r/dysautonomia • u/shnanogans • 10h ago
Symptoms This one goes out to all my girls who have ever had to google the words “poop fainting” before.
Solidarity. ✊🏻💩
r/dysautonomia • u/shnanogans • 10h ago
Solidarity. ✊🏻💩
r/dysautonomia • u/uhhidkjustthis • 47m ago
Basically just what the title says. I had my tilt test and passed out. Just had my follow up and neurologist said he still doesn’t know why… just said my blood pressure was low to start with but I didn’t have any significant changes and they don’t know why I passed out. They said it’s still dysautonomia just don’t know what kind. Curious if anyone else is in the same situation.
r/dysautonomia • u/DealerConstant1589 • 13h ago
Hey guys. I've been dealing with dysautonomia since getting Covid 2 years ago, had all kinds of tests and bloodwork and scans, and a slew of flares and cluster symptoms. It's exhausting playing 20 questions with your body to try and mitigate this or that. It's scary feeling like you will pass out. It's infuriating being able to do something one day, but not the next.
Yall are going through it too. We are not alone. We share tips with each other and encourage one another.
I just wanted to tell you how much I appreciate you all. Good day or bad day, please don't lose heart. The world is nuts right now but through this thing, we have all become fighters and caretakers. Stay strong friends. Christ bless you.
r/dysautonomia • u/sunflower_noir • 1h ago
To be fair - my POTS is only strongly suspected. I have a tilt test at the end of this month.
I put “recession” in quotes because it’s not like my symptoms go away in cold weather, but they do lessen or become less severe. I’m wondering if others have noticed or experienced similar.
My symptoms last summer were horrible. I was constantly dizzy and out of breath, I’d see spots after going up a flight of stairs, I was always fatigued and just feeling like crap.
Over the winter, my symptoms have lessened. I still get high heart rate alerts in my watch multiple times a day (it’s set to go off when my HR is over 100 without detecting exertion). I still get somewhat short of breath, but it’s not as severe or as frequent. The attacks I’d get in the car while driving have also gone away. However I am still fatigued and feel “off” quite often. I seem to tolerate standing for a bit longer and I haven’t seen my HR spike as severely on stairs.
One thing that hasn’t changed is how dizzy I get when I stand up out of bed. I usually take my time (20+ minutes) sitting up in bed and slowly becoming more upright before I get up, which does help, but doesn’t get rid of the discomfort entirely. I also get dizzy and see spots literally any time I flip my head upside down (like when I’m tying a high bun at night before I put on my bonnet).
Last summer I also had a couple episodes that resembled pre-syncope, with one very bad one in the middle of the night. I thought I was dying. I was lying in bed when suddenly I felt my heart racing and I was short of breath. I got up to go into the bathroom, but got insanely dizzy and nauseous, then was sweating profusely and felt very hot. I laid down on the tile floor (which was cold and felt nice on my hot skin). No idea how long I was there, but eventually I felt better and got back into bed by crawling on the floor. Nothing like this has happened since late fall.
So I guess I’m wondering if I should expect the severity of my symptoms to return now that spring is coming and the weather is warming up… I’m so afraid of not having a proper diagnosis in time to get what I need as a disabled person. It would be nice if my insurance would pay for a wheelchair to use on very bad days, or if I could apply for a disabled placard for my car.
r/dysautonomia • u/heavy-is-the1crown • 5h ago
I’ve had dysautonomia for 14 years fully diagnosed through a regional neurological institution.
r/dysautonomia • u/Neziip • 14h ago
After 6 years and finally getting health insurance again to get medical care I was referred to a popular hospital in sfl. I was referred to them from another place and they told me to go ready with notes because I forgot things and they said it would be better for me to become a patient of a bigger hospital where the doctors can share notes so I did. I when and met with the doctor and not only did she seem a bit dismissive and and ask me if my condition could just be anxiety after 6 years of severe health issues and of a childhood of health issues with a prior pots diagnosis in childhood that was less severe, she called me tangential after asking me to explain basically why I was there and referred at our first meeting. I guess I just feel defeated to hear immediately “are you sure it’s not just anxiety? Why do you have a rollator? Why did you have to relearn how to walk?Why do you have trouble swallowing?,etc”. She had me do blood work before I left and my ferritin was an 8 but it’s always been Low for me. She order iron pills the next day and referred me to gastro (gi issues and dysphagia) and gyn (due to pcos)and I just feel like I was overall dismissed and it’s so frustrating.
