Bedbound with long COVID, improved to 50% after rehab and ivabradine, then relapsed
- Condition
- Long COVID
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- 4 years
- Last post
- Aug 2026
In their words
- Condition: Long COVID
I can only speak for myself, but after my first long haul (Oct 2022 to March 2023) I didn't visit the sub.
In context ↗ - At worst: Very severe
Both he and my headache neuro have taken me from profoundly severe to housebound, able to go out and do things occasionally with caution
In context ↗ - Now: Relapsed
it brought some relief hut no stop to thr rolling pem (0.5mg though). My doctor wants to try lda and hoping it might stop the spiral
In context ↗ - Began after: COVID
Both times my symptoms began with acute infection (no lag).
Read from 9 of their posts and comments; links to the 8 this page draws on
Summary
Tern 31577 caught COVID in October 2022 and had a moderate long haul with POTS, SVTs, insomnia and gut and breathing problems that settled by March 2023, credited to time alone. A November 2023 reinfection was harsher, with neuropathy, pain and headaches; they became bedbound before neuro rehab, biofeedback, ivabradine, metformin and a statin brought them to about 50%. By August 2026 they were still dealing with rolling PEM.
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What they tried
What they credit
Also tried
Their words about each treatment
- beta blockers · Not said
SVTs (had to go on beta blockers)
In context ↗ - supplements · No change
stopped taking supplements, and began walking more. But I don't think any of those actually made me better.
In context ↗ - began walking more · No change
began walking more. But I don't think any of those actually made me better.
In context ↗ - zyrtec · Helped
taking zyrtec+pepcid brings my heart rate down to normal when it's flaring...like a 20 bpm drop
In context ↗ - naratriptan · Helped
I took a migraine med (naratriptan) and felt a lot better for a bit
In context ↗ - neuro rehab facility · Helped a lot
I am working with a neuro rehab facility that worked a lot with Long COVID patients doing concussion/stroke rehab
In context ↗ - biofeedback · Helped a lot
I also do biofeedback with a therapist at my migraine neuros office
In context ↗ - ivabradine · Helped a lot
ivabradine (for POTS HUGELY important)
In context ↗ - metformin · Helped
I believe the metformin + simvastatin restored my physical energy.
In context ↗ - continous birth control · Helped
continous birth control for all the hormone/metabolic/endocrine perturbation
In context ↗ - R-ALA · Helped
R-ALA helped here like a ton
In context ↗ - B Vitamins · Helped
I think R-ALA, B Vitamins, Omega 3, Evening primrose oil, and vitamin E
In context ↗ - flexeril · Not said
Propranolol and flexeril as needed.
In context ↗ - lots of naps, rest, limited screen time · Not said
I also do all the usual lifestyle stuff -- lots of naps, rest, limited screen time.
In context ↗ - low histamine diet · Not said
Lots of rest, low histamine diet, and all the other lifestyle stuff.
In context ↗ - Accupuncture · Helped
Accupuncture maybe (?) helped.
In context ↗ - nerivio · Not said
getting me started on a device called nerivio which he thinks has decent results
In context ↗ - online zen classes · Helped
I signed up for online zen classes and do a lot of sketching/art now which has been therapeutic for me.
In context ↗ - klonopin · Helped
I took klonopin 2 dags in a row and it brought some relief hut no stop to thr rolling pem (0.5mg though).
In context ↗ - LDA · Not said
My doctor wants to try lda and hoping it might stop the spiral
In context ↗
Approaches: POTS medication · Mind-body practices · Other drugs and medicines · Sex hormones · Statins
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 | After |
|---|---|---|
| October 2022 | COVID infection starts first long haulafter my first long haul (Oct 2022 to March 2023)In context ↗ | |
| March 2023 | first long haul settles; time creditedI got better when I stopped posting here, stopped taking supplements, and began walking more.In context ↗ | |
| November 2023 | COVID reinfection, much more brutal second long haulI got reinfected and it's different this time and much more brutal.In context ↗ | |
| early 2024 | bedbound, among the most severe cases doctors had seenI'm also getting slowly better (7 months in) when I was one of the most severe at a point (bedbound etc).In context ↗ | |
| July 2024 | housebound, able to go out occasionally, about 50%I'm up to about 50% after being truly near death for a bit.In context ↗ | Ivabradine |
Symptoms mentioned
Their words about their symptoms
- Tinnitus
I'd say it's 90% gone, but took about 5-6 months.
In context ↗ - POTS & dysautonomia
My symptoms were POTS, SVTs (had to go on beta blockers)
In context ↗ - Heart symptoms & palpitations
SVTs (had to go on beta blockers)
In context ↗ - Breathlessness
gastro issues SOB
In context ↗ - Anxiety & low mood
I swing from depressed to angry right now.
In context ↗ - Brain fog
the most persistent stuff is the cognitive fatigue, neuro issues and neuropathy.
In context ↗ - Pain & fibromyalgia
Much more body aches and pains, neuropathy, and fatigue and headaches.
In context ↗ - Neuropathy & tingling
I also have small fiber neuropathy, but it's healing as well
In context ↗ - Headaches & migraine
my eyesight is blurry again with this horrible migraine
In context ↗ - Vision problems
I have a lot of vision issues
In context ↗ - Light & noise sensitivity
I think because of the photosensitivity some part of this is migraine related.
In context ↗ - Muscle weakness
Couldn't walk, reflexes all gone or hyper active.
In context ↗ - Mast cell (MCAS) & allergies
Even weird ones like rashes, mouth sores, livedo reticulous
In context ↗
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