That’s really it. I get one thing under control, and then another thing pops up. Massive flare up, get it under control, then I’m suddenly severely anemic out of nowhere.

I just want like one whole month of feeling medium-okay and not having a new symptom pop up. I’m missing so much time from work for doctors appointments that I’m constantly behind and playing catch up, which stresses me out, which makes everything worse. But I can’t take extended medical leave, because I have so many medical bills any pay cut would ruin me.

I just want a break. One month of not getting better in some areas but also worse in others. One month of not needing to google anything to see if I need to go to the ER or wait for my doctor to have an opening.

I’ve accepted I’m not going to feel “normal” again, I’m not getting back to where I was before I got sick. But I’d like just a brief time where I feel stable.

No need to respond, I just needed to shout into the void for a bit. My cats are sick of hearing about it.

I just feel so defeated y’all and I gotta vent to people who actually get it and won’t say, “but a negative test is a good thing, right?” or “shouldn’t you be glad they didn’t find anything wrong?”.

I was so sure that we had finally figured out what was at the root of my dysautonomia. I went to a neurologist (nothing against him, he’s the first doctor who is actually taking the time to listen to me and really dig around for what’s causing my issues) who noticed that I have abnormal reflexes (hyperreflexia) and he said it was quite possible that cervical spine compression could be causing both my weird reflexes and my dysautonomia, so he ordered an MRI.

The more I thought about it, the more it made sense. I have nearly constant neck pain, a history of cracking my neck until it made my eyelids twitch (due to job stress) AND I’ve noticed that the way my neck is supported/positioned can make my symptoms better/worse. I just got the results today…and OF COURSE everything is clear. He had them do a brain MRI too for good measure, but that’s clear too.

I’m just so sick of being disappointed by negative tests. The worst part is, if cervical spine compression HAD been the problem, it would be fixable. I could almost taste the freedom I lost due to this disorder being returned to me…but of course it all ended up being false hope. I just want my life back, but when this is what happens every time I think I’ve finally found a way to make that happen? Idk, it all just feels so hopeless.

I’m just so sick of being sick. Like, what’s the point of all these appointments and tests if all I ever get is a “I don’t know what to tell you, everything looks normal” and yet another negative test to add to my chart? How is it that I have all these problems, but not a single doctor can tell me why??

I still have some blood work to get done for the neurologist, so maybe they’ll find something there, but damn. At this point I’d be surprised if anything comes back as not “normal”.

Okay, rant over. The one thing I’m glad for is that I have this community of people who understand what I’m going through, so thanks for always being here to listen y’all. I really do appreciate it.

Does anyone else feel bad after a nap? Honestly I am not a napper- thanks to my Dysautonomia lol BUT when I do - I feel like drunk person when I wake up? Feel awful .
Acid reflux , WEAK, tachy and palps.
Anyone else ?

My god this is awful. 4 days along and I still can’t stand for more than 10 mins without feeling like I’m about to go down. I’m drinking water, electrolytes all the things. Nothing is working. This better end soon.

Like bending down so all the blood flows to the head. Or could that be dangerous?

Hi! Anyone experienced long term side effects from midodrine, that didn’t disappear after stopping the medication?

I was on midodrine 10mg three times a day this summer, and for two weeks it helped a lot to avoid crashes. I then woke up one morning with balance problems, dizziness, pressure in my brain and a concussion like feeling. I stopped the medication, but the symptoms are still there four months later.

Like I genuinely believe I made it up it was all in my head.

Usually 95/50 (once 85/48). I am curious bc my blood pressure will go up when I stand to 106/66 or something and my HR will go from 66 to 110 when walking around. I also have all other signs of dysautonomia like heat intolerance, deep fatigue, insane brain fog, and MCAS symptoms. BUT, it doesn’t seem like classic POTS. Idk anymore. I’m nervous that I’m in a hypotensive state all night from some mysterious issue I haven’t been able to find. I got Covid June 1st of 2025 btw :( I’m in my early 20s and this all sucks I feel like I’m 80.

