Long COVID
Moderate → near normalIll 5 months before improving or writingNeeds ongoing treatment
Debilitated for months by long COVID, now 90–95% functional after CBD
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 5 months
- Last post
- Dec 2023
In their words
- Condition: Long COVID
I think the majority of my long haul symptoms started after a second exposure to Covid.
In context ↗ - At worst: Moderate
My worst long term symptom is ear pain (just the left ear) and daily headaches that made me basically completely debilitated most days.
In context ↗ - Now: Near normal
I consider myself totally better (99.9% can function normally buy still get the occasional light reminder).
In context ↗ - Began after: COVID
First exposure I was terribly sick.
In context ↗ - Says they never had: Sleep problems
I wasn't having sleeping issues
Read from 113 of their posts and comments; links to the 47 this page draws on
- May 2021
- Mar 2021
- Apr 2023
- Jul 2021
- May 2021
- Apr 2021
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- Nov 2021
- Dec 2021
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Summary
Alpine 41999, a woman of 32, fell ill with COVID and was debilitated for months by headaches, left ear pain and facial numbness. CBD, started after five months of symptoms and later taken as a daily tincture, relieved the head pain and she credits it with her turnaround, along with electrolytes, antihistamines, pacing and physical therapy. A Pfizer vaccination in spring 2021 helped, and by July 2021 she reported being about 90–95% functional, though heat, exercise and allergens could still trigger relapses.
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What they tried
What they credit
CBD· Helped a lot · mainElectrolytes / hydration (Scivation Xtend)· Helped a lot · mainPfizer COVID vaccine· Helped a lotMolnupiravir· Helped a lotDaily antihistamine (generic Zyrtec)· HelpedCompression clothing/socks· HelpedVitamin D· HelpedOmegas· HelpedCoQ10· HelpedMethyl B12 (sublingual)· HelpedMelatonin· HelpedPacing· HelpedPhysical therapy and graded exercise rehab· HelpedVagal nerve massage, humming and gargling· HelpedDiaphragmatic breathing and meditation· HelpedCold showers and ice packs· HelpedCutting out trigger foods (alcohol, dairy, pork, green tea)· HelpedCutting out trigger foods (alcohol, dairy, pork, green tea)· HelpedPrioritising rest and sleep· Helped
Also tried
Ibuprofen· HelpedSudafed· HelpedFlonase (nasal steroid)· HelpedEustachian tube massage and Modified Muncie technique· HelpedNeti pot / sinus rinses· No changeAntibiotics (for ear infections)· No changeCannabis (THC)· WorseOral steroids· Not saidMultivitamin (with molybdenum and selenium)· Not saidMagnesium/calcium/zinc/Vit K· Not saidMagnesium/calcium/zinc/Vit K· Not saidMagnesium/calcium/zinc/Vit K· Not saidVitamin C· Not saidGlutathione· Not saidL-carnitine· Not saidLion's mane· Not saidTurmeric/ginger/cinnamon tea· Not saidTurmeric/ginger/cinnamon tea· Not saidTurmeric/ginger/cinnamon tea· Not saidAlbuterol inhaler· Not saidBlood pressure medication· Not saidFermented foods (kraut, miso, kefir, yoghurt)· Not saidHigh-protein intake and protein powder· Not saidCollagen· Not saidAvoiding allergens and irritants (masks, unscented products)· Not said
Their words about each treatment
- Ibuprofen · Helped
Ibuprofen and ice did ok, but you can only take ibuprofen for so long
In context ↗ - Sudafed · Helped
The game changer for me was when I tried taking sudafed and it opened up my ear and gave me relief from the headaches
In context ↗ - Oral steroids · Not said
I have an hypothesis that the post Covid steroid use directly on my lungs helped me out a lot to kick the SOB.
In context ↗ - Neti pot / sinus rinses · No change
nothing I tried seemed to touch it much (ibuprofen, steroids, net pot, antihistamines)
In context ↗ - Antibiotics (for ear infections) · No change
the back to back rounds of antibiotics for ear infections didn't help
In context ↗ - Flonase (nasal steroid) · Helped
Flonase and antihistamines helped a little
In context ↗ - Daily antihistamine (generic Zyrtec) · Helped
Every time I forget antihistamines for a few days I start to get some mild symptom creep
In context ↗ - CBD · Helped a lot
I now take 25mg of cbd orally every day (as a tincture) and it has honestly given me my life back.
