Long COVID with POTS, PEM and heavy fatigue, somewhat better with beta blocker and LDN
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 3 years
- Last post
- Mar 2023
In their words
- Condition: Long COVID
Originally infected June 2020 so two years of long covid
In context ↗ - At worst: Moderate
Now I’m lucky to get out of bed by noon.
In context ↗ - Now: Somewhat better
Some things are better, some things are worse, and most things are different.
In context ↗ - Began after: COVID
Originally infected June 2020
Read from 8 of their posts and comments; links to the 8 this page draws on
Summary
Puffin 24895 got COVID in June 2020 and had long COVID for over two years, with POTS, PEM, brain fog, pain and heavy fatigue. A beta blocker for POTS let them do more without PEM and they resumed grad school part-time. A June 2022 reinfection was eased by Paxlovid, but by December they were sleeping 10-14 hours a day. Low-dose naltrexone in 2023 cut pain and brain fog and improved stamina, though fatigue persisted.
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What they tried
What they credit
Also tried
Their words about each treatment
- nadolol · Helped
Found the right beta blocker for my POTS symptoms and was able to do more without PEM.
In context ↗ - pacing myself · Helped
Other than that, time and pacing myself are truly the most helpful things.
In context ↗ - Paxlovid · Helped
I was started on Paxlovid and it has really taken the edge off.
In context ↗ - modafinil · Not said
I take nadolol for POTS and modafinil for fatigue/brain fog on the days I have to do a lot.
In context ↗ - LDN · Helped
I’ve had a noticeable decrease in pain ... Brain fog has improved.
In context ↗
Approaches: Beta-blockers · Pacing
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. The chart starts 2 years after onset: the story doesn’t say how ill they were before that. 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 |
|---|---|---|---|
| June 2020 | COVID infection, long COVID beginsOriginally infected June 2020 so two years of long covidIn context ↗ | Not stated | |
| June 2022 | right beta blocker controlled POTS, could do more without PEMFound the right beta blocker for my POTS symptoms and was able to do more without PEM.In context ↗ | Mild | Nadolol (Corgard) |
| June 2022 | COVID reinfectionjust tested positive again a week ago despite being super careful. Symptoms were terrifyingIn context ↗ | Not stated | |
| July 2022 | POTS controlled on the right med, pacing; returned to grad school part timeI had to quit my job but have been able to resume grad school part timeIn context ↗ | Mild | Nadolol (Corgard) |
| December 2022 | sleeping 10-14 hours a day, not out of bed before noon10-14/day. ... Now I’m lucky to get out of bed by noon. LH since July 2020 and the fatigue is relentlessIn context ↗ | Moderate | |
| March 2023 | on low-dose naltrexone: less pain, better brain fog and stamina, fatigue unchangedI’ve had a noticeable decrease in pain ... Brain fog has improved. I feel like my stamina has improvedIn context ↗ | Mild | Low-dose naltrexone |
Adverse events
- Paxlovid / nirmatrelvir“bad taste from meds” In context ↗ Side effects
- Low-dose naltrexone“vivid dreams and occasional insomnia” In context ↗ Side effects
- Low-dose naltrexone“I have felt more tired/needed more naps particularly during dose changes” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
was able to do more without PEM
In context ↗ - POTS & dysautonomia
Found the right beta blocker for my POTS symptoms
In context ↗ - Brain fog
modafinil for fatigue/brain fog on the days I have to do a lot
In context ↗ - Sleep problems
10-14/day. ... Now I’m lucky to get out of bed by noon.
In context ↗ - Pain & fibromyalgia
I’ve had a noticeable decrease in pain (was taking Tylenol multiple times a day, now take it maybe a few times a week)
In context ↗ - Flu-like symptoms
My sore throat was gnarly too—felt like strep!
In context ↗
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