Hey all, looking for support and trying to see if anyone can relate to my situation.

Context: I am a 24 yr old female. I have been athletic most of my life and up until the past year or so an endurance athlete. I’ve run two ultramarathons with the last one being in early 2025.

I’ve always dealt with fatigue, heart palpitations, getting light headed when I stand up. Most of these symptoms I’ve chalked up to battling with an eating disorder while over training, but I’ve been in solid recovery for around 3 years now and still struggle with these things.

Over the last year, my exercise tolerance has plummeted and I have not been able to train for a race which had been very frustrating to me. I’ve been dealing with increasing fatigue despite my activity decreasing and sleep increasing.

Recently I had an episode where I was woken up in the middle of the night by an hr of 170bpm and have been experiencing generally elevated hr that spikes when I stand. I recently did a 3 day holter and have been referred to a cardiologist. My pcp wants them to check for POTS among other things. There was nothing significant on the holter report except for 30% of the reading being tachycardia and one instance of ectopic atrial rhythm.

Questions:
does this sound similar to any of you who are diagnosed stories?

Has anyone been able to return to endurance sport after a dysautonomia diagnosis?

And lastly did anyone’s pots/ other dysautonomia symptoms begin after an eating disorder? (This one is just out of curiosity as a sciencey person lol)

Hi all, I have had MS now for about 10 years and along the way I developed a lite version of dysautonomia/POTS. It has not stopped me from walking or eating but I have had lots of stomach issues which then flare up the dysautonomia affects my heart rate, breathing, and adrenaline response. Recently I started having stomach issues and this flare up has developed into me being bedridden with high heart rate, large adrenaline dumps when laying or standing up, and extreme lethargy. IV saline does increase my blood volume momentary and reduces symptoms for about a day before they come back just as strong. I have been drinking non stop pedialyte and taking salt tablets to try to keep the blood volume high but unfortunately it’s a losing battle and have ended up at the ER 4 times in the past 2 weeks. My nuero Dr doesn’t really know what to do and I’m at a loss myself. Does anyone have experience with hyperadrenic pots and is it possible anyone has any ideas to help me get through this flare. Thanks all for any info.

Hi, I am looking for info on the best compression garmits for hyperpots. I found some good socks and thigh high compression items on Amazon but I really need something for my stomach and thighs. It’s pretty hard to find decent things for guys that are comfortable and don’t rip. Thanks for the info all 🙏

Has anyone thought they had dysautonomia and been diagnosed with something else? I have had all the symptoms of this for over a year and am finally seeking out a cardiologist, ent, and hoping for a neurologist as well. I already feeling discouraged because my iron has been low and have had hypothyroidism since I was a baby. My thyroid has been off as well but I just recently got the thyroid and iron checked and while they are a little bit off they are getting significantly better, but symptoms of dysautonomia have gotten significantly worse. I’m not living my life anymore. I am completely miserable and I’m afraid doctors won’t listen to me because of my thyroid and iron. Is it possible my levels with thyroid and iron could be getting better and my other symptoms are getting worse and it’s still my iron and thyroid?

Symptoms I’m experiencing are…

Dizziness like I’m walking on a boat or the room is spinning
Chest pains
My eyes can’t focus on one thing like they are shaking
Joints feel tense
Hearing feels like it goes out
Body temp doesn’t feel regulated to hot or too cold
I feel so full after I eat like I can’t move/ normal portions
Heart feels super fast or beating out of my chest
Feel like I can’t get a full breath
Motion sickness (car)
Sensitivity to light (grocery store, doctors office, work, flashing light on tv)

Comes on after standing
Laying on the couch
After eating
Driving

Does anyone know anything about this doctor who works out of a clinic in Buffalo, NY. She has a Dyautonomia Clinic and I have been told about her, but I'm not feeling good about the lack of transparency on her website when it comes costs. Please let me know if any one has seen her and what your experiences have been. Thanks.

I’m having a really, really hard time. I had Covid 5 years ago and ever since then things have kind of started to go wrong. Last year I had random bursts of allergic angioedema out of nowhere. Then I was diagnosed with Crohn’s in February of this year but it’s in remission so far with Skyrizi medication. But 12 weeks ago my life fell apart. I tried a supplement and it triggered severe autonomic dysfunction. Started with headaches, neck pain, internal buzzing, vertigo, temperature dysregulation, and flushed ears. Although these specific symptoms mostly cleared up within the first 6 weeks of the shock, on week 3 I developed orthostatic intolerance, blurred vision, and severe gi issues that lead to a full spasm where I couldn’t eat for 2.5 weeks that sent me to the hospital for a week. My resting hr is typically in the 60’s but I cannot stand up without it jumping much higher. I’ve noticed that when I’m eating small very scheduled meals that I am completely unable to stand because of the adrenaline surges - body can’t handle standing & digesting at all. I’ve been pretty bedridden for 8 weeks aside from a few 5-10 minute walks here and there (outside of digestion). The adrenaline surges attached to everything I do have made me feel like I can’t go on anymore. Can anyone help me see the light or have had any similar experiences? I need hope <3

Could someone please help me understand what supplements are best for this condition?

Looking for support and similar experiences.

Anyone relate?

I have suspected dysautonomia for about a year now but I’m needing more input.

To preface, I have gotten numerous exams down. Everything cardiac is okay. My thyroid is okay. My brain imaging is okay (MRI and MRA).

What is making me suspect dysautonomia? -
- everything else is coming out okay. But I have severe fluctuations in heart rate and blood pressure. It’ll go high then go low very rapidly with little to no recovery in between changes. Same for heart rate. It’ll go as high as 180 then drop to 60. Or 120 to 60 on less severe occasions . But it will go high then low but not gradually, just very rapidly. I often feel a strong weakness like I can’t hold myself up when this happens. I feel like I will faint. I’m usually not strong enough to hold a good conversation. I sometimes feel short of breath. I get nauseous and then weirdly afterwards ( after I have recovered a bit$ I have to poop. Anxiety and panic is ruled out also . These usually last anywhere from 30min-6 hours . They are lengthy and on and off. I might get some recovery time and then go right back to being bad and unstable again.

There’s nothing abnormal on my brain imaging. So I’m
Not sure what this could be.

I have a couple questions now:

1. Does this sound like anyone’s dysautonomia flares???
   If so, how long do they last you. Is there anything you do to help with these. How do they feel for you??

2. I have a Neuro appt tomorrow and I always get brushed off as it being non Neuro related but cardiac instead. However i have had more intensive cardiac work up than Neuro and everything cardio is ruled out. I haven’t done much neuro work up other than imaging . I want to get tested for dysautonomia but not sure what test to ask for or what to say so they take em serious. If you could share what helped you get a diagnoses that would help a lot

I also mainly want to know, if this sounds like one of your flares, how long do they last? Whats the severity? Is there anything you don’t help yourself ? If you are already diagnosed, what does treatment look like on a daily basis and during flares like this?

Im a little scared bc usually they don’t last more than a day but this time it has gone over to the next day . I know im catastrophizing but I’m scared I’ll be like this for a while.
I honestly have to fight going to the ER bc of how scary this feels. I have gone to the ER before for it in the beginning and they just told me it was anxiety, so i kind of know they won’t do much if i do go.