Long COVID
Mild → much betterIll 3 years before improving or writing
Long COVID with POTS and brainstem migraine, much better with time and breathwork
- Condition
- Long COVID
- At worst
- Mild (working or studying, with limits)
- Ill before improving or writing
- 3 years
- Last post
- May 2026
In their words
- Condition: Long COVID
I have pots and chronic brainstem migraine, both likely caused by nervous system dysfunction post 4 concurrent bouts of covid
In context ↗ - At worst: Mild
I am also recovering but reinfection often set me back a lot. Running atm is a dream!
In context ↗ - Now: Much better
After 2 years I’m about 80%+ recovered but was never bed bound.
In context ↗ - Began after: COVID
My pots has come from covid directly (no experience at all before)
In context ↗
Read from 14 of their posts and comments; links to the 8 this page draws on
Summary
They caught COVID four times in 18 months and have POTS, chronic brainstem migraine and gut problems, never bed-bound. After two years they put themselves at about 80% recovered, crediting propranolol, midodrine, sumatriptan, lactoferrin, breathwork, a career break and time. Amitriptyline, acupuncture, NAC and heat made them worse, and reinfections often set them back.
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What they tried
What they credit
sumatriptan· Helped a lotstopping work· Helped a lotbeta blockers· Helped · mainbreathwork· Helpedyoga nidra· Helpedmidodrine· Helped · mainlacctoferrin supplement· Helpedprioritising sleep· Helpedtime· Helpednot having periods (continuous pill use)· HelpedChat gpt· Helpedmagnesium· Helpedb1· Helpedcoq10· Helpedjournaling· Helped
Also tried
Diazepam· Helpedvitamins b2· Helpedtherapy· Helpedprotein heavy diet· Helpedcinnarizine· Helpedmild exercise· Helpedaspirin· Helpedmassage and reflexology· Helpedradical rest· HelpedCovid vaccine· No changeantihistamines· No changediet changes beyond more protein· No changethe way out· No changetuarine· No changecreatine· No changeAccupuncture and reflexology· Worsenac· Worseppq· Worsesauna· Worseamtripyline· Much worse
Their words about each treatment
- beta blockers · Helped
I’m on beta blockers for pots which helps quite well
In context ↗ - Diazepam · Helped
Diazepam did work, only 1mg.
In context ↗ - sumatriptan · Helped a lot
When I take sumatriptan I often feel wonderfully normal.
In context ↗ - amtripyline · Much worse
amitriptyline made all my symptoms worse and I had to ween off it for weeks, horrific
In context ↗ - breathwork · Helped
Inter-nasal breathing is also really helpful if my nervous system is feeling migraine-y, but 4-7 is good for when my heart is racing due to POTS.
In context ↗ - yoga nidra · Helped
yoga nidra, breathwork and therapy and journaling all helped hugely
In context ↗ - Covid vaccine · No change
Covid vaccine - this didn’t make me better but I’ve not caught covid since I had a booster novavax vaccine a couple of years ago
In context ↗ - midodrine · Helped
midodrine help pots a lot and means I can stand up for much longer
In context ↗ - lacctoferrin supplement · Helped
lacctoferrin supplement helps with all gut health issues
In context ↗ - prioritising sleep · Helped
prioritising sleep
In context ↗ - stopping work · Helped a lot
stopping work (I had a very high pressure job and taking a career break has helped hugely)
In context ↗ - not having periods (continuous pill use) · Helped
not having periods (continuous pill use)
In context ↗ - Chat gpt · Helped
using it really helped me understand what was underlying with my symptoms and what can do about it in real time
In context ↗ - vitamins b2 · Helped
vitamins b2, magnesium, b1, coq10; all helped somewhat but didn’t move the needle hugely
In context ↗ - therapy · Helped
therapy, I had a lot of cbt and while it doesn’t make you better it def helped me to stop panicking and spiralling over symptoms
In context ↗ - protein heavy diet · Helped
protein heavy diet
In context ↗ - cinnarizine · Helped
