Post-viral/inflammatory dysautonomia — most symptoms improved, but painful afternoon /evening hot flushing + post-meal nausea/queasy off -stomach remain
▲ 9 r/LongCovid+1 crossposts

Post-viral/inflammatory dysautonomia — most symptoms improved, but painful afternoon /evening hot flushing + post-meal nausea/queasy off -stomach remain

Hey guys I have posted on here a bit throughout my 14/15 month journey. I developed a severe post-viral autonomic illness after having high gut inflammation (I have microscopic colitis), very high stress, being run down, overworked and relying on stimulants a lot to keep pushing then got a nasty influenza B in June 2025. Importantly, I’ve had POTS for ~15 years and my underlying POTS is basically the same as it was before this illness. This was a completely different set of symptoms almost like layered on top of my longstanding POTS.

At the beginning I had a pretty horrific collection of new symptoms, including:
intense early-morning adrenaline/autonomic surges, often waking me around 3–8am
Adrenaline surges throughout day at any point like a panic attack without the panic or hyperventilation just the body in such a horrific intolerable state of discomfort
Nerve tingling and burning sensations in arms and neck
severe nausea/awful “off” stomach, particularly in the mornings but for 10 months had no appetite and lived off Sustagen apart from like at 1am randomly at night when my appetite would sometimes suddenly switch on
Hysterical crying episodes all day or competely shut down and silent and depressed and irritable but felt physiological not psychological
diarrhoea/GI disturbance cramping pains and flushing adrenaline sensations through stomach every morning waking me in such a tormenting manner
dramatic facial and ear flushing/burning every afternoon and evening
episodes of prickling/electric-shock sensations through my face/eye
sweats/goosebump surges
chest pressure/shortness of breath
migraines with aura, head pressure and severe light sensitivity
tingling/numbness
brain fog with slowed thinking/speech but rarely
hypnic jerks over and over as I’d drift off to sleep and disrupted sleep by like intense dreams
significant heat/shower/exertion intolerance
Agitation unable to sit still rocking back and forth on chair or in bath
So nauseous some days I would just moan and groan and just roll around in bed

Thankfully, a lot of this has either completely disappeared or improved substantially over the past ~14 months. My neurologist believes this is centrally mediated post-viral autonomic dysfunction and expects me to at least return to my previous POTS baseline.

But two symptoms are being incredibly stubborn:
1. Painful facial/ear flushing: Almost every afternoon/evening my cheeks and ears become intensely hot and red. Sometimes patchy like the photos, sometimes much more widespread. It physically burns/hurts from the heat. Showers, baths, activity and heat can aggravate it, although it can happen spontaneously too.
Nothing I’ve tried gives meaningful relief. Even ice can make it worse when I remove it, almost like rebound heat.

2. Post-meal stomach symptoms: Anything more than a small amount of food can suddenly make my stomach feel queasy, heavy, bloated, excessively full and just profoundly “off.” Small amounts of fruit are generally much easier than a proper meal.
Has anyone had a similar recovery pattern where most of the severe post-viral symptoms improved first, but flushing/temperature regulation and GI symptoms lingered and eventually improved too?

And especially for the flushing: has anyone found anything that actually reduces the burning heat/pain? Medication, topical treatments, cooling strategies, anything? At this point I’m not even looking for a cure — I’d really like something that makes the episodes less physically miserable while my nervous system continues recovering.
I am so desperate for any bandaid relief from this hot flushing and so afraid I’m stuck with it …

Here are some links to pics so you can see the flushing … I am so sick of suffering. Need any hope , guidance, belief that this too will heal with time?

https://imgur.com/a/hcWaY3z

https://imgur.com/a/KoUpmwf

https://imgur.com/a/dOgUpjE

https://imgur.com/a/63BhPsw

u/Electrical_Court8649 — 2 days ago

ADHD medication overuse and taper - anyone been through this?

