ME/CFS
Outcome unclearIll for 4 years
Post-COVID ME/CFS with POTS, trying low-dose Mestinon and other drugs
- Condition
- ME/CFS
- At worst
- Not stated
- Ill for
- 4 years
- Last post
- Aug 2026
In their words
- Condition: ME/CFS
I have **post-COVID ME/CFS**, as well as **POTS, HSD, HPA-axis dysfunction, lipedema, and Crohn’s disease**.
In context ↗ - Began after: COVID
post-COVID ME/CFS
Read from 6 of their posts and comments; links to the 5 this page draws on
Summary
An Austrian Reddit user who had post-COVID ME/CFS since 2022, with POTS, HSD, Crohn's and lipedema, reacted strongly to low doses of Mestinon (10 mg) and pregabalin (12.5 mg), and had some side effects with 0.1 mg of Abilify; vagus nerve stimulation increased facial tingling. Montelukast eased breathing problems but was stopped for bad side effects, and 10 mg of DHEA caused severe fatigue; stopping it left them a little better. They stayed on LDN, desloratadine and adalimumab.
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What they tried
Also tried
Their words about each treatment
- vagus nerve stimulation · Worse
I tried vagus nerve stimulation, it only increased the tingling sensation around the face :/
In context ↗ - LDN · Not said
LDN, desloratadine, and adalimumab
In context ↗ - pregabalin · Worse
12.5 mg of pregabalin
In context ↗ - montelukast/ Singulair · Worse
which were resolved by montelukast/ Singulair therapy
In context ↗ - LDA · Worse
I had some site effects with 0.1mg
In context ↗ - DHEA · Worse
Instead of noticing more energy or any positive effect, it made me feel **extremely tired and exhausted**.
In context ↗ - Mestinon / pyridostigmine · Not said
I also reacted strongly to only **10 mg of Mestinon (pyridostigmine)** and **12.5 mg of pregabalin**.
In context ↗
Their path
They say too little about how ill they were at each step to draw it on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened |
|---|---|
| 2022 | post-COVID ME/CFS onsetAs I am affected since 2022In context ↗ |
| 2026-08-20 | 10 mg DHEA brought on severe fatigue and exhaustionextremely tired and exhaustedIn context ↗ |
| 2026-08-21 | stopped DHEA and felt a little betterAlready stopped it.. feeling a little betterIn context ↗ |
Adverse events
- Vagus nerve stimulation“I tried vagus nerve stimulation, it only increased the tingling sensation around the face :/” In context ↗ Side effects
- DHEA“Instead of noticing more energy or any positive effect, it made me feel **extremely tired and exhausted**.” In context ↗ Made symptoms worse
- Mestinon / pyridostigmine“I also reacted strongly to only **10 mg of Mestinon (pyridostigmine)** and **12.5 mg of pregabalin**.” In context ↗ Side effects
- Pregabalin (Lyrica)“I also reacted strongly to only **10 mg of Mestinon (pyridostigmine)** and **12.5 mg of pregabalin**.” In context ↗ Side effects
- Montelukast / Singulair“I stopped the therapy due to really bad side effects.” In context ↗ Side effects
- Low-dose Abilify / aripiprazole“Good luck with LDA. I had some site effects with 0.1mg” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Gut problems
I have crohn's disease for over 13 years. It is quite stable though.
In context ↗ - POTS & dysautonomia
POTS, HSD, HPA-axis dysfunction
In context ↗ - Breathlessness
I have breathing issues and a blocked nose, which were resolved by montelukast/ Singulair therapy.
In context ↗ - Neuropathy & tingling
it only increased the tingling sensation around the face
In context ↗