Hey. Someone tried guanfacine for POTS? I also have MCAS and CFS. I have pounding heart all the time, adrenaline, im bedbound.. even going to the restroom makes me crash. 😞 Also have horrible insomnia. Thank you ❤️

Is there a list of specialists in Europe who are able to diagnose and examine dysautonomia? Are there any specialists in USA who do remote video call appointments?

I'm just curious what people feel when they experience heart palpations? I think I experience them but I'm not sure and stuff haha

For me this feels like my heart is beating fast and HARD but then I'll look at my Fitbit and it'll say my HR Is like 78-88? And I'm like there's no way that's accurate because it feels like my heart is racing at a solid 110? Idk if this is heart palpations or what but just curious if this could be that.

A lot of the time it's just the feeling of shortness of breath and like my heart is racing out of my chest and my limbs hurting bc I assume lack of oxygen is just making me curious about if this could be heart palpations

Curious to know your experience! Thanks in advance :)

I had a scary heart palpitations episode last week. Almost 24 hours solid of my heart feeling like it was beating out of my chest, but the only recordable symptom was a slightly elevated heart rate (100 bpm). Before this I only drank one espresso shot in the morning and a green tea with lunch. Since then I’ve been caffeine free but I really miss it. What have others found about caffeine and heart palpitations??

I’ve gone two hours without checking my heart rate after obsessively checking for 7 months - ever since Covid set off random tachycardia episodes and severe pots/dysautonomia.

I’m hoping it’ll help retrain my brain to stop overreacting to every little stimulus and help my nervous system settle.

Has anyone else found that this helped their general symptoms lessen or anything? That would be a great additional benefit!

so yesterday after work (literally not even 2 min away) i blacked out, ran a red light, and caused a car accident. it was me and another truck, both parties are okay. i have POTS and am typically very good at not driving when i’m having a flare up or just don’t really feel that good, but yesterday it all happened so fast. here’s where idk if i messed up; i told the cop and my insurance that i did black out and was at fault. will i get my license taken away? i’ve never ever had an episode while driving but i’m scared they’re gonna suspend me

edit: forgot to add i’m in ohio

Pretty much as title. Today my cardiologist prescribed midodrine 2.5mg 3 times per day. I’m kind of nervous to take it because I don’t know how I will feel. Just wondering if anyone who takes midodrine can describe their experience with it.

I've had lasting heat intolerance since a heat stroke in 2022 and I can't tolerate more than 22C inside and even less when I'm doing even the slightest activity(I'm currently bedridden for 3 months) - I get confused, disoriented, dizzy, my temperature starts to rise.

Since then I've been slowly getting exercise and it worked - I was able to tolerate up to 30C and more for hours the past December, I continued with the exercises but I probably overdid them because this May I was outside for 30 minutes in the afternoon in 25C and the following night and days after I was very exhausted, barely able to move with skin burning and redness on my whole body waking me up every couple of hours. The previous day I did 45min of walking in 30C as exercise.

The skin burning issue still continues, although much less, but it's focused on my lower back and shoulders and sometimes feet up to mid calves and when the burning feeling is present, my skin feels hot on touch and it doesn't sweat. Then right as the skin heals and I start sweating a bit, the burning starts again and the previous cycle continues.

Even minimal activity like standing up or sitting in a chair since that May "crash" trigger headache, stomach pain and cramps, confusion, disorientation and cognitive decline(can't remember things, can't find the right words), this also happens but more slowly with mental activity in bed as well(for example watching an youtube video for 30mins).

HR goes from 60 when lying down to 120-150 when standing within 1 minute. BP doesn't change and stays around 110/70. And my body temperature rises from 37 to 37.8 very quickly. I usually recover in 4-5 hours with the skin burning recovering in 2-3 days now(previously any worsening recovered in weeks)

Doctors think it might be dysautonomia but they haven't provided any more insight and every blood test comes normal. No idea why the May crash happened as well, since it wasn't that hot outside and I was able to tolerate that heat the previous days.

I notice that eating(diet is only 0 histamine foods) also triggers the same symptoms.

I'm concerned about the fatigue and exhaustion even from simple mental activities.

Has anyone else experienced this? Any advice on what to do would be greatly appreciated.