Hey guys. I’m a 28 yo female. Psychologist. Around age 18 when I started uni I started escalating the dexamphetamine dose - to keep up with everything despite having a chronic illness POTS and to push myself beyond my limits and try to reach the 'perfectionistic' bar I was setting… which I can now see was stupid but that’s hindsight for you. I achieved a lot and became valedictorian and did well in my work… things were going well but I was using too much Dex. Last year I became very unwell in June due to a virus that literally caused my brainstem to inflame and left my autonomic nervous system screwed… this illness basically led me to stop the stimulants cold turkey because I was just not even in the state to think about their use when I was so ill…and I got off them for 10-
/11 months, as I slowly recovered a painfully slow recovery from this horrendous long-COVID like illness. Anyway as I started to get better around 12 months… better enough to the point where I realized that my fixation on the remaining symptoms was not helping me mentally and I found it just emotionally impossible to get through just one day… so I found myself thinking I wonder if the dex would at least help distract me and to do some work on my laptop while I continue to recover… so now I’m back taking them but so quickly o started taking more and more to stay distracted and occupied…. as I felt I couldn't cope without it ....I find find myself taking 9+ 5mg dexamphetamine tablets daily and am so unsure how to navigate healing from this whilst still being able to work and function.... I told my my psychiatrist and he has recommended either an inpatient admission for a rapid detox but I’d have to wait 2 months after upgrading my private health for this, or he said to do a slow taper where my partner controls the meds and I reduce by just one tablet each week. Anyone got any advice or guidance. Feel so lost and ashamed …

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u/Electrical_Court8649 — 3 days ago

Fluctuating gut signals / Nausea ?

Does anyone experience a queasiness gut /stomach sensation? Like nausea but not normal gut nausea as it doesn’t respond to anti nausea meds. It feels like heavy bloated and just really off. Makes it hard to speak and cope. Haven’t been able to find anything that helps. It just fluctuates… and also, has slowly improved with time (over a year now) but still horrible enough at times to impair me to the point where I’m wondering if going through this is all worth it still.

If anyone can recommend anything … I have tried literally everything . Neurologist just says to wait and that these symptoms will also go with time like my others have slowly over the most recent 14 months…

Thank you so much.

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u/Electrical_Court8649 — 11 days ago

Facial flushing

Does anyone get facial and ear flushing that causes redness and severe pain due to the heat radiating from face. It happens to me every day always in the afternoon/evening. No matter what I do. It’s not MCAS and didn’t respond to any MCAS or other treatment.

If might not look like much but honestly It is so so painful and so hard to just distract from because it hurts so bad and is so hot and nothing stops it and I don’t even understand why it happens or what is happening :(

All my other symptoms have slowly been fading /have gone… my neuro says this one will too, can I believe that? :( I can’t live with this or do my job and it’s just mental torture spending all afternoon /evening in pain like this .

Looking for hope or anyone who has experienced this and if anyone has overcome it

u/Electrical_Court8649 — 2 months ago

Have improved so much but lingering face flushing

Anyone else suffer from this vasodilation flushing response?? It happens every single afternoon/evening no matter what I’m doing. It really hurts so much - like my face and often ears too are burning hot . Nothing helps it. If anyone had this , please tell me it has gone away with time ? My neurologist says it will, but it’s been a year and this symptom is really persistent and I just need some hope from this community that it too will stop… thanks so much everyone

u/Electrical_Court8649 — 2 months ago

One year later… a slow but very real recovery from post-viral dysautonomia

Hi everyone,
I wanted to post an update because when I was at my absolute worst, recovery posts were one of the only things that gave me hope.
I’m a 27-year-old female. I’ve had POTS since I was 12 and inflammatory bowel disease (microscopic colitis) for many years. My POTS itself has actually stayed pretty stable throughout this whole experience.
Back in June 2025, after a period of significant bowel inflammation, I caught Influenza B (and likely another viral illness around the same time). Almost overnight my autonomic nervous system seemed to completely malfunction. It was honestly the most traumatic thing I’ve ever experienced.

My symptoms were unlike anything I’d experienced with POTS.

At my worst I had:

Every single morning I’d wake up with an overwhelming physiological adrenaline surge. It wasn’t anxiety or panic psychologically - it felt like my brainstem was dumping adrenaline into my body. My stomach would suddenly flush with this horrible nervous energy, my brain would immediately start racing and looping thoughts, and I couldn’t get back to sleep despite being exhausted. This happened almost every morning for about 11 months.
Constant nausea and this indescribable “off” or sick feeling in my stomach from the moment I woke up until I went to bed. It felt neurological rather than gastrointestinal somehow, and often made it difficult to talk to people or function normally.
Intense burning, flushing ears and face that would happen every afternoon/evening and with showers, heat or exertion. My ears would become bright red, feel incredibly hot and actually hurt.
Random goosebumps and chills throughout the day.
Heat intolerance.
Uncontrollable crying outbursts
Head pressure and migraines with aura.
Tingling, numbness and temperature regulation issues.
Right eye twitching that has persisted.
Sleep disruption. Hypnic jerks over and over
And countless other strange autonomic symptoms that made me feel like my nervous system had completely broken.

I genuinely thought my life was over. And considered suicide many times.