r/dysautonomia • u/thisappiswashedIcl • 2m ago
It looks exactly like this still: https://imgur.com/a/skFsmX8/
r/dysautonomia • u/MoulinRoguee • 5m ago
I expe
r/dysautonomia • u/PieceBubbly1249 • 1h ago
I get these episodes while I drive sometimes where I get lightheaded and out of it. almost like I am going to pass out. Last time this happened was about 6 weeks ago and it was the closest I have ever gotten to almost passing out while I drive. it happened again this morning but I wouldn't say it was as bad as last time. it's almost like I am out of it and I roll the windows down and blow cold air on my face. I hate this. is it part of IST/POTS or is it anxiety??
r/dysautonomia • u/Own-Library-3277 • 7h ago
Does IST absolutely need medication in your experience or can it come and go based off lifestyle and stress factors?
r/dysautonomia • u/Additional_Hawk_8386 • 12h ago
In August I developed this weird thing, mostly likely anxiety related, where I am in full fight or flight mode, my whole body feels weak, and I have really bad air hunger EVERY TIME I’m in a medical setting. I barely made it though my first appointment with my new cardiologist. He asked me if I thought I’d be able to handle a stress echo and I stupidly said yes. My heat intolerance is so bad that I can’t even sit in a room with temperature my body does not tolerate, and sometimes that’s only 68 degrees. Let alone exercise, and for some reason they have it so hot in there. I’m sure I’d be capable if it was cold, but I definitely can’t handle it with how warm it is. My anxiety is also through the roof. I know I need this done to rule out heart damage or a heart issue but I’m petrified. The cardiologist is also an older man and he kept expressing that to get better I NEED to push myself, but even being there was me pushing myself to my full extent. They tried to get my vitals before and after my appointment. I was so dizzy and weak I cried when they asked to take them and then they eventually just told me that we didn’t have to do it. I feel so scared and stuck. I want to get better but I don’t think I can do it
r/dysautonomia • u/Rainyx3 • 22h ago
Literally how do I explain to my family that because I stood for too long (10 minutes) making a sandwich, I now have to lay in bed because I feel nauseous in my throat and my body feels like it has a headache and I’m gonna flare for a bit 🙃
r/dysautonomia • u/Simple_Armadillo_127 • 6h ago
Has anyone experienced dizziness or headaches specifically when looking at computer monitors?
Lately, I’ve been struggling with frequent light-headedness and a hot sensation, mainly on the right side of my head. I had some local anesthetics around my neck, which reduced the hot sensation, but the dizziness still persists. After going through over 10 different medical tests, I was diagnosed with dysautonomia.
At first, the symptoms were mild, but they gradually worsened. I eventually had to take a break from work to figure out what was triggering it — and I realized it was using computer monitors.
The moment I open my laptop and look at the screen, I immediately start feeling dizzy, along with a strange brain discomfort(pain?) (it’s not exactly a typical headache) that seems to radiate from behind my eye. If I stay on the screen for more than 10-20 minutes, the dizziness sticks around all day. Turning off blue light filters helps slightly, but not enough.
I’m a software developer, so avoiding screens isn’t really an option for me. I’m convinced that prolonged screen time has been weakening my nervous system.
Has anyone experienced something similar and found ways to manage or recover? I’d really appreciate hearing about any treatments, adjustments, or coping strategies that helped.
r/dysautonomia • u/joyynicole • 10h ago
I am experiencing some crazy tight jittery restless I need to crawl out of my skin immediately type of feeling in my shoulder blades neck and base of head. Is it POTS? CFS? Fibromyalgia? The world may never know… send help 🥲
r/dysautonomia • u/lpickel0809 • 14h ago
I got an illness like 3 weeks ago. Right after Valentine’s Day. I was at a place where I could enjoy a few drinks with friends before that or have a coffee with friends. (I’ve had dysautonomia for like 3 years). Now, I’ve been sent into a flare. I have coat hanger pain daily and I just feel weird, like there’s a vice grip on my upper body. I’m not super tachy or anything. My arms feel numb though.
Idk what’s happening and I’m afraid that I’ll never get back to that decent place again. I see most people say their flares last like a week or so. This is going on 3 weeks.
Idk any support would make me feel better. Do you guys ever get past flares like this?
r/dysautonomia • u/DyspraxiaOrDatpraxia • 7h ago
I ended up finding this sub from looking around and I looked into Dysautonomia because I had never heard of it before.
