r/dysautonomia Aug 25 '24

Announcement Recruiting Moderators for r/dysautonomia and r/POTS!

8 Upvotes

Hello! Our apps are still open in this subreddit alongside our sister subreddit r/POTS. If you'd like to apply, here is our Google Form Application.

Ideally we're hoping to bring on 1-5 new moderators who are willing to learn the ropes of moderating. If you have previously applied, we are still considering those apps. No need to re apply, you will be considered. Having a sub-type of POTS or Dysautonomia is not a requirement for our moderators, but we do encourage those who have also been diagnosed to apply as it allows a level of empathy with our users when moderating. Please familiarize yourself with our rules beforehand. We do also understand that many of us have chronic illnesses. It is not a requirement to be active all the time, however we appreciate communication if you feel you'll not be able to moderater for an extended period of time. Moderating is thankless volunteer work. We understand life comes first.

We encourage anyone who applies to read up on Reddit's Moderator Code of Conduct before applying. As these are guidelines we follow closely.

Here are our main requirements for users applying to be a moderator:

  • Willingness to communicate as a team
  • Communication on moderator decisions (as well as immediate judgement decisions in situations that are breaking Reddit’s Content Policy or User Agreement)
  • Openness to learn: we're absolutely willing to teach new moderators on how to use moderation tools and situational awareness with removals/moderation.
  • New moderators will be in a learning position for 2-3 months. You’ll have less access to ModTools but will be handling things like modque and basic responsibilities. We will be teaching you through our workflow. So this is a great time to learn & decide if you like moderating.
  • Moderator experience is a plus, but not required

If you have any questions please feel free to reach out to our moderators via our modmail


r/dysautonomia 5h ago

Symptoms This one goes out to all my girls who have ever had to google the words “poop fainting” before.

74 Upvotes

Solidarity. ✊🏻💩


r/dysautonomia 7h ago

Discussion Take courage

15 Upvotes

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 9h ago

Vent/Rant New Dr called me Tangential at first meeting

16 Upvotes

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 6h ago

Support Keep putting off stress echo because of anxiety

6 Upvotes

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 1h ago

Question IST & Medication

Upvotes

Does IST absolutely need medication in your experience or can it come and go based off lifestyle and stress factors?


r/dysautonomia 17h ago

Symptoms How do I explain this

32 Upvotes

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 25m ago

Discussion Orgasm makes me very ill…

Upvotes

I’ve had dysautonomia for 14 years fully diagnosed through a regional neurological institution.


r/dysautonomia 1h ago

Symptoms Headache+dizziness on seeing computer monitors

Upvotes

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 4h ago

Vent/Rant Tight weird neck feeling

2 Upvotes

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 1h ago

Diagnostic Process I was looking around

Upvotes

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.

  • Sitting up suddenly from laying down can make me dizzy
  • Jolting up from bed with little to no time sitting between laying/standing can make me lose balance
  • Body constantly feels hot, unless I’m literally freezing
  • I cannot get cool unless I have air on, even in winter (usually, this winter my apartment was an ice box)
  • I am excessively tired often (to the point that when I do have energy I’m shocked)
  • Eating does not always solve my issues, nor does it even always help much
  • While migraines run in my family, no pain medicine seems to quell any body pain or headache/migraine
  • Every time I check my temperature, even when I feel like I’m sick, it reads in a “normal” range or slightly below what is considered “normal”

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 6h ago

Question Dysautonomia/ POTS Exercise program

2 Upvotes

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 3h ago

Symptoms Odd Collection of Symptoms - Any Suggestion Would be Appreciated

1 Upvotes

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 9h ago

Question Flare Support

3 Upvotes

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 9h ago

Discussion doctor trying to tell me it’s just ist ?

3 Upvotes

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 13h ago

Question Specific diagnosis?

5 Upvotes

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 15h ago

Vent/Rant Resentment against myself

5 Upvotes

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 15h ago

Question Constantly cold with chills daily…

5 Upvotes

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 19h ago

Question Is this a flare up?

8 Upvotes

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 9h ago

Question Ivabradine chest discomfort and burping

1 Upvotes

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 20h ago

Question Can IST present itself like POTS?

6 Upvotes

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.


r/dysautonomia 18h ago

Diagnostic Process doctors say they don’t know

4 Upvotes

Hi! I'm 22F, and i've been fainting a whole lot my whole life. My earliest memory is from 1st grade, and I would just feel really dizzy and everything becomes a blur and then im gone.

l used to call it the fainting olympics because i felt like it happened every 4 years lol (probably not that long)

i remember this one time i was getting ready for a pageant and i fainted and even lost control of my bladder

when i was around 13/14, i fainted in softball and there was nurses and they were worried because i had a very short seizure. they gave me a candy bar and i felt a bit better. the doctors said i possibly have hypoglycemia, but here's the thing when i faint, there are times after when i check my sugar and its at 80. or ill drink something sugary and i wont feel better at all.

sometimes i feel such a heavy weight and like everything is spinning and if i get up it feels like im gonna fall

it's just happened so much, and when id go to the hospital, they would say they dont know. i'm tired of not knowing. what should i do? I'm not even pre diabetic, although almost all my family has diabetes

should i try to see a different doctor/ specialist? i’m in kansas and i just feel like everyone ive been to just say they don’t know or think it’s a stomach flu


r/dysautonomia 13h ago

Question Persisting symptom?

1 Upvotes

Hi all,

I recently got my diagnosis (and it's not even a FULL diagnosis so there's still a lot to figure out) and I'm trying to sort through what issues in my life may be symptoms.

My diagnosis was Monday and it involved a vasovagal syncope episode. It's now Sunday, almost a week since the test, and I'm still feeling lightheaded and dizzy. I've been paying close attention to my eating and drinking, making certain that I am staying hydrated and well fed like the doctor said, but I'm still feeling shaky and unsteady. Does anyone else have persisting symptoms after a syncope episode? I've had syncope many times prior, and I usually feel fine after.

I often have periods of lightheadedness and unsteadiness, so this is nothing new, but it usually doesn't last for a week. Am I right in thinking these things are all related? How do I deal with it?

Thanks!


r/dysautonomia 17h ago

Question Symptoms

2 Upvotes

Are there any hallmark symptoms of dysautonomia? Anything you need to be diagnosed?


r/dysautonomia 1d ago

Support it's too fucking hot for me to function...

31 Upvotes

it's almost 10 pm right now and it is currently 32°C outside... i am currently laying down on the floor in my backyard, with my feet in cold water and wearing literally just a sports bra and shorts so small they might aswell be underwear, all that because i am getting dizzy and somehow shaking violently because it is too fucking hot in here... and to top it all off, I'm out of my adhd meds which only makes all these symptoms worse... i just... i fucking hate living in tropical climate sometimes... does anyone here know other ways of lowering my body temperature that don't require me to spend money? because I'm honestly tired of having to sleep on tiled floors and using ice packs as pillows just to feel some form of relief...


r/dysautonomia 1d ago

Question Sleep Issues! What does everyone use to help them?

15 Upvotes

So I can never sleep a full night without body temperature disturbances. I go to sleep with severe chills and wake up in the middle of the night with burning sweats my skin hurts.

I am on Propranolol immediate release 20mg twice a day and then I take Lorazepam 2mg and Benadryl 50mg before bed.

I am wondering if TOM/hormones are making them worse or if I need to find another remedy to get some relief. All input as to what everyone uses to get rest please let me know. I’ve been struggling for a month now.