u/Electrical_Court8649

Does anyone have POTS and IBD that started around the same time or consecutively? I have untreated/treatment refractory microscopic colitis for 15 years..... and have never tried the next level up treatment - an immunosupressant. My GI doc is suggesting it .... but im wondering if its worth trying and maybe will it help my POTS too? Could POTS in some cases be autoimmune? I wonder if the gut inflammation could have triggered my POTS? My gut issues developed first (sudden chronic diarrhea) at 12 years of age. I am now 27. Or are they just occuring in coincidence? Thoughts anyone?

Does anyone have POTS and IBD that started around the same time or consecutively? I have untreated/treatment refractory microscopic colitis for 15 years..... and have never tried the next level up treatment - an immunosupressant. My GI doc is suggesting it .... but im wondering if its worth trying and maybe will it help my POTS too? Could POTS in some cases be autoimmune? I wonder if the gut inflammation could have triggered my POTS? My gut issues developed first (sudden chronic diarrhea) at 12 years of age. I am now 27. Or are they just occuring in coincidence?

Can high doses of dexamphetamine (30mg+ ) cause dysautonomia that goes on for 11+ months ?

I have POTS already and am prescribed dexamphetamine for fatigue and last year I developed dysautonomia symptoms different from pots , and I’m still slowly recovering. It’s been hell. Wondering if it’s safe to go back on dex or if it could have caused it ?

When I was dx with POTS 15 years ago the clinical pharmacological doctor I saw put me on a number of meds to try to help control symptoms/ improve my functioning. This included a beta blocker , midodrine (which was ceased as it didn’t help) and dexamphetamine (used off label to help with fatigue and blood flow). Years later we added ivabradine to the mix.

11 months ago i was working very hard in my job as a psychologist and generally was quite run down but still coping by using more dexamphetamine than usual and therefore not eating enough due to appetite suppressant effects. I also have chronic microscopic colitis (diarrhea) untreated. At some point in early June I started having more migraines that were different to ones I’d ever had before (which I assumed were just linked to PMDD that had developed a few years earlier), and then felt this pressure in my head sensation, my ears were hot flushing randomly and in response to heat, my right eye was twitching heaps and my stomach started burning, gurgling heaps and I felt nauseous …. I went to hospital (and only thing that came back was faecal calprotectin elevated at 325, <50 is normal range)… and at the hospital I caught flu b , so days later on top of all of this I was bedridden with flu…. Then after I recovered from flu everything got worse and I started getting these insane adrenaline dumps , I started getting formed stool again temporarily for the first time in 15 years despite the colitis still being untreated…. couldn’t eat for months due to constant nausea so lived off sustagen , had hypnic jerks every night over and over when falling asleep, hot flushes to face and ears , prickling electric shock feelings through my face, crying spells and intense emotional swings for no reason …. & so much more… my neurologist says they are adrenergic dysautonomia symptoms and it’s a “post viral illness” separate from my usual POTS… they are slowly reducing /disappearing month by month. No medications my neurologist tried helped. Just seems to be time. I am wondering how long this might go on? And also, if it were just a post viral state why did i have some of these new symptoms before the virus …. Do you think the actual initial catalyst could have been stress or Dexamphetamine overuse or even my gut inflammation? Once I am recovered enough to work I want to go back on the dex as usual but don’t want it to make things worse if it was a cause … Hope someone might have some insights or logic to share here

When I was dx with POTS 15 years ago the clinical pharmacological expert I saw put me on a number of meds to try to help control symptoms/ improve my functioning. This included a beta blocker , midodrine (which was ceased as it didn’t help) and dexamphetamine (used off label to help with fatigue and blood flow). Years later we added ivabradine to the mix.

