Long COVID with PEM and brain fog, now much better with rest and nicotine patches
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 1 year
- Last post
- Oct 2024
In their words
- Condition: Long COVID
before getting LC in October of 2023
In context ↗ - At worst: Moderate
Nicotine patches brought me from what I would say is 30% to 60%
In context ↗ - Now: Much better
Nicotine patches brought me from what I would say is 30% to 60% which is a pretty big improvement
In context ↗ - Began after: COVID
before getting LC in October of 2023
In context ↗
Read from 14 of their posts and comments; links to the 7 this page draws on
Summary
Got long COVID in October 2023 and slowly improved with rest, then nicotine patches from around January 2024, which they say lifted their baseline from about 30% to 60%, reduced PEM and brain fog, improved sleep and helped ADHD; guanfacine later helped too. By mid-2024 they could work from home and do chores without PEM, and by August 2024 they could do 99% of the things they love, still masking.
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What they tried
What they credit
Their words about each treatment
- ADHD stimulant meds · Not said
Caffeine raises my heart rate and blood pressure much more than the patch does, same with stimulant meds, as well as messing with my sleep
In context ↗ - finasteride · Helped
I was on 1mg of finasteride for a few years to stop/slow hair loss and I was doing well on it, no noticeable side effects and good results
In context ↗ - staying within movement limits · Helped
I've been taking things super easy since LC and have been slowly improving for the past 8 months
In context ↗ - nicotine patches · Helped a lot
Nicotine patches brought me from what I would say is 30% to 60% which is a pretty big improvement
In context ↗ - guanfacine · Helped
guanfacine has helped me a bunch too actually! I started it a while after nicotine but it’s really helpful with the rest of my ADHD symptoms as well as some LC symptoms
In context ↗
Approaches: Other drugs and medicines · 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 3 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 |
|---|---|---|---|
| October 2023 | got long COVID after testing positiveI stopped taking it when I tested positive ... before getting LC in October of 2023In context ↗ | Not stated | |
| January 2024 | started nicotine patch protocol and felt it helping many symptomsI’m trying the patch protocol currently and it feels quite dissimilar, and has been really helpful for many of my symptoms, especially neurological and PEM-related ones, which feels hugeIn context ↗ | Moderate | Nicotine patches |
| June 2024 | slow steady improvement; could work from home and do chores without PEMI can now comfortably work from home, do chores, etc without PEM or other LC symptomsIn context ↗ | Mild | Nicotine patches |
| 2024-10-24 | baseline roughly doubled; back to most activities while maskingNicotine patches brought me from what I would say is 30% to 60% ... am able to go to museums, cafes and bars (with a sip valve) and do 99% of the things I love | Mild | Nicotine patches |
Adverse events
- Stimulants (unspecified)“I react okay to stimulants, though the anxiety can make it a tough onset” In context ↗ Mood or psychiatric effects
- Stimulants (unspecified)“my potentially neurotoxic long-term stimulant meds make my heart rate skyrocket” In context ↗ Heart rhythm problems
- Stimulants (unspecified)“Caffeine raises my heart rate and blood pressure much more than the patch does, same with stimulant meds” In context ↗ Heart rhythm problems
- Stimulants (unspecified)“as well as messing with my sleep” In context ↗ Insomnia from treatment
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
reduced PEM and brain fog
In context ↗ - Brain fog
they took away a lot of brain fog
In context ↗ - Mast cell (MCAS) & allergies
With my specific body and cocktail of MCAS and PEM issues
In context ↗ - Sleep problems
improved my sleep (which is super important for healing)
In context ↗ - Hair loss
1mg of finasteride for a few years to stop/slow hair loss
In context ↗
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