In context ↗ - Electrolytes / hydration (Scivation Xtend) · Helped a lot
Electrolytes and CBD are the two supplements/treatments that had the biggest and most immediate positive effects on my symptoms.
In context ↗ - Compression clothing/socks · Helped
I felt like they gave me a little extra pep in my step, more mental clarity and they keep my heart rate a bit lower during exercise.
In context ↗ - Cannabis (THC) · Worse
THC (in moderate to high amounts) absolutely exacerbates my symptoms.
In context ↗ - Eustachian tube massage and Modified Muncie technique · Helped
the relief this plus the ETD massage gave me was keeping me sane
In context ↗ - Vitamin D · Helped
I came back low on that and do feel like supplementing helped with symptom relief for sure
In context ↗ - Omegas · Helped
I also think melatonin, omegas and CoQ10 helped, but that's harder to say.
In context ↗ - Multivitamin (with molybdenum and selenium) · Not said
I’ve also been taking a solid multivitamin with molybdenum and selenium in it
In context ↗ - Magnesium/calcium/zinc/Vit K · Not said
I take magnesium at night
In context ↗ - Vitamin C · Not said
vitamin d, c, and later on I started lions mane
In context ↗ - Methyl B12 (sublingual) · Helped
CBD tincture, electrolytes, compression socks, avoiding the heat/overheating, cold showers, vitamin D, Methyl B12, vagal nerve stimulation, antihistamines, diaphragmatic breathing, physical therapy. Those are the FOR SURE ones.
In context ↗ - Glutathione · Not said
I stopped taking the L carnitine, glutathione and omegas just cause I ran out and they're expensive.
In context ↗ - Lion's mane · Not said
I'm working on bringing my brain back with lion's mane and sudoku
In context ↗ - Melatonin · Helped
I took melatonin for awhile and that marked a turning point for me too. The level of restful sleep on melatonin was amazing
In context ↗ - Turmeric/ginger/cinnamon tea · Not said
For awhile I was drinking a turmeric/ginger/cinnamon tea
In context ↗ - Pfizer COVID vaccine · Helped a lot
the vaccine noticeably and considerably helped my nuero issues, including brain fog, memory and word-finding issues
In context ↗ - Albuterol inhaler · Not said
I take a hit on my inhaler and it usually resolves within a few hours
In context ↗ - Blood pressure medication · Not said
I phased out using electrolytes, bp meds, and cbd and I am still doing ok
In context ↗ - Pacing · Helped
PACING and physical therapy has been huge.
In context ↗ - Physical therapy and graded exercise rehab · Helped
I’ve worked really hard the last year to slowly build on my exercise routine and now I can lift weights, hike and even jog.
In context ↗ - Vagal nerve massage, humming and gargling · Helped
I've found vagus stimulation very helpful, but the stim device was too much for me.
In context ↗ - Diaphragmatic breathing and meditation · Helped
Everytime it hit, I’d sit down and do deep breathing and meditate until it passed. I think it really helped.
In context ↗ - Cold showers and ice packs · Helped
I feel better after cold showers and sometimes I put ice packs on my neck/head/back
In context ↗ - Cutting out trigger foods (alcohol, dairy, pork, green tea) · Helped
I didn’t go full anti-inflamm diet, but cutting out things that seemed triggering was hugely helpful.
In context ↗ - Fermented foods (kraut, miso, kefir, yoghurt) · Not said
I also pushed fermented foods like kraut and miso
In context ↗ - High-protein intake and protein powder · Not said
I’ve been pushing protein as if I’m powerlifting again and I don’t know if it’s helped
In context ↗ - Collagen · Not said
I was bad about taking collagen, but good about omegas and hydration.
In context ↗ - Prioritising rest and sleep · Helped
So much rest, too. It was a huge luxury, but I don't have dependents and was unemployed so I didn't set a morning alarm for a really long time.