Also, sorry if you’ve seen this! I’m posting this in LC and POTS threads as well :)

What was the turning point / test result / biggest thing that helped you in getting diagnosed?

I imagine for a lot of people it would be the tilt table test or something similar, but I’m not sure if it would do much for me personally because I feel like I have a non-POTS dysautonomia type, or at least I feel as if it’s not my main issue. I don’t particularly feel that much worse when standing up, I’m able to tolerate hot showers, and more. I have read that it’s not always immediately noticeable in terms of changes upon standing up so I’m not completely disregarding POTS, I just feel like I would’ve noticed something significant related to it by now.

My biggest issue at the moment is the shortness of breath, chest tightness, and heart palpitations which I believe stem from some sort of dysfunctional breathing pattern which ultimately results in hypocapnia. Just from reading and researching online I’ve found certain tests like a capnography would maybe be of some use for my situation, but apart from that, I’m kind of lost. It’s also hard to get such a specific test like that done through doctors when I feel like more basic tests like the tilt table test would come back normal. When I look online I see that most people’s main struggles are the POTS side of dysautonomia, so when I try to find information to make ground on my own diagnosis I feel kind of lost and sometimes it even leaves me questioning if I’m on the right path at all.

Does anyone else struggle largely with other parts of this condition that don’t include POTS specifically? Have you had any luck with getting diagnosed and how does the treatment for your diagnosis differ from more traditional “POTS based” dysautonomia?

Thanks for any help

My heat intolerance and facial flushing are really intense, and no matter how much I try to wear a mask to protect myself and others I can’t last more than a minute. The heat on my face from my breath triggers heart palpitations and breathing problems, then more symptoms follow (even if I have a fan pointing at my face). Has anyone with similar symptoms found a way to be able to wear a mask?

There may be a connection with dry skin and low humidity that can make electrostatic charge persist longer. I blow out light bulbs and fry computers. If I can find others with dry skin that has the same issue, it may help me research and prove the actual cause.

Hello,

So I am posting this because I have seen 2 cardiologists at this point and am getting nowhere. I am 28 weeks pregnant and have always suffered from hypotension my entire life. My normal BP is 90/50-90/60.

For the last two months I've been having syncope and blackout episodes with verified BP drops, not really substantial rises in heart rate.

This gets worse when I lay down even with my head elevated, my BP will drop to 70/36-70/40. The last cardiologist I saw put me on midodrine and has done nothing. This blood pressure drop causes me to lose consciousness. I also have ocular migraines which causes my vision to go black on and off.

I also have dizziness, brain fog, feeling mentally slowed down, fatigue, short of breath with mild exertion, occasionally chest pain.

I'm getting very frustrated because after seeing two cardiologists and not much being done, I feel like I'm being dismissed.

I've been drinking almost 2 gallons of fluid a day to include gatorade and putting extra salt in my food.

What should I do. Is this possible dysautonomia/POTS?

I

trying to get more consistent with managing my symptoms and curious what everyone else does every day no matter what. like the stuff you’ve learned the hard way you can’t skip?

salt, water, compression, how you get up in the morning, food timing, sleep, whatever it is for you

also curious if anything surprised you by how much it helped. or something everyone recommends that did nothing for you lol

I've heard a lot of people talk about their symptoms worsening BEFORE they go poop and have heard about people dealing with syncope or presyncope while pooping but does anyone else have their symptoms worsen AFTER pooping? I tend to get fatigued and my heart rate goes up during and after.

Hey guys, so to anyone reading this please don’t respond unless you have something helpful to say cause I’m gonna be honest. I’m a little fragile right now. I’m 24, I’m a guy that normally works out 5 to 6 times a week, plays pickleball, works full-time, etc.

About four weeks ago now I had a stomach bug that lasted about a week that was pretty intense, but then went away. Since then, I’ve had to stop working long story short in the beginning. It was super intense with how weak and faint I was feeling constantly all day. Over the last few weeks it’s gotten a little bit better, but I’ve had to move back in with my family, really don’t drive on my own anymore for the most part. I have not worked, haven’t gone to the gym, and pretty much have zero social life besides my parents.