11 months ago i was working very hard in my job as a psychologist and generally was quite run down but still coping by using more dexamphetamine than usual and therefore not eating enough due to appetite suppressant effects. I also have chronic microscopic colitis (diarrhea) untreated. At some point in early June I started having more migraines that were different to ones I’d ever had before, and then felt this pressure in my head sensation, my ears were hot flushing randomly and in response to heat, my right eye was twitching heaps and my stomach started burning, gurgling heaps and felt nauseous …. I went to hospital and there I caught flu b , so days later on top of all of this I was bedridden with flu…. Then everything got worse and I started getting these insane adrenaline dumps , I started getting formed stool again temporarily for the first time in 15 years despite the colitis still being untreated…. couldn’t eat for months due to constant nausea so lived off sustagen , had hypnic jerks every night over and over when falling asleep, hot flushes to face and ears , prickling electric shock feelings through my face, crying spells and intense emotional swings for no reason …. & So much more… my neurologist says they are adrenergic dysautonomia symptoms and it’s a “post viral illness” separate from my usual POTS… they are slowly reducing /disappearing month by month. No medications my neurologist tried helped. Just seems to be time. I am wondering how long this might go on? And also, if it were just a post viral state why did i have these new symptoms before the virus …. Do you think the actual initial catalyst could be stress or Dexamphetamine overuse ? Once I am recovered enough to work I want to go back on the dex as usual but don’t want it to make things worse if it was a cause … Hope someone might have some insights or logic to share here

Hi everyone! I have had POTS and microscopic colitis for 15 years. I am 27 now and work as a psychologist! I am wondering /curious as to whether many others here with POTS also have microscopic colitis or other forms of IBD, and/or has immunosuppressant medication ever helped either one of these conditions ?

It’s the only treatment I’ve never explored over the years. Interestingly, the only abnormal markers that ever showed in my bloods when investigating over the years were positive ANA titre > 1280 speckled pattern, low complement c3, I also have a selective IgA deficiency, family history of autoimmune disease…

The first ever symptom I had indicating issues developing for me was sudden watery diarrhea, before my POTS developed about 2 years later. The pots started about 1-2 weeks after I had my first influenza vaccination and remember it made me very sick for a couple of days that I was freezing all night and slept so long and deeply that I wet the bed as a 12-13 year old!

What’s even more interesting is that last year in June I had what I consider the worst virus I’ve ever had and tested positive for flu b. I had prednisolone and antibiotic to help me fight it. A few weeks later my bowels suddenly turned formed again for the first time in 15 years, but then I developed an array of horrible nervous system symptoms that have lasted for 11 months now (although are slowly month by month going away). My neurologist is very good and has been helping me and monitoring my recovery since June. She has a special interest in autonomic disorders , post Covid /long COVID sequelae ,etc. She says I have post viral dysautonomia (alongside my usual POTS) and thinks my immune system overreacted to the virus and attacked the neurons at the back of my brain. It seems that time is the only thing that is healing me. Weirdly my ‘typical’ pots symptoms that have remained the same for 15 yrs didn’t worsen from this.

All of this makes me wonder if my POTS is strongly linked to some sort of autoimmune issue or dysregulation.

Would love to hear anyone’s thoughts , experiences, ideas etc

Does anyone else wake up with queasy nauseous off stomach every day? Anti nausea medications don’t work. It tends to get better in the late afternoon/evening. Makes me so uncomfortable it’s hard to engage with others and speak. Some days it’s less intense and easier to talk and do things. For 9 months I also struggled to get any food down but I am able to eat now in the most recent 2 months my appetite has come back. Is it likely that the queasiness will eventually go along with the other symptoms that have gone away?

Hi everyone,

I’ve been trying to make sense of what’s happened to my body over the past ~10 months, and I’d really appreciate hearing from anyone who has experienced something similar—especially in terms of recovery trajectory.

Main question:

I am improving, but extremely slowly. Do people with post-viral syndromes like this usually continue to improve over time? Or plateau?

