Long COVID
Moderate → somewhat betterIll 3 years before improving or writingNeeds ongoing treatment
Long COVID head and neck pain, slowly improving with brain retraining and psilocybin
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 3 years
- Last post
- Dec 2025
In their words
- At worst: Moderate
I’m still insanely low with this…can’t exercise…any every MINUTE of every day I have had terrible pain in my head 24/7 for 8 months.
In context ↗ - Now: Somewhat better
I’ve seemed to gotten a tiny bit better with time and pacing, but still constant pain in forehead/eyes/bridge of nose/facial pressure
In context ↗ - Began after: COVID
Third (omicron) gave me LC.
Read from 58 of their posts and comments; links to the 32 this page draws on
Summary
After a third COVID infection in April 2022, they developed constant 24/7 head pressure, neck creaking and muscle pain, later with tinnitus and EBV reactivation; a fourth infection made things worse. Many headache drugs failed; IV methylprednisolone gave a few months of relief and Botox helped their neck. Brain retraining and psilocybin brought some relief from 2024, and by mid-2025 they were still suffering but slowly improving.
Ask Miruvor AI
What they tried
What they credit
Also tried
dexamethasone (dex)· Helped a lotIV methylprednisolone· Helped · wore offBotox· HelpedCefaly device· Helpedhot showers· Helpedpristiq (desvenlafaxine)· Helped · wore offZyrtec· HelpedPRP injections· Helpednortryptiline· No changecymbalta· No changegabapentin· No changequlipta (CGRP antagonist)· No changesupplements· No changeIV lidocaine infusion· No changePT (neck exercises, chin tucks)· No changeverapamil· No changehydroxychloroquine· WorsePepcid· Not saidnerve blocks with steroids· Not saidpsilocybin (shrooms)· Not said
Their words about each treatment
- nortryptiline · No change
Nortryptiline is what I was first put on too. Don't waste your time on it.
In context ↗ - dexamethasone (dex) · Helped a lot
when I was early on and had dex it helped that ALOT
In context ↗ - IV methylprednisolone · Helped
It helped for a month or two with the headache for me ... pain came right back to how it was awhile after.
In context ↗ - cymbalta · No change
that did pretty much nothing for me other than increase my mood a bit
In context ↗ - gabapentin · No change
Have done many meds already (on qulipta, done cymbalta, gotten Botox, done nortryptiline, tried gabapentin). Nothing helps.
In context ↗ - Botox · Helped
See my posts about high IV methylprednisolone, that combined with Botox helped my neck a lot.
In context ↗ - qulipta (CGRP antagonist) · No change
Migraine meds don’t help the head pressure at all. I’m on qulipta just for the hell of it.
In context ↗ - Cefaly device · Helped
It’s expensive, but does help a bit too
In context ↗ - hot showers · Helped
Heat (hot showers in particular, focusing the water on my forehead) help a bit too
In context ↗ - pristiq (desvenlafaxine) · Helped
Just started a new med 2 weeks ago (desvenlaflaxine) , and actually had a couple of days where I was starting to feel a little bit better
In context ↗ - Zyrtec · Helped
Started taking Zyrtec and Pepcid and Zyrtec seems like it’s helping a bit…but not too much.
In context ↗ - Pepcid · Not said
Started taking Zyrtec and Pepcid
In context ↗ - supplements · No change
Was on lots of supplements earlier but none of them helped so I stopped
In context ↗ - cold showers · Helped
I do them pretty religiously now, and they 100% do help
In context ↗ - IV lidocaine infusion · No change
Finishing up a lidocaine infusion right now….no relief
In context ↗ - nerve blocks with steroids · Not said
I’ve tried pretty much everything….IV lidocaine, nerve blocks with steroids, steroid IV, Botox, several snris, nortryptiline
In context ↗ - valacyclovir · Helped
Got it down to undetectable levels. Got rid of most of my fatigue and def helped some other symptoms
In context ↗ - somatic tracking · Helped
Only thing that has helped at all has been somatic tracking and high iv methylprednisolone
In context ↗ - PT (neck exercises, chin tucks) · No change
I did pt for many months, including exercises you have discussed (chin tucks, etc) and I’m glad they helped you, but they did not help me
In context ↗ - PRP injections · Helped
I got prp done by them. Did it help my neck pain? Maybe a bit for a few months…but its hard to really know.
In context ↗ - psilocybin (shrooms) · Not said
Brain retraining (and psilocybin) has helped me in the last few months ... I did two small doses…didn’t really seem to help me
- brain retraining · Helped
Brain retraining (and psilocybin) has helped me in the last few months than any amount of western medicine has.
In context ↗ - pacing · Helped
I’ve seemed to gotten a tiny bit better with time and pacing
In context ↗ - pushing through and doing things despite symptoms · Helped
I feel better when I avoid my routine and push through actually doing shit/getting stuff done.