Fast forward one year…

I’m absolutely not fully recovered, but I am honestly so much better.

Things that have either completely resolved or improved dramatically include:
The morning adrenaline dumps have gone from every single morning to only occasionally.
I no longer feel like my nervous system is stuck in constant fight-or-flight.
I can eat normally much of the time again.
I can swim, leave the house, shop, socialise and tolerate far more activity than I could before.
Overall, my body feels much calmer and more regulated than it did in those early months.

My main remaining symptoms are:
The persistent “off”/queasy stomach sensation (although I now have periods where it feels almost neutral, which never used to happen).
Flushing and burning of my face and ears every afternoon/evening - so hot and hurts bad (see pic attached of me today)
My right eye still twitches.
Occasional morning adrenaline surges.
Random goosebumps/chills episodes.

The hardest part has honestly been how slow recovery has been. Day-to-day it often feels like nothing is changing, and it’s easy to convince myself I’ve plateaued. But when I compare where I am now to even 3 or 6 months ago, the improvements are actually quite significant.

I’ve asked my neurologist countless times whether I should be worried that recovery is taking this long. Every appointment she tells me essentially the same thing: based on the trajectory so far, this is very clearly continuing to improve. She believes my brainstem and autonomic nervous system are still healing, and that time is the main treatment. She has repeatedly reassured me that she thinks it is very unlikely to simply stop improving given the steady trajectory over the past year.

I know everyone’s recovery is different, and I know not everyone has the same outcome. But if you’re in those terrifying early months where your nervous system feels completely broken, I just wanted to share that mine has improved enormously. It has just happened much, much slower than I ever imagined.

I still desperately want my old life back. I want to work again, feel comfortable in my own body again, and stop thinking about symptoms every day. But compared to where I started, there is absolutely no question that my nervous system has been healing.

I’d love to hear from anyone whose last remaining symptoms were flushing or that persistent “off” stomach feeling. Did they eventually resolve for you? Looking for encouragement to get through this (possibly?) final mile…

Thank you so much

u/Electrical_Court8649 — 2 months ago

Post viral dysautonomia severe - slowly improving 1 year on

Hi all. I am a 27 yo female . I’ve had POTS since 12 + inflammatory bowel disease (microscopic colitis). Back in June 2025 my bowels were really inflamed and I had a nasty influenza B … it caused the most horrific traumatic and disabling set of symptoms (ANS dysfunction)… that I am still slowly recovering from. My POTS symptoms have stayed the same all throughout, and these new dysautonomia symptoms are essentially improving bit by bit each month. It’s been a year now, and I am truly so much better than when this all started. I have fully gotten rid of many symptoms, with remaining symptoms including this (see picture) flushing to my ears and face every afternoon and night (just feels hot and hurts really bad, my right eye still twitching, having this sense of an off /queasy stomach but sometimes it’s more neutral now and I can eat normally again too, only sometimes getting the adrenaline dumps in the morning now as opposed to for 11 months having this horrible adrenaline sensation waking me every single morning , it felt almost like extreme nervousness flushing through my stomach and making my brain race and loop as soon as I was slightly awake and I could never get back to sleep despite having no “psychological” reaction it was like a purely physiological adrenaline response, also I am still getting some random goosebumps /chills episodes throughout the day.
My neurologist who has been with me on this whole journey says it’s clearly improving ..and it is … I am so much better but it’s just very slow so it’s very hard to be grateful when each day feels like no improvement and still suffering symptoms that really hurt or prevent me from functioning eg going back to work… until you look back across the months . I just want my life back and to not suffer these symptoms anymore. I fear it might stop improving … but my doc says that’s very very unlikely given the trajectory. She said it’s clearly just a time thing for my brainstem to heal and ANS to calm down… She thinks it might be worth trying a stellate ganglion block - anyone experienced improvement from this ? She says it may or may not help given the mixed findings, but thinks it’s worth a try.
Thank you so much for any input xx

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u/Electrical_Court8649 — 2 months ago

Flushing still but on a clear improvement trajectory

I am slowly getting better each month. It’s a year in now post influenza B + gut inflammation triggered severe dysautonomia, and I am so much better than when this all started. I have fully gotten rid of many symptoms, with remaining symptoms including this flushing to my ears and face every afternoon and night (just feels hot and hurts :(, my right eye still twitching, having this sense of an off /queasy stomach but sometimes it’s more neutral now and I can eat normally again too, only sometimes getting the adrenaline dumps in the morning now as opposed to for 11 months having this horrible adrenaline sensation waking me every morning , flushing through my stomach and making my brain race as soon as I was slightly awake and I could never get back to sleep, also still getting some random goosebumps /chills still.
My neurologist says it’s clearly improving ..and it is … I am so much better but it’s just very slow so hard to be grateful when each day feels like no improvement until you look back across the months . I just want my life back and to not suffer these symptoms anymore. I fear it might stop improving … but my doc says that’s very unlikely. She thinks it might be worth trying a stellate ganglion block - anyone experienced improvement from this ? She says it may or may not help but worth a try.
Thank you so much for any input xx

u/Electrical_Court8649 — 2 months ago

Using way more Dexamphetamine than prescribed to cope with prolonged illness... Feeling ashamed and don’t know if I’m being too hard on myself?