cinnarizine - maybe helped with some of the dizziness but effects were mild
In context ↗ - mild exercise · Helped
mild exercise sometimes helps eg swimming, walking, but I have to be cautious
In context ↗ - aspirin · Helped
aspirin - sometimes helped with pain/mirgaines
In context ↗ - massage and reflexology · Helped
massage and reflexology def soothes the nervous system but effects short
In context ↗ - antihistamines · No change
antihistamines - tried loads none made any difference
In context ↗ - diet changes beyond more protein · No change
diet changes beyond more protein
In context ↗ - the way out · No change
mind/body work eg “the way out” - just made me blame myself
In context ↗ - tuarine · No change
tuarine - did nothing
In context ↗ - creatine · No change
creatine - did nothing
In context ↗ - Accupuncture and reflexology · Worse
Accupuncture and reflexology, made me flare much worse for a few days after
In context ↗ - nac · Worse
nac, ppq made me crash
In context ↗ - sauna · Worse
heat - heat waves are awful, hot baths, sauna used to be awful but I can tolerate again now
In context ↗ - radical rest · Helped
Interrupting it with radical rest is the only thing that seems to help this
In context ↗
Approaches: CBT & mindset · POTS medication · Beta-blockers · Mind-body practices · Other drugs and medicines · Radical rest · Sex hormones · Supplements
Their path
What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened |
|---|---|
| 2023 | POTS and chronic brainstem migraine after COVIDMy pots has come from covid directly (no experience at all before)In context ↗ |
| 2023-2024 | covid reinfections, each causing a relapseI personally get a relapse every time I get covidIn context ↗ |
| 2024-11-06 | slowly recovering but reinfections set her back; unable to runI am also recovering but reinfection often set me back a lot. Running atm is a dream!In context ↗ |
| 2026-05-18 | about 80% recovered on a career break, still flaresAfter 2 years I’m about 80%+ recovered but was never bed bound.In context ↗ |
Adverse events
- Amitriptyline (Elavil)“amtripyline which made everything much much worse” In context ↗ Made symptoms worse
- Amitriptyline (Elavil)“amitriptyline made all my symptoms worse and I had to ween off it for weeks, horrific” In context ↗ Withdrawal problems
- Sarno / TMS / somatic tracking / JournalSpeak“mind/body work eg “the way out” - just made me blame myself” In context ↗ Mood or psychiatric effects
- Sarno / TMS / somatic tracking / JournalSpeak“I found it placed too much emphasis on me, and that I can just fix it by thinking differently” In context ↗ Mood or psychiatric effects
- “Accupuncture and reflexology, made me flare much worse for a few days after” In context ↗ Made symptoms worse
- “Accupuncture and reflexology, made me flare much worse for a few days after” In context ↗ Made symptoms worse
- NAC (N-acetylcysteine)“nac, ppq made me crash” In context ↗ Made symptoms worse
- NAC (N-acetylcysteine), PQQ (pyrroloquinoline quinone)“nac, ppq made me crash” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodGut problemsHeadaches & migraineLight & noise sensitivityPOTS & dysautonomiaSleep problemsTemperature regulation
Their words about their symptoms
- POTS & dysautonomia
I have pots and chronic brainstem migraine
In context ↗ - Headaches & migraine
chronic brainstem migraine
In context ↗ - Sleep problems
even with great sleep hygiene I get it too, I feel like I’ve melted into the bed when I wake up
In context ↗ - Gut problems
lacctoferrin supplement helps with all gut health issues
In context ↗ - Anxiety & low mood
I also get these migraine X panic attack events where I’m not stressed or upset but my brain is going nuts
In context ↗ - Light & noise sensitivity
calmed hyper sensitivity a lot
In context ↗ - Temperature regulation
heat waves are awful, hot baths, sauna used to be awful but I can tolerate again now
In context ↗
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