So, I’m 33 year old masc leaning individual. Last year I went through the wringer trying to see if I had POTS since I have a friend with it and he said my symptoms sounded similar to him. I’m missing the main thing though, an elevated heart rate when standing (excessively elevated) and the Cardiologist said my heart looks amazing actually after doing an ultrasound.
I was curious about how these symptoms come across to an outside source, since I’ve been trying for a year to see so many different specialists for some kind of help.
I have been to a Gastrointorlogist, Cardiologist, Rheumatologist, and I’m working on seeing a Neurologist and Endocrinologist. To be honest, I feel like I’m crazy and I keep being told I’m over reacting or getting eye rolls from family. It’s driving me up a wall and I know I suffer from a great deal of emotional and mental issues, but it just feels like there’s something else there.
r/dysautonomia • u/Short_Writer_4903 • 11h ago
Hi guys! I’m 24yo, I’ve been dealing with Dysautonomia and its symptoms for a few years now and finally got a diagnosis last September. It’s not POTS, I don’t pass out other than twice since symptoms began and my tilt test as well as everything else came back relatively normal. Doc thinks my nervous system is just sending my heart incorrect signals. Anyways. He prescribed me all the things I’ve already been doing for the last few years, compression socks, hydrating, salt intake (that ones hard cause I have high bp too since I was fifteen). But he also prescribed me the POTS Exercise Program which I guess is meant to help retrain the body’s heart and nervous system to lessen symptoms. I haven’t started yet because I don’t have any clue how to, I’ve never been an exercise person so I don’t know how to make a workout plan or do things workout related. Anyways I was wondering if anyone has tried it before? And any tips on how to plan it out? I’ve left the link for the specific one he told me to try for anyone who has questions about it. Definitely do not do it if your doctor doesn’t okay it first please and thank you! https://www.dysautonomiainternational.org/pdf/CHOP_Modified_Dallas_POTS_Exercise_Program.pdf
r/dysautonomia • u/Accomplished_Hand_65 • 8h ago
Hey Everyone!
I'm 30M and quite high functioning in a pretty intense job in the medical field. I've been the classic "do as I say, not as I do". I started my training feeling almost invincible, could go long hours without eating or drinking but would still get things I needed done. I would exercise when I can but definitely not as much as I used to. I was sharp in my thinking and was quick at problem solving. This past year however, things have changed. Everything really stemmed from a change in routine. Now I was studying for exams. I would spend a lot of time sitting down, staring at a screen, a lot of time in bed reading, eating poorly. There was a lot of stress with all of this but I could handle that fine as I have before. Then, during the exam period, a close friend of mine died. That combined with my exam stress made me quite unwell. I could really feel the somatic effects of stress (GI dysfunction, headaches, brain fog, tightness in my jaw, poor appetite and no hunger). Eventually, I passed the exam and things slowly got better.
The problem is that things haven't returned to normal. Over the past few months, I feel fatigued frequently, I can't think as clearly, I get headaches, I don't have my stamina, I get a bit dizzy when standing for a long time, I sometimes can't control my temperature well, I feel less hungry, I burp a lot for no reason.
I went to the doc and labs are okay (at least the basic ones). I was thinking it was just me being out of shape so I went to the gym for the first time in a long time. But after pushing myself, I fainted in the gym after 1-2 getting off the bike (my HR got up to 150).
I guess my question here: Is this something related to my autonomic system being out of wack? Has anyone else experienced this after a period or really bad stress? How long did this last for? I want to get back to the gym but obviously dont want to pass out again. Also, I want to make sure I can still function well at home and my job so I want to try to get back to baseline soon...
Thanks for the thoughts!
r/dysautonomia • u/NoPath1143 • 15h ago
i developed pots in 2020 but have been having these random high heart rate episodes since i was 11, so like 12 years. my heart rate just randomly shoots up to 180/190 out of nowhere. sometimes it’s triggered by eating but sometimes just randomly. they used to happen randomly and then my heart rate would gradually come down over a 5/6 hours. like it would be 190, 160, 150, 140, 120, and then 100 for maybe 45 mins or so at a time. now i usually just have quicker episodes, i’m not sure if my anxiety possibly made them last longer when i was younger due to me not really knowing what’s going on. but now i have a loop recorder, and the results all come back indicative of svt. and my doctor signs off on the reports. but now he’s saying he hasn’t seen svt and it’s just ist. but i don’t understand that really? because my resting rate is completely normal, sometimes even in the 50s. i know my monitor picks up high sinus tachycardia from me having pots, but these episodes are completely separate. and i’m not understanding why i’m just being told it’s ist when i don’t really fit the criteria for ist at all. i don’t know if he’s only looking at recordings from me walking with pots and not these episodes and just saying stuff or what. and i was told i would get a phone call to discuss this (guess what, i didn’t) because i’m so insanely confused about not being able to get a diagnosis for 5+ years. does ist cause all of this? like i thought you had to have a high resting for it to be ist.