I’m really struggling and I don’t know who else to ask.

I’ve been dealing with a prolonged post-viral dysautonomia/autonomic nervous system dysfunction for almost a year now - it was the most awful traumatic experience ever - I had constant symptoms making it feel near impossible to live and just exist in my body. My neurologist is optimistic that I’ll recover fully and says the expected prognosis is that this is temporary and will continue to improve with time, and it has, but it’s just very slow… month by month I improve.

The problem is that emotionally, I feel like I’ve hit a wall. During the worst (first 9-10) months of the illness, I did not take any Dexamphetamine at all and was just focused on surviving. I was so unwell with near constant symptoms that I just wasn’t even thinking about anything other than getting through the next minute of suffering.

As my symptoms slowly started improving, I fell straight back into an old pattern (using Dex to cope with living with POTS and trying to keep up with ‘typical’ healthy people in studies and work life etc). And I started using dex to cope better emotionally lift my mood and distract better. Now I’m taking way more than prescribed. I’m not even counting anymore. I just keep reaching for another one, then another one and doing work on my laptop to keep my mind feeling like I’m doing something useful again

I feel a lot of shame about this.

The Dex is honestly the only thing that helps me feel okay enough to get through the day without the doom of not knowing how long it will be until I fully recover and can work again etc (which is such a large part of my identity and meaning in life). Dex distracts me from my autonomic symptoms, lifts my mood, makes time pass faster, and allows me to engage more in life rather than sitting there obsessing over how awful my body feels and being trapped in not knowing how long is left to suffer through.

I’ve tried multiple antidepressants and none of them have really done anything for me.

My doctor has said that if Dex helps me get through this temporary illness period, then using the 6 tablets I’m prescribed each day is okay.

But I can’t seem to stick to that limit.

Part of me also wonders if that’s bad advice from my doctor, despite her being clearly very intelligent, ethical and honest… or maybe I’m being way too hard on myself? She says it’s ok to take 6 to get through this and get back to some work… and she knows I have a tendency to overthink things so she was very reassuring. I asked my GP too and he said it’s fine…and that once I’m recovered we can work out the plan to wean

Another huge fear I have is: could taking too much Dex somehow prolong or worsen my dysautonomia recovery?

I know stimulants can increase heart rate, affect sleep, suppress appetite and put the body under more stress. At the same time, without it, I feel emotionally flat, low, overwhelmed, stuck, no motivation, and completely fixated on my symptoms/ the reality that I’m still not back to normal yet and we don’t know when that will be.

I don’t think I’m taking it to get “high” as much as I’m taking it to escape how hard this year has been and to make the hours pass easier while I wait for my nervous system to recover.

It also makes me feel like I can speak and be social again despite the symptoms and my job is largely speaking (psychologist) so I am also kind of using it as my safety blanket to convince myself that I’ll be able to get back to work soon as long as I have dex to help me.

Has anyone else found themselves relying on Dex or other stimulants to cope with something … like prolonged illness?

How did you break the cycle without feeling like you were taking away the one thing helping you survive each day?

Appreciate any honest help or advice . thank you so much

reddit.com
u/Electrical_Court8649 — 2 months ago

Using way more Dex than prescribed to cope with prolonged illness. Feeling ashamed and don’t know if I’m being too hard on myself

I’m really struggling and I don’t know who else to ask.

I’ve been dealing with a prolonged post-viral dysautonomia/autonomic nervous system dysfunction for almost a year now - it was the most awful traumatic experience ever - I had constant symptoms making it feel near impossible to live and just exist in my body. My neurologist is optimistic that I’ll recover fully and says the expected prognosis is that this is temporary and will continue to improve with time, and it has, but it’s just very slow… month by month I improve.

The problem is that emotionally, I feel like I’ve hit a wall. During the worst (first 9-10) months of the illness, I did not take any Dexamphetamine at all and was just focused on surviving. I was so unwell with near constant symptoms that I just wasn’t even thinking about anything other than getting through the next minute of suffering.

