back himself directly to say that the wait is more like 2yrs, so I could be looking at 2028. They are clearly overwhelmed as the clinic he runs is covering multiple counties, but I was very grateful for his candid and polite response.

At 44 I feel like being much older leaves less time to find answers and the older you get especially as a woman, the less interested doctors are in assisting your ailments. Over the past 10yrs I have experienced first hand the misogyny that sadly exists within the medical industry.

For context, I am diagnosed with MCAS/HIT, CFS, Long-Covid, hypermobility and ADHD combined, but also have suspected SFN.

I did consider taking out some form of credit and going private for POTS/Dys. I wonder if there are any places anyone could recommend, especially in the West Country area would be helpful. I don’t know if I can wait 2yrs, but of course private is incredibly expensive.

Any advice welcome or if anyone just wants to share their own experiences please do. Thanks all. 🩷

It’s literally 15 degrees Celsius in my room, I’ll be freezing but the moment I lie down I just get so hot and start sweating and am constantly taking my blanket on and off, I’ve gone like 5 nights now with heavily inconsistent sleep (waking up 10+ times in the night) just so hot it’s awful, there’s nothing I can do because my rooms cold, and then as soon as I get up from lying down I’m cold again… what’s the solution, to never sleep again?

No point going to the doctor because they’re all useless

Just as the title says. My PCP is shutting down her clinic (honestly, good riddance, because she is absolutely terrible!) and I need to find a doctor that will believe me, not stand in my way when it comes to seeing specialists, and be willing to help me get on disability. It might be nice if they keep accurate notes about my symptoms as all of the above as well.

Please everyone, I'm desperate! I can't keep going like this without help, I'm about to be homeless. 😔

do many here have diabetes type 2 that is the cause of your dysautonomia? I have pretty severe OH not POTS and it is so life limiting. I believe the trigger was going on a pretty extreme diet leading to muscle loss and dehydration.

Snow is melting we’re getting warmer weather and I’m stuffy. I get allergies from trees and grass and weeds. Sometimes it’s wet leaves and grass. My symptoms are bad I can never tell if I’m actually sick or have an allergy attack.

Anyone else having a hard time with allergy season? I wasn’t this bad last year my symptoms became worse and constant in January. I’ll be getting some allergy meds and eye drops to help.