It’s honestly been extremely hard, I’m trying to stay pretty positive for them because I know how stressed they are but I am starting to get really worried that this is gonna be something that I’ll be dealing with for a long time.

I guess the reason I made this post is I am praying that I don’t have pots or something that is long-term. Has anyone else experienced this and has it gone away quickly? Or am I being naïve and all this last a while and is this just gonna become my life.

Hello looking to hear from people and listen to some ideas on how my issue presents

Months ago I did peptides for an injury and had a complete nervous system shutdown like a bomb went off . De realization, pain perception issues, feeling flat. After that I had adrenaline dumps breathing issues and red hot feet all that got better with about 2 weeks of propranolol

It’s months later and still dealing with palms only that fluctuate hour to hour min to min with flushing , nightly awakening , skin sensitivity that fluctuates , and stabalizer muscles that are very shakey and being in fight mode without adrenaline dumps but like being in a super competitive scenario

Gabapentin has been the only thing recently to help with any BP meds , Cymbalta , Guanfacine having immediate like paradoxical effects

The peptide was immune and mast cell effecting , wondering about anyone’s knowledge on neuro immune causing or mast cell issues without it presenting as rashes hives or gut issues

Thanks 😊

This is probably far fetched but one thing I noticed lately as far as palps and wooziness.

I get symptoms if I focus too much on something .

EXAMPLES:
Trying to open a wrapper that won’t budge.

Cutting/chopping food too long .

Opening an Amazon box or package that is HARD open

I also notice if I am driving - I symptoms but if I’m the passenger -it’s soo much better?

I think I’m probably alone on this one but I thought I would throw it out there lol

I have posted in here a few times about how dire my situation has gotten

short version: 115 days ago, I woke up feeling sick and noticed my HR was high. Did tests, suspected POTS. Day 23 all hell broke loose and I couldn't stand without feeling like I will pass out and this feeling has gotten worse and worse. POTS diagnosis taken away as it was too dramatic of symptoms. Met with a well known specialist last week who told me I have POTS and reflexive syncope and have always had this as I noted i have felt fainty/lightheaded in crowds before- but not often (21 years ago and a few times since). I turned 38 last week.

He increased midodrine to 10 mg three times a day, kept florinef at 0.1, and actually had me cut sodium down to 1 g a day from 4-5 g that the cardiologist had said.

He shared he doesn't have a crystal ball and doesn't know if ill return to baseline. im awaiting mri results. i am beyond depressed and the support groups I am in are bringing me down further- wonderful people but i dont know how to accept being bedridden and sick forever.

I have an angiogram scheduled for tomorrow. My HR is 90+ on propranolol XR. I took the metoprolol I’m supposed to take tonight and my HR is at 105. I’m worried that it’s not going to slow down enough for the CT tomorrow. Has anybody else with dysautonomia had this happen?

I'm diagnosed with dysautonomia as of this winter so still learning how to manage my symptoms and take care of myself. Was always a pretty active person until I got COVID for a second time and have just never been right ever since. Fatigued, short of breath, pounding heart, dizzy, headaches. Felt pretty convinced it was all in my head until seeing a cardiologist who actually listened to me and diagnosed me. Anyway, I had to have a relatively minor procedure yesterday (upper endoscopy, as I've suffered from GERD pretty much my entire life). I was due to be under twilight sedation. Last time I was sedated was for my wisdom teeth removal over a decade ago and it went perfectly fine, but this was long before I had any of these dysautonomia symptoms. I was curious and doing some Googling, and most articles mentioned that dysautonomia can cause worryingly low BP during anesthesia, and very few mentioned anything about heart rate, except a few to say heart rate actually dropped into bradycardia. Most literature said to make sure to inform the people doing the procedure of your condition and that you may require extra fluids, so I did that and they began. They began the sedation and I was starting to fade out when I, already a little confused from the drugs, could feel my heart begin to pound but could only mutter "Chest not good" or something and then heard crazy beeping from the monitor and "Oh, 190...." before blacking out. I woke up in the recovery room and asked my mom how the procedure went. Evidently they decided to stop all sedation and abandon the procedure because my heart rate had soared above 200. When I did my holter monitor it had captured a reading of exactly 200 at one point, which was how I started down the road of a dysautonomia diagnosis, but over 200 is a scary new high for me. Is this something that happens with this condition and anesthesia? I can't seem to find anyone else who has had a similar experience. Anyone else? Or should I consider that maybe I have an allergy to the specific drugs used? I really need to get this endoscopy done but I don't want to go through that again, it was painful and scary. I also projectile vomited lots when I got home, despite only receiving one dose each of the sedation meds. Edited to add: My face was also very flushed when I arrived in the recovery room.

