Long COVID
Severe → much betterIll 3 years before improving or writingNeeds ongoing treatment
Bedbound with long COVID for about two years, much better after ivabradine and fludrocortisone
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 3 years
- Last post
- Oct 2026
In their words
- Condition: Long COVID
I got long covid/POTS/MCAS from OG covid march 2020.
In context ↗ - At worst: Severe
I was bedbound for basically a couple years, and managed to get out of that by identifying and treating my POTS.
In context ↗ - Now: Much better
I've been able to massively improve my quality of life during the past two years. I'll be disabled my whole life, but I'll have a life.
In context ↗ - Began after: COVID
I got long covid/POTS/MCAS from OG covid march 2020.
In context ↗
Read from 67 of their posts and comments; links to the 32 this page draws on
Summary
Beech 34965 developed long COVID, POTS and MCAS after a severe COVID infection in March 2020 and was bedbound for about two years. A cardiologist's ivabradine, especially, plus fludrocortisone, described as life changing, got them out of bed; antihistamines, testosterone and clonidine also helped manage symptoms, while tirzepatide helps mast cell reactions but not CFS/ME and causes next-day malaise. They remain disabled and use a powerchair, with lingering shortness of breath, poor sleep and MCAS flares.
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What they tried
What they credit
Ivabradine· Helped a lot · mainelectrolytes and compression socks· Helpedelectrolytes and compression socks· HelpedBenadryl / diphenhydramine, later loratadine· HelpedBenadryl / diphenhydramine, later loratadine· HelpedTestosterone· Helpedlow histamine diet· Helpedfludrocortisone· Helpedvisible app· Helpedpacing· Helped
Also tried
powerchair· HelpedAtomoxetine· Helpedstimulants / vyvanse· Helpedweed· Helpedbeta blockers· Helpedanticongestant spray· Helpedfamotadine· Helpedmucuna pruriens extract powder· Helpedclonidine· Helpedtirzepatide· Helpednicotine patches· No change5-HTP supplement· Worsedeep breathing exercises· WorseFinasteride· Worsedutasteride· Not saidCOVID vaccination as treatment· Not saidWalker / rollator· Not said
Their words about each treatment
- powerchair · Helped
I use my powerchair a lot to save me energy and avoid pain.
In context ↗ - Ivabradine · Helped a lot
Especially ivabradine, I was bedbound before I started it.
In context ↗ - electrolytes and compression socks · Helped
Electrolytes and compression socks help a lot
In context ↗ - Atomoxetine · Helped
I take Atomoxetine and it works way better for my adhd than stimulants
In context ↗ - stimulants / vyvanse · Helped
Though for me it definitely improved after getting on vyvanse.
In context ↗ - Benadryl / diphenhydramine, later loratadine · Helped
I'm stable for a long time on a small dose ... a combination of h1+h2 blockers (loratadine and famotadine) really work for me
- weed · Helped
Helps a lot with pain, just wish it was more helpful for sleeping!
In context ↗ - Testosterone · Helped
I'm trans and starting testosterone made my symptoms less severe.
In context ↗ - 5-HTP supplement · Worse
Turns out it was some kind of reaction to my 5-HTP supplement, I stopped it and it hasn't really happened since.
In context ↗ - low histamine diet · Helped
I hope your low histamine diet goes well. It does help me a lot.
In context ↗ - nicotine patches · No change
currently trialing nicotine patches too. Just been a few days and not feeling much of anything but I'm also in a bit of a minor crash.
In context ↗ - fludrocortisone · Helped
he prescribed ivabradine + fludrocortisone, and it has been life changing.
In context ↗ - beta blockers · Helped
I was taking beta blockers before ivabradine and it helped a little, but definitely not enough.
In context ↗ - anticongestant spray · Helped
when I use it, it's the only time I feel I can breathe properly and get enough air in.
In context ↗ - deep breathing exercises · Worse
I do deep breathing exercises like this, but they make me feel like I can't breathe / I'm drowning.
In context ↗ - visible app · Helped
My budget in the visible app is 6 pace points a day ... I feel best when I stay under it consistently
In context ↗ - pacing · Helped
I feel best when I stay under it consistently
In context ↗ - famotadine · Helped
a combination of h1+h2 blockers (loratadine and famotadine) really work for me
In context ↗ - mucuna pruriens extract powder · Helped
Something that was a huge game changer for me was mucuna pruriens extract powder.