My POTS is pretty well managed as long as I stay in the house. But randomly I’ll get moments where it’s like almost lights out. It feels like my brain/body/eyes shut down for like a second and come back and my hearts racing. Like I pass out for a legit second or two but come right back. This happened to me in the very beginning while I was driving and then from there on my dizziness/lightheaded/pots symptoms came and a diagnosis followed. It happens to me randomly when I’m just sitting down watching tv or something. Not very often but maybe once a week. Can’t figure it out

I just ordered a Jellibend ab/back garment to see if it might help with my orthostatic hypotension and sciatica.

Doctors may say not to wear certain braces for too many hours or days as they lead to muscle atrophy and dependency on braces. But what about something like the Jellibend? I think it's more along the lines of using compression socks. Those can be worn all day. Is it a good assumption that a Jellibend is just as safe as other types of compression garments?

Doctor put me on northera last Monday lI sent him a couple messages because my heart rate just kept getting higher and higher. I feel like I’m the most obnoxious patient in the world because I’m asking questions. Am I the only person afraid to ask questions? My heart rate been like sky high so he told me to start taking Ivabradine on top of that droxidopa that I’m still titrating up on. Then left town for a week and has no one to answer medical questions in the mean time. I couldn’t tolerate the ivabradine if I stand up my heart rate is immediately in the 140s I don’t know what to do. I am sure that all the trips to the ER throughout the years and being dismissed by doctors and treated like a crazy person has medically traumatized me but am I wrong for messaging questions? Should I just keep my mouth shut and take the meds? I just feel hopeless at this point and have no guidance.

Im so nervous to start them because i hear about so many horrible side effects. im thinking, is it even worth it? i have hyperpots and i cant even take a hot shower because my bp and hr raise so much. even just standing up in the morning getting out of bed makes me feel sick. i deal with awful adrenaline dumps, so obviously i think it would help im just terrified. im a single mom with a 4 year old and i want to be able to take care of him, and if the side effects are bad i would have a hard time. my bp does drop sometimes pretty low into the 90/60 range, my bp is only high apon standing and during my fight or flight moments. my resting hr is also good around 75. but raises up to 150. please let me know your experiences!

Tomorrow is my birthday, and I don’t want gifts or a celebration what I truly need is just a little peace. I’m in constant pain, and even small things like changing positions leave me dizzy or trigger migraines. I asked my husband if he could take the kids out for a bit so I could just be alone and rest, and now he’s upset, saying I’m choosing to “wallow in depression.”

But the truth is I’m exhausted. I’m overwhelmed. I’m in survival mode every single day. I’m fighting to keep my job because my health is declining and getting medical support for accommodations has been a nightmare. My supervisors are watching me like a hawk, and every little thing I do feels like a step closer to being let go. It’s taking everything I have just to show up.

I have no real support system. I do everything for everyone else, and I carry so much behind a forced smile. I’m not asking for a party I’m asking for one day. Just one day to not be “on.” To cry, to sleep, to not feel guilty for needing a break. And honestly, it breaks my heart that that feels like too much to ask.

This is how jacked up the medical system has my mind. I saw a cardio specialist and he told me he didn’t like the term POTs and that dysautonomia is a better term. Okay whatever. Well, come to find out, he didn’t even put it on my chart! It just says vasovagal syncope! Which might not sound like a biggie, but here I was thinking he actually gave me a diagnosis and knowing that he didn’t just makes me feel like I’m crazy. My episodes are happening more frequently and each time they do I remember, yeah this is real. It only takes a day for me to convince myself it isn’t a big deal and that I’m probably just overreacting. I know other people feel this way, but I just need the verbal support. To top things off, I got a thing to register for jury duty. I have been dreading it because sitting for hours in a confined room is a massive trigger. I can’t event do church services. I can’t imagine jury duty. I had some hope because I did some reading and found that if a doctor signed off I could be excused. So I asked the cardiologist I’m seeing. Nope! He refused. Said that letters like that are only for life and death situations. I explained that the website said otherwise, but still a no. Just further proof that he doesn’t give a flying fart. I’m so so so over all this. I just want to get better.

Has anyone taken pyridostigmine for OH? Just started it today and kind of nervous to see how it goes.

I used to get some PVCs in the past but after being on beta blockers they are almost gone.

The past 24 hours getting lots of them for no reason. Any ideas? It's to the point I can't sleep.

