Basically bedridden with long COVID chest pain, now nearly back to normal on amlodipine
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Jan 2025
In their words
- Condition: Long COVID
I have experience with PVS (aka Long Covid)
In context ↗ - At worst: Severe
Before I got on focused CMD treatment, I was basically bed ridden.
In context ↗ - Now: Near normal
and would have a pretty normal life if I didn't have other medical issues on top of this ... If there's chest pain, I slow down.
In context ↗ - Began after: another virus
I've had nasty post viral syndrome three times
Read from 6 of their posts and comments; links to the 4 this page draws on
Summary
Zephyr 46814 had post-viral syndrome three times, first at age 12; one followed COVID in 2020. They also have POTS, MCAS, coronary microvascular disease and chronic regional pain syndrome. Constant chest pain and zero stamina left them basically bedridden. A higher dose of amlodipine pretty much got rid of the chest pain, and within a couple of weeks they were getting their strength back; they now forget they have CMD.
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What they tried
What they credit
Also tried
Their words about each treatment
- Propranolol · Helped
I take 20mg 3x/day with a rescue dose built into my prescription.
In context ↗ - Xanax · Helped
If my HR goes high and Propranolol isn't bringing it down, I take a Xanax. It calms the CNS so it helps.
In context ↗ - Clonidine · No change
Clonidine is the drug many people with hyperPOTS end up on. I failed that one
In context ↗ - Ranexa/ranolazine · No change
Ranexa/ranolazine wasn't helpful to me but Amlodipine is.
In context ↗ - Ramipril · Not said
I was put on Ramipril for a while for it but I have a mast cell disease so it was deemed too risky to continue
In context ↗ - Amlodipine · Helped a lot
I take 7.5mg in the evening and that dose pretty much got rid of my chest pain.
In context ↗ - Normal saline IV · Helped a lot
If I don't, my POTS gets nasty ... It has been a tremendous help. It cuts down on my episodes and flares significantly.
In context ↗ - Pedialyte and salty food · Not said
even if I'm drinking nothing but Pedialyte and eating nothing but salty food
In context ↗ - Paxlovid · Helped
I qualified for Paxlovid during the second covid infection (I have more than just POTS) and did not get PVS, thankfully.
In context ↗ - Relaxation and grounding techniques · No change
I attempted to use relaxation and grounding techniques while I waited for the Xanax to work.
In context ↗
Approaches: Calcium channel blockers · POTS medication · Antivirals
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. Hover or tap a point. 2 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| age 12 | first bout of post-viral syndromeMy first bout with PVS was when I was 12.In context ↗ | Not stated | |
| 2020 | COVID infection triggered post-viral syndromeOnly one of them was covid, which I had in 2020 and again in 2024.In context ↗ | Not stated | |
| before focused CMD treatment | basically bedridden with constant chest painBefore I got on focused CMD treatment, I was basically bed ridden.In context ↗ | Severe | |
| a couple of weeks after higher-dose amlodipine | strength coming back on higher dose of amlodipineafter just a couple of weeks on a higher dose of Amlodipine, I was getting my strength backIn context ↗ | Mild | Amlodipine (Norvasc) |
| 2025-01-13 | mostly forgetting the microvascular disease, going out, concerts, walksI honestly forget that I have it most of the time.In context ↗ | Near normal |
Symptoms mentioned
Their words about their symptoms
- POTS & dysautonomia
medical PTSD, mast cell activation syndrome (MCAS), chronic regional pain syndrome, POTS
In context ↗ - Mast cell (MCAS) & allergies
mast cell activation syndrome (MCAS)
In context ↗ - Heart symptoms & palpitations
I lived with constant chest pain for a year
In context ↗ - Pain & fibromyalgia
chronic regional pain syndrome
In context ↗
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