⸻

Background

•	27F, had stable Postural Orthostatic Tachycardia Syndrome (POTS) for \~15 years

•	Fully functioning before this (working full-time as a psychologist, exercising, normal life)

•	Longstanding microscopic colitis (chronic diarrhoea baseline)

⸻

What happened

Phase 1 – Pre-virus (early June 2025)

About 2 weeks before I got sick:

•	Nausea, flushing (ears/face)

•	Increased migraines (with aura)

•	Eye twitch (right side)

•	Head pressure, light sensitivity

•	Tingling hands/feet

•	Gut flare → faecal calprotectin 325

•	Diarrhoea, reflux, burning stomach

•	Hot/cold swings (temp dropped to 34.3°C at one point)

•	Felt like a “full body crash”

I went to hospital → viral tests negative at that stage.

⸻

Phase 2 – Influenza B (mid June 2025)

~4 days later:

•	Tested positive for Influenza B

•	Typical flu symptoms BUT also:

•	Repeated waking every 5–10 min with:

•	burning stomach sensation

•	intense “panic-like” body feeling (no thoughts, just physical)

Eventually treated with:

•	Prednisolone + antibiotics → flu improved

⸻

Phase 3 – Early post-viral (July–August)

This is where everything changed.

•	Went back to work briefly, then relapsed repeatedly

•	Developed:

•	Severe right-sided abdominal pain under ribs

•	Sudden shift from lifelong diarrhoea → formed stools/constipation (very abnormal for me)

•	Multiple hospital admissions + scope → only mild gastritis

Then:

👉 Adrenaline dumps began

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Phase 4 – Severe dysautonomia phase (Aug–Dec)

This was the worst period.

•	Intense adrenaline surges (like panic attacks without thoughts)

•	Followed by crashes → extreme fatigue/yawning

•	Constant:

•	Nausea / “off” stomach (not typical nausea)

•	Flushing + overheating episodes

•	Goosebumps, chills

•	Tingling, burning sensations

•	Hypnic jerks when falling asleep

•	Severe sleep disruption:

•	Waking early with adrenaline rush through stomach

•	Unable to fall back asleep

Also:

•	Appetite basically gone

•	Periods of dissociation

•	Nervous system felt hypersensitive to everything

⸻

Phase 5 – Gradual improvement (Jan–May 2026)

Things have improved, but slowly:

✔ Adrenaline dumps → completely gone since March 11

✔ Appetite → much better in last 2 months

✔ Can eat more normally again

✔ Less burning stomach

✔ Less reactivity to heat (e.g., baths improved)

BUT still dealing with:

•	Morning adrenaline/nausea wake-ups (daily)

•	Persistent “off” stomach / queasy feeling

•	Flushing episodes

•	Goosebumps / nervous system surges

•	Occasional hypnic jerks

•	Mood drops linked to physical symptoms

Bowels have mostly returned to my old diarrhoea baseline.

⸻

Treatments tried (no real effect)

•	SSRIs (sertraline up to 200mg)

•	Clomipramine

•	Agomelatine

•	Clonidine

•	Mestinon

•	Ondansetron

•	Antihistamines (Zyrtec, famotidine, ketotifen)

•	GLP-1 microdosing

👉 Nothing really changed it — improvement has been time-based

⸻

My interpretation (open to thoughts)

This feels like:

•	Post-viral dysautonomia

•	Gut–brain axis disruption

•	Nervous system stuck in hyper/hypo oscillation

The weird part is:

👉 Symptoms started before the virus, then escalated massively after Influenza B

⸻

Where I’m at now

•	\~10 months in

•	Clearly better than the worst phase

•	But still not functioning normally, especially mornings

⸻

My questions

1.	Has anyone had a similar slow, month-by-month improvement like this?

2.	Did it continue improving beyond 10–12 months, or plateau?

3.	Did the morning adrenaline/nausea pattern eventually resolve?

4.	Does this sound like long COVID-type physiology even though it started with flu?

⸻

I feel stuck in that space of:

“I am getting better… but will it actually fully resolve?”

Would really appreciate hearing your experiences.