Long COVID with POTS, PEM and brain fog, now much better with electrolytes and PEA400
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 18 months
- Last post
- Mar 2024
In their words
- Condition: Long COVID
Unfortunately during the first few weeks of covid I had a doctor advise me to "push myself" and to not let my body get deconditioned.
In context ↗ - At worst: Severe
For many months, I had to rely on my partner to do nearly everything for me because even the smallest chores kicked my ass.
In context ↗ - Now: Much better
I only nap, maybe once a month now, so I've improved greatly. I've still quite sick, but the napping isn't a problem anymore.
In context ↗ - Began after: COVID
during the first few weeks of covid
In context ↗
Read from 11 of their posts and comments; links to the 10 this page draws on
Summary
Long COVID from about September 2022 left them with intense POTS, PEM, brain fog and three-to-five-hour naps on bad days; doctor-advised exercise left them worse for months. Electrolytes helped crashes; diet changes, smaller meals, PEA400, propranolol and stopping pushing themselves cut napping to about once a month, and PEA400 eased brain fog, letting them read and drive occasionally. They still called themselves quite sick and not working, and paid $70 a month for PEA400.
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What they tried
What they credit
Also tried
Their words about each treatment
- push through exercises · Much worse
I stupidly trusted him and did that, and it's been MONTHS and I still feel far worse than before that.
In context ↗ - supplements suggested by family doctor and the internet · No change
almost everything did nothing except spend money I didn't have
In context ↗ - drinking water · Helped a lot
What basically erased by migraines was drinking water
In context ↗ - stopping pushing myself and resting · Helped
I had to stop pushing myself. For many months, I had to rely on my partner to do nearly everything for me because even the smallest chores kicked my ass.
In context ↗ - Gatorade / electrolyte drinks · Helped
I definitely feel like my crashes are not nearly as extreme since I've started drinking them.
In context ↗ - completely changed my diet · Helped
Foods i used to enjoy i have become sensitive to, and foods i couldnt tolerate before i now have no problem eating.
In context ↗ - eating significantly smaller meals more frequently · Helped
Started eating significantly smaller meals more frequently throughout the day
In context ↗ - PEA400 · Helped a lot
PEA400 completely changed my life. It's decreased my brainfog by such a significant amount that I am now able to read, learn, and drive again
In context ↗ - Propranolol · Helped
Propranolol. I have hyper POTS.
In context ↗
Approaches: Beta-blockers · Diet · Pacing · Supplements
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 6 months after onset: the story doesn’t say how ill they were before that. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| September 2022 | COVID-19, then long COVID symptomsduring the first few weeks of covidIn context ↗ | Not stated | |
| March 2023 | worse after doctor-advised exercise; intense POTS, PEM and 3-5 hour napsI'm now at 6 months. I have intense POTs symptoms, and still PEM.In context ↗ | Severe | |
| March 2023 | electrolytes made crashes less extremeI definitely feel like my crashes are not nearly as extreme since I've started drinking them.In context ↗ | Severe | Salt, electrolytes and fluids |
| October 2023 | PEA400 and POTS medication cut time in bed and eased brain fogAfter 3 months of taking it, I probably spend 15-20 fewer hours in bed each week.In context ↗ | Moderate | Palmitoylethanolamide (PEA) |
| March 2024 | napping about once a month; still quite sickI only nap, maybe once a month now, so I've improved greatly. I've still quite sick, but the napping isn't a problem anymore.In context ↗ | Moderate |
Adverse events
- Everyday exercise and activity“I had a doctor tell me that I needed to push through excerises until I was right at the point before passing out. I stupidly trusted him and did that, and it's been MONTHS and I still feel far worse than before that.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I have intense POTs symptoms, and still PEM.
In context ↗ - POTS & dysautonomia
I have intense POTs symptoms
In context ↗ - Brain fog
Mine has gotten substantially better!! I definitely am not 100%
In context ↗ - Sleep problems
I usually nap 3-5 hours on bad days.
In context ↗ - Headaches & migraine
I have pre-covid migraines with auras for YEARS. I still sometimes get them if I don't take care of myself well enough.
In context ↗
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