Long COVID
No benefitIll for 18 months
Very sick with long COVID for over a year, still severely limited after vein angioplasty
- Condition
- Long COVID
- At worst
- Not stated
- Ill for
- 18 months
- Last post
- Sep 2026
In their words
- Condition: Long COVID
diagnosed with severe POTS with delayed orthostatic hypotension, long COVID, and recently found out I meet the criteria for MCAS and ME/CFS
In context ↗ - Now: No benefit
I am on and have tried many medicines for POTS, but I still feel awful
In context ↗ - Began after: COVID
everything worsening after Covid infections in 2024
Summary
Tide 45816 has been very sick for over a year, worsening after COVID infections in 2024, with long COVID, severe POTS, MCAS and ME/CFS criteria and May-Thurner syndrome. An angioplasty for the compressed vein gave 1.5 days of near-normal function, then everything returned; repeat saline IVs lowered their heart rate but were not the same. A second, larger procedure months later did not repeat the improvement, and they remained severely limited.
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What they tried
Also tried
angioplasty· Helped a lot · wore offsaline IV fluids· HelpedAllegra· Helpedfamotidine· No changeanesthesia (propofol)· Not saidlidocaine injection· Not saidmany medicines for POTS· Not said
Their words about each treatment
- angioplasty · Helped a lot
I had the angioplasty procedure and felt INCREDIBLE for 1.5 days post op.
In context ↗ - saline IV fluids · Helped
I repeated IV fluids months later, and while it lowered my HR and was beneficial, it was not the same.
In context ↗ - anesthesia (propofol) · Not said
I haven’t had any issues whatsoever with anesthesia 3x for a colonoscopy, endoscopy, and angioplasty
In context ↗ - lidocaine injection · Not said
lidocaine injection at neck injection site
In context ↗ - many medicines for POTS · Not said
I am on and have tried many medicines for POTS, but I still feel awful
In context ↗ - famotidine · No change
I didn’t notice a different with famotidine so ended up cutting it out
In context ↗ - Allegra · Helped
Allegra is esssnfial
In context ↗
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. 2 steps have no time and sit in story order between the steps around them. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2024 | onset of long COVID after COVID infections, later diagnosed with severe POTS, MCAS and ME/CFS criteriaI've been very sick for over a year, with everything worsening after Covid infections in 2024.In context ↗ | Moderate | |
| — | felt incredible for 1.5 days after angioplasty, heart rate normal and brain fog liftedI had the angioplasty procedure and felt INCREDIBLE for 1.5 days post op.In context ↗ | Near normal | Other surgery (adrenal, lung, venoplasty) |
| — | benefit from the angioplasty reverted after 1.5 daysThis unfortunately all reverted back after 1.5 days.In context ↗ | Moderate | |
| 2026-09-07 | still severely limited after a second, more significant procedure gave no repeat improvementI still feel awful and have other things going on that severely limit my lifeIn context ↗ | Moderate |
Symptoms mentioned
Brain fogGut problemsHeart symptoms & palpitationsMast cell (MCAS) & allergiesPOTS & dysautonomiaTemperature regulation
Their words about their symptoms
- POTS & dysautonomia
I'm diagnosed with severe POTS with delayed orthostatic hypotension
In context ↗ - Brain fog
My worst symptoms are tachycardia, brain fog, fatigue
In context ↗ - Heart symptoms & palpitations
My worst symptoms are tachycardia
In context ↗ - Temperature regulation
overheating/poor temp regulation
In context ↗ - Mast cell (MCAS) & allergies
recently found out I meet the criteria for MCAS
In context ↗ - Gut problems
some degree of food aversion/loss of appetite
In context ↗