Long COVID
Severe → near normalIll 5 months before improving or writingNeeds ongoing treatment
Long COVID with nausea, brain fog and PEM, nearly back to normal after booster and pacing
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 5 months
- Last post
- Aug 2025
In their words
- Condition: Long COVID
I had chronic illnesses before getting long COVID, and it made them worse in addition to new symptoms.
In context ↗ - At worst: Severe
30 minutes of energy a day ... for the first 6 months of this I only had half an hour before it got too bad to function
- Now: Near normal
I tagged "almost recovered" instead of "recovered" because of how murky it is with me already having partially-untreated MCAS, migraines, and POTS before COVID.
In context ↗ - Began after: COVID
after a mild COVID infection 2 years ago
Read from 110 of their posts and comments; links to the 49 this page draws on
- Apr 2025
- Oct 2022
- Aug 2022
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- Dec 2022
Summary
Alpine 74920, who already had POTS and MCAS from her teens, got long COVID after a mild infection in 2022 with constant nausea, brain fog and PEM, down to about 30 minutes before symptoms made functioning impossible. A Moderna bivalent booster in late 2022 removed half her symptoms within days; migraine drugs, a liquid diet and pacing added more, though reinfections set her back. By 2024 she was back to part-time work and hobbies, still on medication and managing remaining symptoms.
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What they tried
What they credit
Emeterm electric pulse bracelet· Helped a lotCholestyramine· Helped a lotBirth control pills· Helped a lotCompression tights· Helped a lotBupropion· Helped a lotVenlafaxine· Helped a lotDuloxetine· Helped a lotEmgality· Helped a lot · mainPacing and accommodations· Helped a lotCOVID booster vaccination· Helped a lot · mainOral ketotifen· Helped a lotFish oil· HelpedAloe vera· HelpedNAC· HelpedNuva ring· HelpedWalking/graded exercise for POTS· HelpedElectrolyte mix· HelpedFludrocortisone· HelpedGuanfacine· HelpedMelatonin· HelpedPaxlovid· HelpedErythromycin/antibiotics for gastroparesis· HelpedAcarbose· HelpedNurtec· HelpedVerapamil· HelpedPrism glasses· HelpedFL-41 tinted glasses· HelpedCholine· HelpedFiber· HelpedCromolyn sodium· Helped
Also tried
Rice and fish diet· HelpedGinger chews· HelpedZyrtec· HelpedBoost high protein shakes· HelpedLight lamp· HelpedLiquid B12· HelpedAspirin· HelpedPhosphatidylcholine· HelpedDoxepin· HelpedBenzodiazepine· HelpedAmantadine· HelpedZofran· HelpedPepcid· HelpedPPI· HelpedAmitriptyline· HelpedTalk therapy· HelpedNaturdao DAO enzymes· HelpedQuercetin· HelpedMagnesium oxide· HelpedSublingual multivitamin· HelpedVitamin D+K· HelpedSound-reducing earplugs· HelpedAllegra· No changeSSRIs (several)· No changeBeta blockers· No changeReglan· No changeAntipsychotics· WorseStimulants (unspecified)· WorseCoQ10· Not saidRamelteon· Not saidPetadolex· Not saidPhysical therapy· Not saidB2· Not saidBarimelts with iron· Not saidTurmeric / curcumin· Not said
Their words about each treatment
- Emeterm electric pulse bracelet · Helped a lot
The Emeterm bracelet thing helped the most.
In context ↗ - Rice and fish diet · Helped
I mostly eat rice and fish now also since that’s what I tolerate best.
In context ↗ - Ginger chews · Helped
Though ginger chews are also helpful.
In context ↗ - Allegra · No change
Allegra doesn’t work for me either.
In context ↗ - Zyrtec · Helped
though personally zyrtec works better for me
In context ↗ - Boost high protein shakes · Helped
Drinking my calories. Boost high protein shakes, six a day.
In context ↗ - Fish oil · Helped
fish oil and phosphatidylcholine have helped
In context ↗ - Aloe vera · Helped
Other supplements that helped me: fish oil, aloe Vera, ginger chews
In context ↗ - Cholestyramine · Helped a lot
they gave me cholestyramine because they thought the constant bile flow was worsening symptoms. It was. Helped a ton.
In context ↗ - NAC · Helped
taking guanfacine and NAC
In context ↗ - Birth control pills · Helped a lot
Within one month of being on birth control I went from being suicidal 2 weeks every month to perfectly fine all month
In context ↗ - Nuva ring · Helped
The nuva ring worked well for me too
In context ↗ - SSRIs (several) · No change
some people benefit from SSRIs but I never did
In context ↗ - Walking/graded exercise for POTS · Helped
Slowly building up stamina by walking helped in the beginning for POTS.
In context ↗ - Electrolyte mix · Helped
pedialyte and liquid IV work better for me
In context ↗ - Compression tights · Helped a lot
Compression tights are 90% of how I cope though.
