r/dysautonomia

Anyone feel significantly better with compression wear or sodium + fluids, particularly with Orthostatic symptoms? Does it actually make a difference? I never took these seriously, I always thought my condition needs much more than such conservative treatments. Wondering if I’m wrong. Please share if and how compression wear and sodium + fluids help you

I have diagnosed pots, and many other symptoms congruent with dysautonomia.

My legs/feet fall asleep multiple times a day when I’m sitting at a desk or on the toilet. Or in hands when scrolling on phone while lying in bed.

Is this common in Dysautonomia? Or is this something everyone else also experiences?

nothing is scarier than being undiagnosed and not truly knowing. every single day it only gets worse and worse. i’m in pain all day, all night, whether i’m standing or laying, im always in pain and always feel like im on the verge of passing out. functioning is so, so hard. i’m so exhausted and miserable, my brain fog is so severe i have to think extra hard about anything i want to say or do. i feel so out of it and disconnected. it’s so sad thinking about how i felt just a few months ago and thinking it was bad, having no idea it could get even worse and now wishing i could go back in time to how i felt back then. i suspect mcas and dysautonomia but i have no confirmation, i’m still waiting on blood test results and any sort of word from my doctor. im only on step one of a very long journey and it’s terrifying. it feels like there’s no end to how bad it can get. i hate the unknown. i’m so so so scared and it feels like no one is taking this seriously. i don’t know what to do or how to comfort myself anymore

How do you manage adrenaline dumps when you’re trying to sleep? I’ve been sleeping elevated on a wedge pillow which has helped but isn’t the most comfortable, what is your favorite thing that helps?

I had my TTT today with local cardiologist at an electrophysiology clinic. It was not fun. I did not receive a copy of my results, but was told my resting HR was in the 70s, then jumped into the 80s during the first 10 minutes of the test, then jumped up into the 110s + 120s after the 10 minute mark, at which point I was feeling pretty terrible (lightheaded, flushing, couldn't keep my eyes open, weak limbs, brain fog) and continued feeling so until about the 17 min mark, then started to feel a bit more alert for a minute, then started going downhill again. I have not fainted, but this was the closest I have come.

The total test was for 20 minutes. The cardiologist said it was not POTS because I did not have enough of a HR jump until the 10 minute mark (which he called "unusual" or "odd" or "interesting" or something to that effect). He concluded by telling me to keep taking electrolytes and to do recumbent exercise to strengthen my core. I was feeling too disoriented to ask any questions in the moment. I have yet to see and discuss with my PCP, but feeling like today was a dead end.

EDIT: Forgot to include, they told me my BP was stable throughout the test. I only saw it during the rest phase, when it was in the 100-105/80s range.

I know it's not the end of the world but. I just really, finally want a diagnosis. My TTT is in 9 days and I'm dreading it. I'm scared that it won't show anything and that my doctors will give up on trying to figure out what's wrong with me.

It’s not the pain, but the entire process activates such a bad vaso vagal response that I feel like I’m going to pass out. I’m weak, and I usually end up with a headache for the rest of the day. (no, it’s not from fasting).

Has anyone tried a non medication route with compression stockings?

I have had really bad side effects from medication so I don’t want medication for my condition. My cardiologist wrote me a prescription for compression stockings as I read it could help. Has anyone tried it? What’s your experience? Where did you buy it?

I was told to post here: I am trying to find people on Reddit who have the same issue as me. I am suffering for the past four years with dizziness and severe high BP spikes (170/125) which come on randomly after standing for too long or walking at the mall for too long. I have gone to the hospital and they don’t anything to control it and chalk it up to anxiety. Hunger, over exercise, fatigue or lack of sleep can cause it as well for example, I feel more pressure in my neck and head—it’s feel like adrenaline is rushing in my neck and my heart pulses harder. My diastolic is always 85-95 and systolic is normal. My heart rate is normal too. It’s been 4 years and all I am taking is 2.5mg amlodipine which doesn’t help during spikes. I’ve tried atenolol but heart rate goes to 50. I have taken clonidine recently which reduced the BP but doesn’t remove the Anxiety/adrenaline rush aspect of it.

Background: I don’t know if anyone here has any similar stories. This got especially worse since I started tapering off benzodiazepines. I have lost over 40lbs cause my intestinal motility is lazy and I don’t feel the urge to go—that happens every couple of months like a flareup—not sure if it’s related. The situation is effecting me a lot and I have to lay down flat in bed for a few hours to keep whatever adrenaline pressures down. I don’t know if Benzo caused it or was masking some underlying issue but I don’t remember having this issue in my 20’s (now in my 30’s).