As my symptoms slowly started improving, I fell straight back into an old pattern (using Dex to do more despite having POTS). And I started using dex to cope better emotionally lift my mood and distract better. Now I’m taking way more than prescribed. I’m not even counting anymore. I just keep reaching for another one, then another one and doing work on my laptop to keep my mind feeling like I’m doing something useful again

I feel a lot of shame about this.

The Dex is honestly the only thing that helps me feel okay enough to get through the day without the doom of not knowing how long it will be until I fully recover and can work again etc (which is such a large part of my identity and meaning in life). Dex distracts me from my autonomic symptoms, lifts my mood, makes time pass faster, and allows me to engage more in life rather than sitting there obsessing over how awful my body feels and being trapped in not knowing how long is left to suffer through.

I’ve tried multiple antidepressants and none of them have really done anything for me.

My doctor has said that if Dex helps me get through this temporary illness period, then using the 6 tablets I’m prescribed each day is okay.

But I can’t seem to stick to that limit.

Part of me also wonders if that’s bad advice from my doctor, despite her being clearly very intelligent, ethical and honest… or maybe I’m being way too hard on myself? She says it’s ok to take 6 to get through this and get back to some work… and she knows I have a tendency to overthink things so she was very reassuring. I asked my GP too and he said it’s fine…and that once I’m recovered we can work out the plan to wean

Another huge fear I have is: could taking too much Dex somehow prolong or worsen my dysautonomia recovery?

I know stimulants can increase heart rate, affect sleep, suppress appetite and put the body under more stress. At the same time, without it, I feel emotionally flat, low, overwhelmed, stuck, no motivation, and completely fixated on my symptoms/ the reality that I’m still not back to normal yet and we don’t know when that will be.

I don’t think I’m taking it to get “high” as much as I’m taking it to escape how hard this year has been and to make the hours pass easier while I wait for my nervous system to recover.

It also makes me feel like I can speak and be social again despite the symptoms and my job is largely speaking (psychologist) so I am also kind of using it as my safety blanket to convince myself that I’ll be able to get back to work soon as long as I have dex to help me.

Has anyone else found themselves relying on Dex or other stimulants to cope with something … like prolonged illness?

How did you break the cycle without feeling like you were taking away the one thing helping you survive each day?

Appreciate any honest help or advice . thank you so much

reddit.com
u/Electrical_Court8649 — 2 months ago

Using way more Dex than prescribed to cope with prolonged illness. Feeling ashamed and don’t know if I’m being too hard on myself?

I’m really struggling and I don’t know who else to ask.

I’ve been dealing with a prolonged post-viral dysautonomia/autonomic nervous system dysfunction for almost a year now - it was the most awful traumatic experience ever - I had constant symptoms making it feel near impossible to live and just exist in my body. My neurologist is optimistic that I’ll recover fully and says the expected prognosis is that this is temporary and will continue to improve with time, and it has definitely gotten SO much better, but it’s just very slow… month by month I improve.

The problem is that emotionally, I feel like I’ve hit a wall. During the worst (first 9-10) months of the illness, I did not take any Dexamphetamine at all and was just focused on surviving. I was so unwell with near constant symptoms that I just wasn’t even thinking about anything other than getting through the next minute of suffering.

As my symptoms slowly started improving, I fell straight back into an old pattern. And I started using dex to cope better emotionally lift my mood and distract better. Now I’m taking way more than prescribed. I’m not even counting anymore. I just keep reaching for another one, then another one and doing work on my laptop to keep my mind feeling like I’m doing something useful again

I feel a lot of shame about this.

The Dex is honestly the only thing that helps me feel okay enough to get through the day without the doom of not knowing how long it will be until I fully recover and can work again etc (which is such a large part of my identity and meaning in life). Dex distracts me from my autonomic symptoms, lifts my mood, makes time pass faster, and allows me to engage more in life rather than sitting there obsessing over how awful my body feels and being trapped in not knowing how long is left to suffer through.

I’ve tried multiple antidepressants and none of them have really done anything for me.

My doctor has said that if Dex helps me get through this temporary illness period, then using the 6 tablets I’m prescribed each day is okay.

But I can’t seem to stick to that limit.

Part of me also wonders if that’s bad advice from my doctor, despite her being clearly very intelligent, ethical and honest… or maybe I’m being way too hard on myself? She says it’s ok to take 6 to get through this and get back to some work… and she knows I have a tendency to overthink things so she was very reassuring. I asked my GP too and he said it’s fine…and that once I’m recovered we can work out the plan to wean

Another huge fear I have is: could taking too much Dex somehow prolong or worsen my dysautonomia recovery?