In context ↗ - Beta blockers · No change
Beta blockers didn’t work for me
In context ↗ - Fludrocortisone · Helped
I take fludrocortisone to help the POTS also
In context ↗ - Light lamp · Helped
I use a light lamp for circadian rhythm
In context ↗ - Liquid B12 · Helped
I take sublingual b12 because I don’t process it well.
In context ↗ - Aspirin · Helped
I’m also on 300mg of aspirin for the MCAS
In context ↗ - Guanfacine · Helped
Guanfacine for brain fog (half dose so blood pressure doesn’t get too low)
In context ↗ - Melatonin · Helped
Taking melatonin earlier than most people take it seemed to help a bit
In context ↗ - Doxepin · Helped
6mg doxepin was reallllly helpful
In context ↗ - Ramelteon · Not said
Now I take ramelteon.
In context ↗ - Benzodiazepine · Helped
at low doses, once a week, they can help interrupt the MCAS spiral
In context ↗ - Amantadine · Helped
It helps but also crashes me but at least if I NEED to focus I have it.
In context ↗ - Paxlovid · Helped
Each got me 25% recovered for nausea.
In context ↗ - Erythromycin/antibiotics for gastroparesis · Helped
While I'm taking the erythromycin, my symptoms are 90% gone!
In context ↗ - Reglan · No change
I tried reglan for motility and it didn't help nearly as much.
In context ↗ - Zofran · Helped
zofran for the nausea
In context ↗ - Pepcid · Helped
Pepcid 20mg twice a day.
In context ↗ - PPI · Helped
I ended up on a ppi and it helped a tiny bit.
In context ↗ - Acarbose · Helped
acarbose (25 mg per 250 calories)
In context ↗ - Bupropion · Helped a lot
bupropion (only 100mg)
In context ↗ - Venlafaxine · Helped a lot
Venlafaxine low dose helped.
In context ↗ - Duloxetine · Helped a lot
I am doing fantastic on duloxetine. No more migraines after eating, no more POTS.
In context ↗ - Emgality · Helped a lot
Emgality is most effective for migraines
In context ↗ - Nurtec · Helped
Definitely nurtec helped.
In context ↗ - Verapamil · Helped
Verapamil also hugely helped sleep
In context ↗ - Petadolex · Not said
I should NOT be taking petadolex as it's dangerous but I still am
In context ↗ - Amitriptyline · Helped
Amitriptyline only barely helped me.
In context ↗ - Prism glasses · Helped
getting prism glasses from them
In context ↗ - FL-41 tinted glasses · Helped
the FL 41 tint kind
In context ↗ - Physical therapy · Not said
physical therapy for the vestibular/POTS issues
In context ↗ - Talk therapy · Helped
I did therapy, just kinda supportive talk therapy
In context ↗ - Pacing and accommodations · Helped a lot
I am efficient about using accommodations, pacing, and my limited energy wisely.
In context ↗ - COVID booster vaccination · Helped a lot
I got the Moderna bivalent updated booster and was half-cured.
In context ↗ - Naturdao DAO enzymes · Helped
Highly recommend naturdao because it contains 30x more DAO enzymes
In context ↗ - Quercetin · Helped
quercetin does help my MCAS
In context ↗ - Magnesium oxide · Helped
Magnesium, same thing, some research support that it does help with muscle tension and spasms.
In context ↗ - Sublingual multivitamin · Helped
my vitamin levels were perfect after I switched to the sublingual multivitamin
In context ↗ - Vitamin D+K · Helped
vitamin d+k (have to take those together!)
In context ↗ - Barimelts with iron · Not said
Barimelts with iron.
In context ↗ - Choline · Helped
supplementing it (choline and fiber)
In context ↗ - Oral ketotifen · Helped a lot
Ketotifen is the most useful for me
In context ↗ - Cromolyn sodium · Helped
Cromolyn sodium has the most impact on food sensitivities for me
In context ↗ - Antipsychotics · Worse
Those flatten you out and it’s awful. Tried one for an off label use
In context ↗ - Sound-reducing earplugs · Helped
I sometimes use those concert earplug things that reduce the overall decibels around you but keep everything and especially voices clear.
In context ↗ - Stimulants (unspecified) · Worse
All other ADHD meds crash me.
In context ↗ - Turmeric / curcumin · Not said
I react to curcumin unfortunately, thanks genetic MCAS that I've had forever.