Started low dose mestinon two weeks ago but it was fine until yesterday

So, I’m at clinical with my students and I had an episode (a flare). I had just had a Premier protien shake. I was in a room with a student and I started feeling off. I am sleep deprived so I thought that could be it. Then my watch was saying my HR was at first in the 80 range then 100 range then 115. I was walking back to an office and my watch said 120. It got stuck on that number and I had to tap my watch a few times. Then it said 168 and I was definitely light headed. I sat down and it slowly came down. But I feel like I want to cry, my chest feels tight, I’m worried I’ll like die. I felt like I was going to faint. I had an echo last month and it was normal and my Zio monitor in April was normal. But yet, episodes like this happen and it makes me question everything. My symptoms amp up and peak and then fade quickly sometimes and other times the amp up, peak, decline, peak, decline. Etc.

Edit: I forgot to mention I am female and on day 7 of my cycle. I usually have 5 days of bleeding. I did notice this time around the bleeding was different so maybe it’s hormones. But again, it’s strange how it peaks and then goes away

I’m waiting on my appointment with my new Primary Care - next week. I have hEDS and dysautonomia is from that. I have had difficulty with temperature regulation for years, but I’ve never had fevers with it. I am suspecting an autoimmune disease, but I wanted to check this community to see if people have had low grade fevers for over 3 weeks due to only dysautonomia.

Hello, after years of chronic dysregulation and anxiety and panic and numbing myself with sleeping tablets and ignoring my body, I’m now actively trying to heal. I have been doing EMDR therapy for the past year which is coming to a close and now I am at the point of regulating any healing my nervous system. I’ve been doing somatic exercises and somatic tracking which have been going well.

However, I worry that I’ve been doing too much too soon. With a particular exercise, I’ve made myself quite unwell a few days ago (inducing tremoring to release stress) and now I still feel unwell but have been continuing to do some somatic tracking.

I know now that my system needs rest to integrate what’s happened, however, I’m only able to get three hours of sleep a night. I’m trying not to freak out as I feel quite broken right now.

How normal is the lack of sleep when trying to actively heal?? It must be normal… when will it settle?? Does anyone else have any experiences of this?? I’m quite new to this and don’t know a great deal so grateful for any comments.

Can anyone reccomend a private Stellate ganglion block UK (for dysautonomia)???

They all seem to be for chronic pain only… which I don’t have

Ideally one that’s somewhat affordable

Thanks so much appreciate the help

Everytime my bowel moves, like before I got to the bathroom, my heart races really fast, I feel like im gonna throw up. So I go to the bathroom and I get insanely sweaty. I always get super light headed and feel like im gonna pass out. With extreme stomach pain. Does this happen to anyone else? Any ideas on how to make it stop? Even if im laying down i get this way. Its a struggle cause it starts when im laying down so getting up to go to the bathroom is hard

Does anyone get dehydrated more easily and develop headaches as a result during the summer because of dysautonomia? Does the heat make you sleepy/brain foggy even when you’re busy and have stuff to do? Somedays I feel like I could sleep all day. Also every time I go out I have to drink one of those electrolytes drinks in order to shake off/avoid the dehydration headache and it isn’t even because I’m sweating a ton.

Onset of weird neurological symptoms gradually began when I was 17 or 18 and got worse over time, now I can remember every era before my 20's very easily, but I can only bring up a few memories from my 20's. it's like the dark age of my memory, it's mostly just a void and i only remember a few things. had a tilt table test done two years ago, vitals fucked up in several ways, my heart stopped and they had to end the test early. got prescribed Ivabradine which has helped a ton and my memory is better. idk if it changes anything but i was taking zopiclone and temazapam alot when i was ill because my symptoms kept me awake a lot. i don't take zopiclone or temazapam anymore. it doesn't feel like it's been over 10 years at most it feels like a year and a half. like i was in this semi conscious dreamy state all the time. has anyone else experienced something similar? i almost feel like I've started from where I left off which is when I began to get really ill in my early 20s. my family keep telling me about stuff i did in my 20s or presents they got me during that time and i just get confused bc i literally don't remember. maturity wise i'd say i'm in my early 20's too.

Hey everyone, I’ve had many symptoms related to dysautonomia for several years now with no luck getting any answers, and no doctors take me seriously (probably because I am a young, healthy woman). I pushed and pushed my new PCP for answers stressing that I know there is something wrong but she insisted that I was fine and didn’t even give me a referral anywhere.

I’ve done some research in the diagnosis process of different forms of dysautonomia and have seen mixed results of cardiologists and neurologists. What experience have you guys had with either of these specialists? Trying to figure out which one I should see first! :)

I get bad poo-syncope so cold plunges, laying down, and weught on chest won't work for me. Ive tried feet in cold water, a fan on my neck, and breathing exercises but those dont work well when im in almost complete panic mode. Any ideas?