The TT test showed a positive tilt table test for Vasovagal Presyncope associated with anxiety and Orthostatic Tachycardia on autonomic testing today. There is evidence of increased beta-adrenergic hypersensitivity. There is no evidence of Autonomic Failure, Baroreflex Failure, POTS and Neurogenic Orthostatic Hypotension.

THE ONLY THING that helps during these attacks is Lorazepam. No it’s not just simple mental anxiety, its very physical!

I’m a bit discouraged because my ND and MD said that semaglutide would really help my dysautonomia symptoms but it’s made them worse. Dizzy, nauseous, bladder flares, gut issues, headaches anxiety, irritation, brain fog, dissociation and then like feeling kinda depressed and constantly worried and ill. Did anyone else experience this?

TLDR:
Heatstroke occurred in Nov 2025 (9 months ago)
Developed suspected dysautonomia, exercise intolerance and PEM as complications
Largely recovered from heatstroke itself - now battling remains of dysautonomia & PEM
Looking for personal stories of PEM and dysautonomia recoveries or long term recoveries from heatstroke + any specialist recommendations I haven’t already listed

*****

I got heatstroke travelling overseas in November 2025 and experienced the following symptoms on the day of the event:

Outside temp was 30 degrees Celsius with 80%+ humidity
Irritability
Intense Nausea
Stomach upset
Lightheadedness/feeling faint
Feeling overwhelmingly hot and unable to cool down
High fever
Anxiety/panic
Shivering/trembling
Heartbeat rapid and strong
Skin pale and clammy
Confusion/altered neurological state
Stopped sweating completely and skin went dry
Skin turned red and hot to the touch
Began slipping in and out/close to losing consciousness

I didn’t know what was happening and would have spent at least 2 hours in the heat with active symptoms at the time before I was able to make it back to the hotel.

Went to hospital 3 days later after due to having relapse episodes of the same symptoms and unable to have the air conditioning warmer than 18 degrees Celsius. Blood tests were conducive to heatstroke but thankfully no signs of organ damage.

Developed dysautonomia experiencing huge adrenaline rushes and crashes and exercise intolerance upon returning home. I was unable to stand longer than 5 minutes and struggled to walk, and my legs would ache in agony after standing in the shower each night. I couldn’t drive or tolerate being a passenger in a vehicle so seeking medical help was difficult. I lost 7kg at this point which was over 10% of my body weight due to being unable to eat after each adrenaline dump. At its worst I was having 5-8 episodes per day including through the night.

At this point I was prescribed propanolol (beta-blocker) which helped manage the adrenaline issues. It took one month for my body to start sweating again and at first I could only sweat through my feet for another month before full normal perspiration returned.

Over the next couple of months I built up being able to tolerate being a passenger in a vehicle, to being able to drive myself, to being able to drive up to 30mins at a time. My heat intolerance improved and was actually one of the first symptoms to recover significantly (my car didn’t have working air conditioning at the time so was effectively doing exposure therapy- it worked!).

Months 3-8 since heatstroke event:
Focused on exercise tolerance (improving but still limited)
Reducing dosage of propanolol (almost off the medication now)
Diversifying diet and re-introducing new foods
Digestion improving
Heart rate and blood pressure improving
Putting weight back on (at month 9 I have finally put on 5kg of the 7kg I lost)

Somewhere along the line I developed Post-Exertional Malaise or PEM. It shows up 24-48 hours after I’ve extended myself too far whether it’s physical activity, social activity, cognitive load or a combination- even if I feel good in the moment of the activity.

Specialists I have seen so far:
General medicine specialist - prescribed iron infusion & B12 injections
Gastroenterologist - monitoring digestion improvement/progress
Neurology clinic specialising in dysautonomia - performed tilt table test
Cardiologist specialising in POTS & dysautonomia (seeing soon)

At month 9 of recovery, dysautonomia and PEM are the biggest struggles I’m dealing with and have made recovery incredibly non-linear and challenging. I’ve worked my full time job throughout my recovery (albeit with more sick days than the usual person) which adds an extra strain but don’t really have a pathway of taking extended time off.

