ME/CFS with brain fog and POTS, now somewhat better with guanfacine and Ayurvedic massage
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Jun 2025
In their words
- At worst: Severe
crashed from having to sit up for 1 hour
In context ↗ - Now: Somewhat better
so it may be a mix of it all, but I am much more functional
In context ↗
Read from 5 of their posts and comments; links to the 4 this page draws on
Summary
Otter 14144 has ME/CFS with brain fog and POTS, and crashed from sitting up for an hour during therapy. Sauna caused a collapse (though NIR helped), therapy and most psychiatric drugs didn't help, while guanfacine, Ayurvedic massage and p5p left them much more functional, with brain fog mostly gone and longer standing tolerance. They said guanfacine was no miracle drug and credited a mix of approaches, though they called acupuncture placebo.
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What they tried
What they credit
Also tried
Their words about each treatment
- Guanfacine · Helped
I am on Guanfacine and it helps: with brain fog, deeper sleep, more presence during conversations, able to stand up for longer etc.
In context ↗ - Acupuncture · No change
I think acupuncture is placebo for me, too.
In context ↗ - Random supplements and herbal tinctures · No change
Random supplements and herbal tinctures. ... else all wasted money
In context ↗ - Fructoborat · Helped
I had herx type reactions on Fructoborat but it seemed to "clear something" eventually.
In context ↗ - Sauna · Worse
Sauna: collapsed
In context ↗ - NIR (near infrared) · Helped
NIR did help, on belly and liver daily
In context ↗ - Therapy · Worse
Therapy: humiliating and annoying and crashed from having to sit up for 1 hour.
In context ↗ - SSRI, SNRI, Wellbutrin · Worse
almost all psycho-active medication: SSRI, SNRI, Modafinil, Methylphenidate, Vyvanse, Wellbutrin, Strattera etc.
In context ↗ - Somatic work · Worse
somatic work/Yoga/moving anyway/pretending I don't have it/putting up with toxic people all made things worse
In context ↗ - Ayurvedic stuff · Helped
Ayurvedic stuff what addresses psychological issues. The only ones that helped were the ones addressing liver health.
In context ↗ - Prednisone · Worse
The worst: prednisone.
In context ↗ - Ayurvedic body massage (Brahmi Thailam) and scalp massage · Helped
scalp massage, daily ayurvedic (Brahmi Thailam) body massage (can't pay for it so taught myself), etc is improving POTS etc further
In context ↗
Approaches: Alternative therapies · Other drugs and medicines
Their path
What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | After |
|---|---|---|
| 2025-06-25 | much more functional on guanfacine plus Ayurvedic massage, acupuncture and p5pit may be a mix of it all, but I am much more functionalIn context ↗ | Guanfacine |
| 2025-06-25 | brain fog mostly gone, can stand up longer and stay present in conversationsbrain fog disappeared mostlyIn context ↗ | Guanfacine |
Adverse events
- Hyperthermia and sauna“Sauna: collapsed (NIR did help, on belly and liver daily).” In context ↗ Low blood pressure or fainting
- CBT and psychotherapy“Therapy: humiliating and annoying and crashed from having to sit up for 1 hour.” In context ↗ Made symptoms worse
- Bupropion (Wellbutrin)“almost all psycho-active medication: SSRI, SNRI, Modafinil, Methylphenidate, Vyvanse, Wellbutrin, Strattera etc.” In context ↗ Made symptoms worse
- Modafinil / armodafinil“almost all psycho-active medication: SSRI, SNRI, Modafinil, Methylphenidate, Vyvanse, Wellbutrin, Strattera etc.” In context ↗ Made symptoms worse
- Methylphenidate (Ritalin, Concerta), Lisdexamfetamine (Vyvanse, Elvanse)“almost all psycho-active medication: SSRI, SNRI, Modafinil, Methylphenidate, Vyvanse, Wellbutrin, Strattera etc.” In context ↗ Made symptoms worse
- Trauma work (EFT, EMDR, TRE)“somatic work/Yoga/moving anyway/pretending I don't have it/putting up with toxic people all made things worse.” In context ↗ Made symptoms worse
- Meditation, yoga, breathwork“somatic work/Yoga/moving anyway/pretending I don't have it/putting up with toxic people all made things worse.” In context ↗ Made symptoms worse
- Everyday exercise and activity“somatic work/Yoga/moving anyway/pretending I don't have it/putting up with toxic people all made things worse.” In context ↗ Made symptoms worse
- Corticosteroid pulses“The worst: prednisone.” In context ↗ Made symptoms worse
- Other minerals and mixes“I had herx type reactions on Fructoborat but it seemed to "clear something" eventually.” In context ↗ Herx / die-off reaction
Symptoms mentioned
Their words about their symptoms
- Brain fog
brain fog disappeared mostly
In context ↗ - POTS & dysautonomia
improving POTS etc further
In context ↗ - Post-exertional malaise
crashed from having to sit up for 1 hour
In context ↗
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