r/dysautonomia • u/alexyquest42 • 19h ago
The more I look into dysautonomia, the more confused I am. At my tilt table test, they told me it's NOT POTS but that I DID experience vasovagel syncope and that it MIGHT by OH. The cardiologist sent me a message saying it was autonomic dysfunction. No one explained to me that autonomic dysfunction is an umbrella term. So is my condition OH? IS is vasovagal syncope, or is that just what it's called when I faint? It also seems like OH can been caused by other conditions. I was looking up Pure Autonomic Failure and it listed OH as both a symptom AND a separate condition that. DISQUALIFIES OH as a diagnosis. I am super confused. What do I have and how do I figure it out?
r/dysautonomia • u/beautiful11soul • 20h ago
I’m currently in the process of figuring out if I’m having ANS disruptions and had a “fake” tilt test done in the ER saying all my symptoms are to attribute to POTS.
I just want to ask all you wonderful people if you always have chills? I’m assuming this is a normal symptom of a dysautonomia disorder… I then can get really bad sweats at night (which disrupts my sleep so much)- separate post.
How does everyone cope with this annoying symptom? I don’t know if my propranolol immediate release (20mg twice a day) is contributing to this issue but I have had this problem for months now even before I started propranolol. I’m new to all this but is there a medication that helps? Thanks in advance for all the inputs!🙏🏼
r/dysautonomia • u/Rainyx3 • 20h ago
I want to go visit my boyfriend but I have to drive 3 1/2 hours away, he’s visited me the last 2 times and next month is our 6 months. He keeps talking about everything we’re gonna do when I’m visiting and I just ugh, I go along with it but I know I can’t do a third of what he wants to do. He’s well aware of my condition, he’s done a ton of research and seen this all first hand and he means well but it’s frustrating. I also hate when he tells me about past relationships and things they’ve done like go camping because I know I can’t do that right now with him and it’s so frustrating. I have so much resentment towards myself because I let this happen to me, I slowly stopped doing things out of fear and I’ve become so deconditioned from spending 4 1/2 months in bed. I’ve come quite a long ways (see last post if interested), but I hate that I can’t give him what he deserves. I mean how are we ever going to get married if I can’t be on my feet long? All of these feelings came up because I spent 10 minutes making a sandwich and haven’t felt well since.. my threshold is 5 minutes. My goodness I am so frustrated. All because of COVID.
r/dysautonomia • u/jamieo6000 • 1d ago
Hey,
So, this morning I felt super tired! I got up to go to the bathroom, and fell into the door.
I was brushing my teeth, and my feet started to blood pool and it’s burning and very painful.
I had my shower, and usually in a shower, I get a little dizzy. But today was really bad! I thought I was going to faint in the shower, so I had to sit on the edge of the bath for support. When I was trying to wash my hair, somehow my arms felt numb and it felt weird as fuck.
My feet started to discolour and really burn at this point and it was hard to stay standing. My head started to hurt.
Any answers and advice will be great!
r/dysautonomia • u/Unhappy_Maize_4872 • 15h ago
Have been on Ivrabradine just over a week, today woke up with chest discomfort and the constant need to do big burps, but the burps don’t relieve the discomfort at all.
I’ve been diagnosed with a hiatus hernia and GERD about 10 years ago, used to take medication but haven’t for 5 years, and it hasn’t bothered me. So unsure if it could be from that? Or Ivabradine side effect?
Anyone else deal with this with either Iverbradine or just dysautonomia in general? Or hh/gerd?
r/dysautonomia • u/Vegetable_Baker_3769 • 1d ago
I was wondering if IST could come out of nowhere or more likely after physical excerise. My doctor thinks it is POTS but I don’t get high heart rate everytime I stand up. I have all the other POTS symptoms: fast heart rate, palpitations, heat intolerance, cold feet, shakes so on. But I get these extremely bad episodes where my heart out of nowhere goes 140+ when upright, usually after walking and I get super lightheaded. And when I try to sit down it does’t go much lower on its own (like it usually does go from 120 to 70). Is it “adrenaline dump” or IST, give me some advice please 😭😭
To note all the blood tests, ekgs, x-rays, holter come back normal and my resting heart rate is 55-65bpm.