I know stimulants can increase heart rate, affect sleep, suppress appetite and put the body under more stress. At the same time, without it, I feel emotionally flat, low, overwhelmed, stuck, no motivation, and completely fixated on my symptoms/ the reality that I’m still not back to normal yet and we don’t know when that will be.

I don’t think I’m taking it to get “high” as much as I’m taking it to escape how hard this year has been and to make the hours pass easier while I wait for my nervous system to recover.

It also makes me feel like I can speak and be social again despite the symptoms and my job is largely speaking (psychologist) so I am also kind of using it as my safety blanket to convince myself that I’ll be able to get back to work soon as long as I have dex to help me.

Has anyone else found themselves relying on Dex or other stimulants to cope with something … like prolonged illness?

How did you break the cycle without feeling like you were taking away the one thing helping you survive each day?

Appreciate any honest help or advice . thank you so much

reddit.com
u/Electrical_Court8649 — 2 months ago

Dex problem ?

Hi all,

I’m a 27 yo female.

I’ve developed a really unhealthy relationship with dexamphetamine and I’m honestly scared about where I’m at.

I was put on it at 15 for fatigue caused by POTS (chronic autonomic nervous system dysfunction condition). It helped massively to be upright for longer and less fatigued so rapidly, but over time I became more and more reliant on it to function, perform, push through stress/fatigue, and keep up with studies, life, then work. I’ve always had obsessive perfectionism and tied my self-worth to achievement, so I just kept pushing harder and harder, ignoring sleep, stress, burnout, and my body. To perform.

I became very successful in my career young, but now I look back and feel like I destroyed myself trying to prove I wasn’t weak or limited by the POTS illness which struck me at 12 years old and took away my real passion - competitive swimming.

Without dex, I feel flat, emotionally shut down, withdrawn, low, and honestly like hiding from the world. I lose interest in people and barely want to talk, even to my partner. No motivation, no spark, no joy. But when I take dex, I suddenly feel social, capable, motivated, engaged, and like “myself” again.

What makes this harder is I got severely sick after a flu virus last year on top of chronic inflammatory bowel disease and years of stress/pushing. My neurologist believes it was the virus and maybe the autoimmune bowel activity (microscopic colitis) that triggered a major post-viral autonomic nervous system dysfunction. I’ve spent nearly a year in horrible fight-or-flight symptoms and have only slowly started recovering from 20+ traumatic daily symptoms over the past 11 months. I cried hysterically every day during this.. and almost every day felt depressed, low, trapped, fixated on being trapped in symptoms that tormented me. My doc said all along i will recover...and Month by month I am. Still not normal but getting closer.

Now that I’m functional enough to do more again, I’ve found myself straight back to relying on dex to feel productive, social, and mentally okay. It also helps me cope with the remaining physical symptoms because otherwise I obsess over them constantly all day.

My doctors say this isn’t all caused by dex and that taking it as prescribed is okay, but I can’t stop worrying I’ve fried my brain or nervous system somehow.

Has anyone recovered from long-term stimulant dependence/reliance and gotten their personality, motivation, emotions, and natural joy back? How long did it take? What actually helped?

I stopped dex once before in late 2024 and after a couple of weeks I felt calmer and happier than I had in years, which gives me hope. But this time feels different because my nervous system is still recovering from everything else too so I jumped back to it to not feel so depressed and useless.

Would really appreciate honest experiences or advice. Thanks so so much.

reddit.com
u/Electrical_Court8649 — 3 months ago

Dex problem?

Hi all,

I’m a 27 yo female.

I’ve developed a really unhealthy relationship with dexamphetamine and I’m honestly scared about where I’m at.

I was put on it at 15 for fatigue caused by POTS (chronic autonomic nervous system dysfunction condition). It helped massively to be upright for longer and less fatigued so rapidly, but over time I became more and more reliant on it to function, perform, push through stress/fatigue, and keep up with studies, life, then work. I’ve always had obsessive perfectionism and tied my self-worth to achievement, so I just kept pushing harder and harder, ignoring sleep, stress, burnout, and my body. To perform.

I became very successful in my career young, but now I look back and feel like I destroyed myself trying to prove I wasn’t weak or limited by the POTS illness which struck me at 12 years old and took away my real passion - competitive swimming.

Without dex, I feel flat, emotionally shut down, withdrawn, low, and honestly like hiding from the world. I lose interest in people and barely want to talk, even to my partner. No motivation, no spark, no joy. But when I take dex, I suddenly feel social, capable, motivated, engaged, and like “myself” again.