In context ↗ - Avoiding allergens and irritants (masks, unscented products) · Not said
wearing a mask when dusting/vacuuming, switching to unscented products
In context ↗ - Molnupiravir · Helped a lot
once I was able to keep the molnupiravir down, it really really helped
In context ↗
Approaches: H1 antihistamines · POTS medication · Alternative therapies · Antivirals · Diet · Mind-body practices · Other drugs and medicines · Pacing · Radical rest · Supplements · Vaccination · Vagus nerve stimulation
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 |
|---|---|---|---|
| March 2020 | COVID-19 infection, very sick with months of air hungerFirst exposure I was terribly sick.In context ↗ | Moderate | |
| June 2020 | worst months 3-5: daily debilitating headaches, ear pain, light and sound sensitivitydaily headaches that made me basically completely debilitated most daysIn context ↗ | Moderate | |
| around month 10 (early 2021) | started gradually improving on CBD tincture, electrolytes and restAt some point around 10 months I started gradually improving.In context ↗ | Mild | |
| April 2021 | Pfizer vaccination lifted neuro symptoms quicklyVaccine brought me to 90% very quickly.In context ↗ | Near normal | COVID vaccination as treatment |
| late May 2021 | relapse after gardening on a hot dayMy last bad relapse was about late may when I was doing some gardening on a hot day.In context ↗ | Mild | |
| July 2021 | feeling really good, about 90%I'm over a year out and I'm feeling really good right now - like, 90%.In context ↗ | Near normal | |
| early September 2021 | bad days after trying deadliftsI think its what caused my bad days recentlyIn context ↗ | Mild | |
| March 2022 | lifting normally, hiking up to 8 mountainous milesnow two years post covid, I am lifting normally againIn context ↗ | Near normal | |
| April 2022 | relapse after COVID exposure (never tested positive)did have a suspicious long haul symptom relapse for a couple weeks afterIn context ↗ | Mild | |
| September 2022 | long haul symptoms creeping back after another exposureI’m currently dealing with the effects of another exposureIn context ↗ | Mild | |
| April 2023 | considers herself totally better with occasional light remindersI consider myself totally better (99.9% can function normally buy still get the occasional light reminder).In context ↗ | Near normal |
Adverse events
- Pseudoephedrine (Sudafed)“I use the sudafed sparingly because it was giving me insomnia/elevating my heartrate when I used it at the level the doctor prescribed.” In context ↗ Insomnia from treatment
- Pseudoephedrine (Sudafed)“Sudafed did cause some elevated fluttery HR and insomnia. I chalked it up to being a stimulant and it was tolerable short term.” In context ↗ Heart rhythm problems
- Cannabis (THC, marijuana)“I tried thc earlier in my long haul and found it made my pain worse!” In context ↗ Made symptoms worse
- “I kept digging a deeper hole even though I was trying to do workouts I considered very easy.” In context ↗ Made symptoms worse
- Vagus nerve stimulation“I did NOT like it when PT and I tried it on my neck/trap/vagus area. Gave me a bit *more* tension and stiffness and caused a headache to start.” In context ↗ Made symptoms worse
- COVID vaccination as treatment“about a week after my second shot I had a super strong anxiety response and one of the most powerful "waves of doom and despair" that I had experienced throughout my long haul” In context ↗ Mood or psychiatric effects
- COVID vaccination as treatment“I was definitely more emotional and tired for a while after my second shot.” In context ↗ Side effects
- Cannabis (THC, marijuana)“It also made my numbness and tingling way more intense” In context ↗ Made symptoms worse
- Cannabis (THC, marijuana)“Also caused some weird anxiety (never got paranoid with it before).” In context ↗ Mood or psychiatric effects
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessFlu-like symptomsGut problemsHeadaches & migraineLight & noise sensitivityMast cell (MCAS) & allergiesMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseTemperature regulationTinnitusVision problems
Their words about their symptoms
- Post-exertional malaise
I can easily trigger PEM if I try to ignore it and stay in the heat
In context ↗ - Brain fog
memory and focus isnt back to 100
In context ↗ - POTS & dysautonomia
eventually my pots faded out!
In context ↗ - Mast cell (MCAS) & allergies
I never was sensitive to allergies before
In context ↗ - Pain & fibromyalgia
throbbing ear pain and stiffness in my neck and ear area
In context ↗ - Headaches & migraine
daily headaches that made me basically completely debilitated most days
In context ↗ - Gut problems
I had some gut issues at the beginning of my long haul
In context ↗ - Light & noise sensitivity
sensitivity to light and sound
In context ↗ - Breathlessness
Occasional air hunger for a few months, but that resolved.
In context ↗ - Muscle weakness
My core got SO weak
In context ↗ - Neuropathy & tingling
I also get numbness and tingling on the left side of my face.
In context ↗ - Anxiety & low mood
I had a super strong anxiety response
In context ↗ - Flu-like symptoms
I did have low level fever for a long while
In context ↗ - Tinnitus
I haven't had pulsing tinnitus in a really long time now
In context ↗ - Temperature regulation
I now have a problem with heat tolerance/overheating
In context ↗ - Vision problems
I counted 16 floaters
In context ↗
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