In context ↗
Approaches: Calcium channel blockers · POTS medication · SNRIs · Alternative therapies · Antibiotics · Antihistamines & MCAS · Antivirals · Biologics & antibodies · Other antidepressants · Other drugs and medicines · Pacing · Sex hormones · Supplements · Vaccination
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| mid-2022 | Mild COVID infection, long COVID immediately afterwardsI got COVID and got long COVID *immediately* afterwards.In context ↗ | Moderate | |
| first 6 months of long COVID | About 30 minutes of energy a day; gave up her job and socialising, kept only virtual grad schoolfor the first 6 months of this I only had half an hour before it got too bad to functionIn context ↗ | Severe | |
| November 2022 | Bivalent booster; half her symptoms gone within two daysI got the Moderna bivalent updated booster and was half-cured.In context ↗ | Moderate | COVID vaccination as treatment |
| January 2023 | 75% better, gains continuing after the boosterI’m at 7 months and 75% better now.In context ↗ | Mild | COVID vaccination as treatment |
| mid-2023 | Back to 90% of pre-COVID energy and good focusI went from 70% of my pre-COVID energy for the last 9 months to 90% with good focus.In context ↗ | Near normal | Guanfacine |
| July 2023 | Crashed after COVID exposure from visiting friends, back to 40%And now I'm back at 40%.In context ↗ | Moderate | |
| October 2023 | Erythromycin for gut motility; 90% of symptoms gone while on itWhile I'm taking the erythromycin, my symptoms are 90% gone!In context ↗ | Mild | Erythromycin |
| November 2023 | Nausea worsened again after a mystery illnessMy nausea got worse again after a mystery illnessIn context ↗ | Moderate | |
| April 2024 | Back to part-time work, hobbies and seeing friendsBut I’m already back to part time work, hobbies, and at least spending time with my girlfriends and one or two friends.In context ↗ | Mild | |
| July 2024 | Setback after a COVID reinfection; only 2-3 hours of energy a day a month laterI did just get reinfected and a month later I’ve still only got 2-3 hours of energy a day.In context ↗ | Moderate | |
| July 2024 | Duloxetine stopped the post-eating migraines and POTS symptomsI am doing fantastic on duloxetine. No more migraines after eating, no more POTS.In context ↗ | Mild | |
| April 2025 | Above her pre-COVID baseline, writing novels again, still on medicationI've got 12-16 hours of energy a day now (I had 8 pre-COVID), could probably work full time for the first time ever, and I'm back to writing novels, it's awesome.In context ↗ | Near normal |
Adverse events
- COVID vaccination as treatment“even so I was really sick for two days after getting it first” In context ↗ Side effects
- Antipsychotics (unspecified)“Except for antipsychotics. Ugh. Those flatten you out and it’s awful. Tried one for an off label use” In context ↗ Mood or psychiatric effects
- Amantadine“It helps but also crashes me but at least if I NEED to focus I have it” In context ↗ Made symptoms worse
- Guanfacine“I had to cut it in half to prevent the blood pressure drop from making me exhausted though” In context ↗ Low blood pressure or fainting
- Stimulants (unspecified)“All other ADHD meds crash me.” In context ↗ Made symptoms worse
- Bright light therapy (SAD lamp, light box)“I wake up a lot when I use one of those light lamps other people use for SAD.” In context ↗ Insomnia from treatment
- “And florinef because the other meds made me feel way too weird and worse due to side effects” In context ↗ Side effects
- “Many of the non-CGRP migraine meds had horrible side effects” In context ↗ Side effects
- Antidepressants (unspecified), Doxepin (Sinequan, Silenor), Bupropion (Wellbutrin), Venlafaxine (Effexor), Duloxetine (Cymbalta), Amitriptyline (Elavil)“I’ve only found one antidepressant I can take after trying five” In context ↗ Side effects
- Bupropion (Wellbutrin)“it gave me a different, unrelated minor headache at the dose they gave me” In context ↗ Side effects
- Turmeric / curcumin“I react to curcumin unfortunately, thanks genetic MCAS that I've had forever.” In context ↗ Allergic reaction / anaphylaxis
Symptoms mentioned
Anxiety & low moodBrain fogGut problemsHeadaches & migraineLight & noise sensitivityMast cell (MCAS) & allergiesNeuropathy & tinglingPOTS & dysautonomiaPost-exertional malaiseSleep problemsTinnitusVision problems
Their words about their symptoms
- Gut problems
intense nausea, inability to eat solid food, and brain fog
In context ↗ - Brain fog
bupropion for brain fog
In context ↗ - Mast cell (MCAS) & allergies
majorly flared MCAS and POTS
In context ↗ - Headaches & migraine
Sometimes I still trigger migraines with exercise
In context ↗ - Light & noise sensitivity
I’ve got light sensitivity too
In context ↗ - Sleep problems
poor sleep quality and interrupted sleep
In context ↗ - Post-exertional malaise
I had moderate PEM at first, then mild PEM
In context ↗ - Vision problems
I also had some odd visual stuff like losing depth perception a bit
In context ↗ - Tinnitus
tinnitus that would worsen when triggered
In context ↗ - Anxiety & low mood
I am feeling kinda depressed
In context ↗ - Neuropathy & tingling
occasional numbness/tingling
In context ↗
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