What makes this harder is I got severely sick after a flu virus last year on top of chronic inflammatory bowel disease and years of stress/pushing. My neurologist believes it was the virus and maybe the autoimmune bowel activity (microscopic colitis) that triggered a major post-viral autonomic nervous system dysfunction. I’ve spent nearly a year in horrible fight-or-flight symptoms and have only slowly started recovering from 20+ traumatic daily symptoms over the past 11 months. I cried hysterically every day during this.. and almost every day felt depressed, low, trapped, fixated on being trapped in symptoms that tormented me. My doc said all along i will recover...and Month by month I am. Still not normal but getting closer.

Now that I’m functional enough to do more again, I’ve found myself straight back to relying on dex to feel productive, social, and mentally okay. It also helps me cope with the remaining physical symptoms because otherwise I obsess over them constantly all day.

My doctors say this isn’t all caused by dex and that taking it as prescribed is okay, but I can’t stop worrying I’ve fried my brain or nervous system somehow.

Has anyone recovered from long-term stimulant dependence/reliance and gotten their personality, motivation, emotions, and natural joy back? How long did it take? What actually helped?

I stopped dex once before in late 2024 and after a couple of weeks I felt calmer and happier than I had in years, which gives me hope. But this time feels different because my nervous system is still recovering from everything else too so I jumped back to it to not feel so depressed and useless.

Would really appreciate honest experiences or advice. Thanks so so much.

reddit.com
u/Electrical_Court8649 — 3 months ago

Dex problem?

Hi all,

I’ve developed a really unhealthy relationship with dexamphetamine and I’m honestly scared about where I’m at.

I was put on it at 15 for fatigue caused by POTS (chronic autonomic nervous system dysfunction condition). It helped massively to be upright for longer and less fatigued so rapidly, but over time I became more and more reliant on it to function, perform, push through stress/fatigue, and keep up with studies, life, then work. I’ve always had obsessive perfectionism and tied my self-worth to achievement, so I just kept pushing harder and harder, ignoring sleep, stress, burnout, and my body. To perform.

I became very successful in my career young, but now I look back and feel like I destroyed myself trying to prove I wasn’t weak or limited by the POTS illness which struck me at 12 years old and took away my real passion - competitive swimming.

Without dex, I feel flat, emotionally shut down, withdrawn, low, and honestly like hiding from the world. I lose interest in people and barely want to talk, even to my partner. No motivation, no spark, no joy. But when I take dex, I suddenly feel social, capable, motivated, engaged, and like “myself” again.

What makes this harder is I got severely sick after a flu virus last year on top of chronic inflammatory bowel disease and years of stress/pushing. My neurologist believes it was the virus and maybe the autoimmune bowel activity (microscopic colitis) that triggered a major post-viral autonomic nervous system dysfunction. I’ve spent nearly a year in horrible fight-or-flight symptoms and have only slowly started recovering from 20+ traumatic daily symptoms over the past 11 months. I cried hysterically every day during this.. and almost every day felt depressed, low, trapped, fixated on being trapped in symptoms that tormented me. My doc said all along i will recover...and Month by month I am. Still not normal but getting closer.

Now that I’m functional enough to do more again, I’ve found myself straight back to relying on dex to feel productive, social, and mentally okay. It also helps me cope with the remaining physical symptoms because otherwise I obsess over them constantly all day.

My doctors say this isn’t all caused by dex and that taking it as prescribed is okay, but I can’t stop worrying I’ve fried my brain or nervous system somehow.

Has anyone recovered from long-term stimulant dependence/reliance and gotten their personality, motivation, emotions, and natural joy back? How long did it take? What actually helped?

I stopped dex once before in late 2024 and after a couple of weeks I felt calmer and happier than I had in years, which gives me hope. But this time feels different because my nervous system is still recovering from everything else too so I jumped back to it to not feel so depressed and useless.

Would really appreciate honest experiences or advice. Thanks so so much.

reddit.com
u/Electrical_Court8649 — 3 months ago

Dex problem?

Hi all,

I’ve developed a really unhealthy relationship with dexamphetamine and I’m honestly scared about where I’m at.

I was put on it at 15 for fatigue caused by POTS (chronic autonomic nervous system dysfunction condition). It helped massively to be upright for longer and less fatigued so rapidly, but over time I became more and more reliant on it to function, perform, push through stress/fatigue, and keep up with studies, life, then work. I’ve always had obsessive perfectionism and tied my self-worth to achievement, so I just kept pushing harder and harder, ignoring sleep, stress, burnout, and my body. To perform.