My current supplements I’m taking to support recovery:
Co Q10 enzyme
Ashwaganda
L-theanine
Magnesium Glycinate
Creatine
Protein
Electrolytes (usually 1x per day)

Two days ago a PEM crash started after going on a big walk the day before. I slept for 12+ hours, couldn’t memorise a 5 item grocery list, entered my card pin wrong, and couldn’t follow google maps directions. Major brain fog and fatigue which is still continuing 3 days on.

Would love to hear from anyone else that has had a similar recovery from heatstroke or just a long term recovery in general. I have recovered soooo much from where I was 8-9 months ago which gives me a lot of hope but still certainly have my hard days.

Does it get better? Will I ever get back to normal where my brain and body can function like a normal person? 🥲 Are there any other specialist avenues I should go down?

I have a fuzzy ice pack (this one) and found out that if I go to sleep with it laying on my chest, I fall asleep so easily and sleep better the whole night. My room stays cool already, but having the extra cold on my chest feels so relaxing. Thought I'd share in case it helps anyone else ☃️

As title says.
How would you describe it?

I (19m) was diagnosed with general dysautonomia after I’ve been having symptoms since September. Weirdly enough I was doing better for a while, up until now..
Yesterday I didn’t really have an appetite as I was under a lot of stress, so I didn’t eat any proper meals. In the evening I suddenly felt panicky (which is a recurring symptom of mine and I hate it), so I ate some salty meat before going to sleep. I jolted awake a few times. Today I woke up feeling the same way I did in October. I was shaky and felt quite weak, my face was flushed and I feel like the world is spinning. This has caused me three breakdowns so far, since I’m terrified this means I’m back at the worst of it. I also got so worked up I’m nauseous now so that’s great too.. I ate some ansjovis, drank chocolate milk and orange juice so far, but I don’t feel okay and I’m easily afraid. September was traumatic and I’d sell my left kidney not to end up there again.

I'm about to start fludrocortisone soon and was wondering how others manage pms symptoms on it since I've read it has a moderate interaction with Advil and other NSAIDS. My cardiologist said it probably wouldn't cause issues but to avoid combining the two to be on the safe side. I find Advil really helpful for pms related GI symptoms, headaches, cramps, etc so not looking forward to it not being part of my toolkit.

I am diagnosed with POTS, not diagnosed with ME/CFS but wouldn’t be surprised if I do have it given how bad my PEM (post-exertional malaise) has been all month. I have been moving into a new apartment for the past couple weeks (purposely overlapped my leases so I would have more time) and it has taken truly everything out of me. I am at the point where I am just feeling so exhausted and sick every day, and it’s becoming increasingly difficult to finish the move.

My question stems from one of the main symptoms I’ve been having, which is a sore throat. I thought I had a virus at first because of this, but it hasn’t gotten any better or worse and otherwise feels more like PEM than a real sickness. Is it normal to get a sore throat with PEM? It seems like a weird symptom to have if this is just caused by over-exertion. It’s possible that I also have acid reflux or something else that could be contributing. My other main symptoms have been headache, fatigue, and feeling like I have a fever even though I don’t. Would love to hear if other people have similar experiences!

I'm 34 and I thought for sure my symptoms would have peaked by now but I'm getting worse and worse even with medication and I'm curious how many others are experiencing this?

so recently ive noticed almost everytime i have sex i get Bad cold symptoms. like real bad congestion, coughing, migraines, ear pain, and muscle pain. idk what exactly causes this but it gets real annoying. this has became more of a thing for me after developing dysautonomia (docs still don't know if its pots or vvs), before developing it ive never dealt with this. idk if anyone else deals with this and could have advice for it.

I've had symptoms ever since I was a teen but they gaslit me into thinking it's nothing and I'm a crybaby.

Ever since I was very young I was in charge of stuff around the house, helped with money and other things.

I moved out very early so I was never a financial burden, all I did was keep helping them and being very caring.

So anyway, At 29 it got much worse and I became disabled.

Their reaction was getting angry, being ashamed like I've killed someone and claiming I'm a POS that ruined their lives lmfao

I don't ask for an ounce of help. I don't share my problems with them and keep very polite contact and make sure they get to see their grandkid.

Just wanted to share. As a parent myself I don't get it.

They are of a very specific culture so this may be it, but still.

Just joined. My wife has dysautonomia. She deals with gastroparesis, POTS, neurogenic bladder, etc. Today, she showed me an article about body temp control. She's always very hot or very cold. I read the article, handed back her phone and joked and said, "It's all in your head". Without missing a beat, she says, "Of course it is. It's neurological." I just can't get one over on her. And this is just one of the reasons I love her.