In context ↗ - clonidine · Helped
Clonidine really helps me tbh
In context ↗ - Finasteride · Worse
Finasteride made me feel more fatigue
In context ↗ - dutasteride · Not said
dutasteride has been side effect free so far
In context ↗ - tirzepatide · Helped
It's definitely reduced my serious anaphylaxis reactions, which is obviously super important for me.
In context ↗ - COVID vaccination as treatment · Not said
then an absolutely terrible reaction to my first vaccine
In context ↗ - Walker / rollator · Not said
Pretty sure I gave myself costochondritis partially because of not holding my rollator right and using it too many hours the first week I got it.
In context ↗
Approaches: H1 antihistamines · POTS medication · Diet · Pacing · Sex hormones
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 | severe COVID infection, followed by long COVID, POTS and MCASI was so sick for basically the entirety of March 2020, I genuinely thought I might die.In context ↗ | Severe | |
| 2020-2022 | bedbound for a couple of yearsI was bedbound for basically a couple years, and managed to get out of that by identifying and treating my POTS.In context ↗ | Severe | |
| 2023 | cardiologist treated her POTS and she got out of the bedbound stagehe prescribed ivabradine + fludrocortisone, and it has been life changing. Especially ivabradine, I was bedbound before I started it.In context ↗ | Moderate | Ivabradine |
| May 2025 | came off a medication that helps her in order to go through medical testingI'm currently off some medication that genuinely helps me so I can go through medical testing that will likely be useless, that I've been waiting for months for.In context ↗ | Severe | |
| September 2026 | massive MCAS flare after huge life stressI'm in a massive MCAS flare. It's due to huge life stress.In context ↗ | Moderate | |
| October 2026 | still disabled, uses powerchair and rollator, life much improved since the bedbound yearsI'll be disabled my whole life, but I'll have a life.In context ↗ | Moderate |
Adverse events
- Cannabis (THC, marijuana)“I feel like the only person in the world where weed just makes it harder for me to sleep” In context ↗ Insomnia from treatment
- COVID vaccination as treatment“then an absolutely terrible reaction to my first vaccine” In context ↗ Other
- “Turns out it was some kind of reaction to my 5-HTP supplement, I stopped it and it hasn't really happened since.” In context ↗ Side effects
- Meditation, yoga, breathwork“I do deep breathing exercises like this, but they make me feel like I can't breathe / I'm drowning ... Definitely gives me a headache too.” In context ↗ Made symptoms worse
- Walker / rollator“Pretty sure I gave myself costochondritis partially because of not holding my rollator right and using it too many hours the first week I got it.” In context ↗ Other
- Finasteride (Propecia)“Finasteride made me feel more fatigue” In context ↗ Made symptoms worse
- Tirzepatide (Mounjaro, Zepbound)“it hasn't really helped my CFS/ME much, and I always feel like crap the day after my weekly injection” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBreathlessnessHeart symptoms & palpitationsLoss of smell or tasteMast cell (MCAS) & allergiesMuscle weaknessPOTS & dysautonomiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Post-exertional malaise
breaking into the exertion zone is what actually feels like it does proper damage to me
In context ↗ - POTS & dysautonomia
I got long covid/POTS/MCAS from OG covid march 2020.
In context ↗ - Mast cell (MCAS) & allergies
I have MCAS and I think that fact that it's an antihistamine helps a lot.
In context ↗ - Sleep problems
My sleep still isn't the best ever but I've improved it a huge amount.
In context ↗ - Breathlessness
I have pretty terrible shortness of breath
In context ↗ - Heart symptoms & palpitations
my spikes moving around in bed were way worse than this, before I started taking ivabradine
In context ↗ - Muscle weakness
without wearing them my legs feel a lot heavier and harder to move
In context ↗ - Loss of smell or taste
I had extremely reduced smell capabilities for ages.
In context ↗ - Anxiety & low mood
I have horrible cptsd nightmares that were genuinely making me dread sleep
In context ↗ - Temperature regulation
I got a wool mattress topper and it reduced my sweating quite a lot
In context ↗
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