I became very successful in my career young, but now I look back and feel like I destroyed myself trying to prove I wasn’t weak or limited by the POTS illness which struck me at 12 years old and took away my real passion - competitive swimming.

Without dex, I feel flat, emotionally shut down, withdrawn, low, and honestly like hiding from the world. I lose interest in people and barely want to talk, even to my partner. No motivation, no spark, no joy. But when I take dex, I suddenly feel social, capable, motivated, engaged, and like “myself” again.

What makes this harder is I got severely sick after a flu virus last year on top of chronic inflammatory bowel disease and years of stress/pushing. My neurologist believes it was the virus and maybe the autoimmune bowel activity (microscopic colitis) that triggered a major post-viral autonomic nervous system dysfunction. I’ve spent nearly a year in horrible fight-or-flight symptoms and have only slowly started recovering from 20+ traumatic daily symptoms over the past 11 months. I cried hysterically every day during this.. and almost every day felt depressed, low, trapped, fixated on being trapped in symptoms that tormented me. My doc said all along i will recover...and Month by month I am. Still not normal but getting closer.

Now that I’m functional enough to do more again, I’ve found myself straight back to relying on dex to feel productive, social, and mentally okay. It also helps me cope with the remaining physical symptoms because otherwise I obsess over them constantly all day.

My doctors say this isn’t all caused by dex and that taking it as prescribed is okay, but I can’t stop worrying I’ve fried my brain or nervous system somehow.

Has anyone recovered from long-term stimulant dependence/reliance and gotten their personality, motivation, emotions, and natural joy back? How long did it take? What actually helped?

I stopped dex once before in late 2024 and after a couple of weeks I felt calmer and happier than I had in years, which gives me hope. But this time feels different because my nervous system is still recovering from everything else too so I jumped back to it to not feel so depressed and useless.

Would really appreciate honest experiences or advice. Thanks so so much.

reddit.com
u/Electrical_Court8649 — 3 months ago

1 year post influenza symptoms persist but slowly improving each month

Hey everyone,

I’ve had dysautonomia post influenza for nearly a year now. I had POTS beforehand for 15 years but these are different symptoms. At the start my symptoms were really really bad and have definitely (very slowly) improved . The major adrenaline surges have stopped (they finally stopped in March - about 8 months after starting). Some symptoms still persist. My neurologist says it will continue to fade and eventually go away.

Here’s what persists:

Flushing hot cheeks face ears every afternoon and evening (see photo of flushed cheeks) . It’s not MCAS as we went down this route to no avail .

This early morning adrenaline waking thing flushing through my stomach and feels like it’s tormenting me, waking me up and unable to properly get back to sleep

A sensation of nausea /off stomach that occurs when the morning thing above is worse…which makes my mood low , hard to tolerate doing anything (doesn’t act like normal gut nausea or respond to anti nausea meds)

A brief prickling electric shock sensation in my face /shoots up the side of my temples area

Right lower eyelid twitching

Sometimes hypnic jerks at night when falling asleep

Recently I had some mornings where that adrenaline sensation flushing through me didn’t happen… I had not had several days in a row that were better until then. I thought it had maybe gone away… then this morning was back. It broke me. Psychologically…. I am a psychologist myself but am truly struggling to get through this not knowing if/when it ends. Do you think the fact I had some better mornings means it’s starting to peter out , like the daily surges did ? The surges persisted for months , slowly reducing in intensity before eventually stopping on March 11th. I never thought I’d escape them… I’m trying to remember that I’ve come so far but it feels like I am still so far from normal and getting my life and work back…

I am so much better but still so uncomfortable in my body if that makes sense. Each month things improve a tiny bit but it’s almost like when I get a tiny bit closer and then go ‘backwards’ I lose all hope and feel trapped … start thinking how do I make it through this until it ends… and I trust my neurologist but start asking myself what if she is just guessing/hoping and I never get my old self back…

Looking for hope to keep going and get my life back.

Thank you everyone xx

u/Electrical_Court8649 — 3 months ago
▲ 4 r/POTS

Could POTS pathophysiology involve autoimmunity ?

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?

reddit.com
u/Electrical_Court8649 — 3 months ago

POTS and IBD?

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?

reddit.com
u/Electrical_Court8649 — 3 months ago

Dexamphetamine cause dysautonomia ?

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 ?

reddit.com
u/Electrical_Court8649 — 3 months ago
▲ 6 r/POTS

Post viral dysautonomia different from usual POTS?

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

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u/Electrical_Court8649 — 3 months ago