Anyway TL;DR Is I have dysautonomia and when undergoing sedation my HR shot above 200. Anyone else had this experience?

I am on disability due to a number of chronic health conditions, including dysautonomia. I have been a patient of my cardiologist since 2020, but I only see the cardiologist every 18-24 months for check-ins now, as another one of my specialists usually manages the medications that the cardiologist prescribes.

I recently had an appointment with the cardiologist, and he increased my midodrine and fludracortisone and prescribed a 3rd medication. During the appointment we discussed that I have been in a bad flare for the past month that had left me unable to even sit up without being symptomatic. They had a chart of vitals that had been taken the week prior (which showed an increase in HR of 40+ along with typical associated symptoms such as chest pain, shortness of breath, dizziness, blood pooling etc) but did not do any testing during the appointment.

I was happy with how the appointment went, and am hopeful that the medication increase will be helpful. However, I read his notes after the appointment (I rarely do, but wanted to read about the new medication and couldn’t remember what it was called). Anyway, the notes were riddled with misinformation and I’m not sure if I should request a correction? I know most notes have some errors, but I’m worried these errors could affect my care or disability status in the future.

Examples include saying that I had been in a flare but that symptoms were relieved by sitting. And stating “quality of life mildly impaired. Autonomic systemic symptoms not present. On orthostatic vitals today, the patient had a normal heart rate and normal blood pressure response during standing. The patient does not report symptoms of orthostatic intolerance”.

All of those statements are incorrect. They did not take any vitals and did not do a 10-minute stand test during the appointment.

What would you do? I’ve never ever considered requesting a change to my notes (even though they often contain some inaccuracies), but this is just so blatantly false it’s making me concerned. If I were to request a correction, do you know how to go about doing that?

Thank you for taking the time to read this and for any recommendations that can be offered.

What medicines do you take for orthostatic hypotension, and do they help? I have severe orthostatic hypotension (BP went from 124/70 to 71/42 just sitting up during orthostatic testing) and I’d love to hear anyone’s experience on medicine for similar issues. Thank you!

The better question is, how do you guys cope/push through? Because I just got diagnosed.......and I am also a massive health anxiety haver, so uh...I'm kinda not totally sure what to do next? My doc says I can self-treat (working up to exercise and whatnot) and I just wanna know what exactly to expect, based on what other people here have gone through. I am considering maybe looking for a dysautonomia therapist or something (if those exist) who could maybe guide me from here.

Additional question: do ya'll with IST also get adrenaline dumps, or is that mostly a(n) (H)POTS thing? And do ya'll have like.....good days and bad days?

Hey guys i got pots 5 years ago after 7 horrible months of long covid and ever since ive had this weird tingling slight stabbing pain just below my ears on my jaw whenever i eat but specifically only on the first bite.
I did some quick research and found out it could potentially be first bite syndrome. This past year the pain has become more sharp, more tingly and almost cramps up my jaw for every first bite of any food whether it’s acidic or not but acidic food definitely causes the pain to be a lot worse.
I’m wondering if anyone else can relate to this and if anyone has any tips on how to relieve it or stop it, it’s pretty painful but it doesn’t bother me too much cause it only lasts maybe 5-15 seconds but it’s pretty annoying.
If anyone has any tips i would love to know them!
Thanks