Long COVID with brain fog and exhaustion, improved on modafinil then relapsed off it
- Condition
- Long COVID
- At worst
- Not stated
- Ill before improving or writing
- 6 years
- Last post
- Jun 2026
In their words
- Condition: Long COVID
I just finished the active part of a. clinical trial for Long Covid called SLEEP-RECOVER.
In context ↗ - Now: Relapsed
I was given Modafinil… it freaking saved me! I felt like myself! ... I’m back to exhaustion and brain fog.
In context ↗ - Began after: COVID
Before Covid I never had to wear deodorant (I was 37). After was immediate.
In context ↗
Read from 7 of their posts and comments; links to the 5 this page draws on
Summary
A Reddit user with long COVID for six years, with distorted smell, head rushes, brain fog and exhaustion. They said something made them worse, and a tattoo left them sleeping 14 hours that night. In a modafinil trial they felt like themselves again, able to socialise, work out and travel, with head rushes and smell distortion remaining; stopping the drug for a few weeks brought back exhaustion and brain fog.
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What they tried
What they credit
Their words about each treatment
- nicotine toothpicks · Not said
It does the oral thing and the nicotine thing. I really like them!
In context ↗ - Covid booster shot · Worse
Made it worse for me
In context ↗ - Modafinil · Helped a lot
I was given Modafinil… it freaking saved me! I felt like myself!
In context ↗
Approaches: Stimulants
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 5 years 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 |
|---|---|---|---|
| 2020 | long COVID began; body odour changed immediately; smell distortion followedBefore Covid I never had to wear deodorant (I was 37). After was immediate.In context ↗ | Not stated | |
| 2025-06-09 | crashed after getting a tattoo, slept 14 hours that nightTattoo went great! No issue at all during the event or with healing… But I slept for 14 hours that night once my nervous system crashed.In context ↗ | Moderate | |
| 2025-10-28 | COVID booster made symptoms worseMade it worse for meIn context ↗ | Moderate | |
| 2025 | felt like themselves on modafinil in the SLEEP-RECOVER trial, could socialise, work out and travelit freaking saved me! I felt like myself!In context ↗ | Near normal | Modafinil / armodafinil |
| 2026-01 | stopped modafinil at end of the trial's active phase; exhaustion and brain fog returnedI’m back to exhaustion and brain fog.In context ↗ | Moderate |
Adverse events
- COVID vaccination as treatment“Made it worse for me” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Loss of smell or taste
onions still smell like Covid death
In context ↗ - Brain fog
I’m back to exhaustion and brain fog
In context ↗ - POTS & dysautonomia
I still got head rushes
In context ↗ - Post-exertional malaise
I slept for 14 hours that night once my nervous system crashed
In context ↗
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