In context ↗ - time · Helped
think time is ultimately what is helping most tho
In context ↗ - verapamil · No change
Verapamil and CCBs are standard treatment. But, usually not worth the effort (atleast in my experience)
In context ↗ - hydroxychloroquine · Worse
I reallly wanna try it, but had some pretty intense and miserable nausea/gerd from it so stopped just after 2 days.
In context ↗
Approaches: Alternative therapies · Antivirals · Brain retraining · Exercise and activity · Pacing
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, with time counted from when the illness began. Hover or tap a point. The chart starts 8 months after onset: the story doesn’t say how ill they were before that. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2022-12-18 | Lowest point with constant head pain and inability to exerciseI’m still insanely low with this…can’t exercise…any every MINUTE of every day I have had terrible pain in my head 24/7 for 8 months.In context ↗ | Moderate | |
| 2022-12-24 | Neck pain improved and head pain partially relievedHigh Iv methylpred. That gave me some relief for a few months and helped my neck out a lot.In context ↗ | Moderate | Corticosteroid pulses |
| 2023-01-02 | Relapsed after brief improvement on desvenlafaxineI seemingly randomly relapsed within a day, and now feel like I’m at month one again with 7/10 painIn context ↗ | Moderate | |
| 2023-01-24 | Pain slightly reduced with antihistamines, time and BotoxPain has definitely dwindled a bit (although still there 24/7). Antihistamines seemed to help a bit; think time is ultimately what is helping most tho. Botox seems to be helping a bit tooIn context ↗ | Moderate | Cetirizine (Zyrtec) |
| 2023-06-28 | Slow gradual improvementAt 14 months. Definitely super slowly getting a bit better, just sucks.In context ↗ | Moderate | Time and spontaneous remission |
| 2024-01-18 | Relief from brain retraining and psilocybinBrain retraining (and psilocybin) has helped me in the last few months than any amount of western medicine has.In context ↗ | Mild | |
| 2024-03-13 | Hours of feeling okay and able to do activitiesStill have days where I’m in tons of pain. But also have hours where I feel okay.In context ↗ | Mild | |
| 2025-06-15 | Still symptomatic but brain retraining helpedStill suffering. ... it has helped me and tons of other people I’ve talked to.In context ↗ | Mild |
Adverse events
- Corticosteroid pulses“My first dose made my symptoms much worse. It wasn’t until about 2 months after my second dose that I got any benefit at all from it.” In context ↗ Made symptoms worse
- Hydroxychloroquine / Plaquenil“I reallly wanna try it, but had some pretty intense and miserable nausea/gerd from it so stopped just after 2 days.” In context ↗ Gut side effects
Symptoms mentioned
Anxiety & low moodFlu-like symptomsHeadaches & migrainePain & fibromyalgiaPost-exertional malaiseTinnitus
Their words about their symptoms
- Headaches & migraine
a 24/7 pressure/pain in my head every second of every day since. It’s a constant headache, that never goes away.
In context ↗ - Pain & fibromyalgia
Neck pain/cracking has gotten a bit better, but still occasionally there.
In context ↗ - Post-exertional malaise
Have been doing fairly decent until I overdid it yesterday and am back on my ass again in intense pain.
In context ↗ - Tinnitus
Tinnitus still there…but have learned to live with it.
In context ↗ - Anxiety & low mood
Saved me from suicide in regards to the constant head pain.
In context ↗ - Flu-like symptoms
helped with fatigue and random rashes/sore throat I was getting
In context ↗
Ask Miruvor AI
Similar stories
-
Bedridden for a year with ME/CFS, now much better though still crashing
She fell ill with long COVID in 2020; she spent her first year bedridden, able to walk only 300 steps to the toilet, and in her second year could leave the house only with a wheelchair. A pregnancy brought a remission until a COVID reinfection; treatments…
-
Long COVID insomnia and adrenaline surges, much better at about 80% after pacing
Infected in March 2020, he developed mild long COVID dominated by two years of severe insomnia and night-time adrenaline surges, while working full time from home. From 2023 he paced strictly, did daily nervous-system work (yin yoga, breathing, meditation,…
-
Long COVID brain fog and fatigue, now back to normal after brain training and cold showers
A 46-year-old man got long COVID in January 2022, with severe anxiety, brain fog, insomnia, DPDR and fatigue that left him unable to do real work for months. After about 10 months of unsuccessful drug trials he built his own routine of brain training, cold…
-
Moderate ME/CFS for two years, now mild and working after pacing and stress management
Stream 11635 developed CFS overnight as he was beginning university and had been ill almost three years by July 2022. He was moderate for two years, set back by a flu-like illness in March 2020. He improved about 30%, crediting stress management, pacing, a…