ME/CFS brain fog, barely able to clean house, now 80% of normal after Mendi biofeedback
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- Not stated
- Last post
- Aug 2024
In their words
- Condition: ME/CFS
my CFS symptoms had vanished
In context ↗ - At worst: Moderate
I have the kind of brain fog that makes it nearly impossible for me to even clean my house.
In context ↗ - Now: Much better
I'd say I'm at about 80%
In context ↗ - Began after: nothing they could name
I've had my CFS probably since I was 4.
In context ↗
Read from 24 of their posts and comments; links to the 12 this page draws on
Summary
They had had CFS since about age 4, with brain fog so bad they could barely clean their house. Tamoxifen they took themselves for low testosterone put them into remission for three weeks in 2020, when they hiked 20 miles every other day; symptoms returned around a corticosteroid shot and a bupropion refill. Later tamoxifen trials worked temporarily, self-injected Epoetin made them feel fantastic, and a Mendi biofeedback device left them at about 80% of normal.
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What they tried
What they credit
Also tried
Their words about each treatment
- tamoxifen · Helped a lot
The chronic fatigue symptoms were relieved about two or three weeks after I would start taking it.
In context ↗ - bupropion (Wellbutrin) · Worse
After I started taking the bupropion my CFS came back even worse for a few weeks.
In context ↗ - spironolactone · No change
I took spironolactone for a few days on the tamoxifen. My low testosterone depression came back but not my CFS symptoms.
In context ↗ - corticosteroid shot · Not said
All year I had assumed that it was the corticosteroid shot that made my made my symptoms return.
In context ↗ - armodafinil · Not said
just 50 mgs of armodafinil with some coq10
In context ↗ - n-acetylcysteine · Helped
took some n-acetylcysteine the night before. I went to work the next day with absolutely no hangover
In context ↗ - Epoetin · Helped a lot
I gave myself regular injections for almost 2 months and I felt fantastic.
In context ↗ - hyperbaric · Helped
besides heavy free weight training, hyperbaric and high altitude training, I have found something that feels and works exactly like all the things that I have tried that have worked
In context ↗ - high altitude training · Helped
If you go up into high altitudes ... those symptoms go away
In context ↗ - heavy free weight training · Helped
It feels exactly like what tamoxifen, high altitude, weightlifting and Epoetin did two diminish my avolition symptoms.
In context ↗ - Mendi · Helped a lot
Around month three, it was wild! I could do things that I had to force myself to do all the time without forcing my brain to do it.
In context ↗
Approaches: Hyperbaric & oxygen · Exercise and activity · Hormones & thyroid
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 |
|---|---|
| since I was 4 | CFS began in childhoodI've had my CFS probably since I was 4.In context ↗ |
| 2021 | brain fog made cleaning the house nearly impossibleI have the kind of brain fog that makes it nearly impossible for me to even clean my house.In context ↗ |
| 2020 | overnight remission after running out of bupropion while on tamoxifenI woke up one morning and my CFS symptoms had vanished ... I started hiking 20 miles every other day just because I could.In context ↗ |
| 2020 | symptoms returned around a corticosteroid shot and bupropion refillThis was around the time that my symptoms started to return.In context ↗ |
| 2021-05-10 | first dose of second tamoxifen trial gave energy and cleared brain fogJust woke up this morning with a weird amount of energy and no brain fog after taking my first dose last night.In context ↗ |
| 2021-05-16 | photosensitivity after one pint of beer on tamoxifenI had one pint of beer last night at the bar and now I'm laying in a pitch-dark room because my eyes are so photosensitive.In context ↗ |
| 2024-08-14 | about 80% of normal using the Mendi neurofeedback deviceIt's not 100% perfect but I'd say I'm at about 80%In context ↗ |
Adverse events
- Bupropion (Wellbutrin)“After I started taking the bupropion my CFS came back even worse for a few weeks.” In context ↗ Made symptoms worse
- Tamoxifen“when my doctor pulled me off cold turkey from tamoxifen after over three months of use I got to experience full on massive PMS symptoms” In context ↗ Withdrawal problems
- Spironolactone“I took spironolactone for a few days on the tamoxifen. My low testosterone depression came back but not my CFS symptoms.” In context ↗ Mood or psychiatric effects
Symptoms mentioned
Their words about their symptoms
- Brain fog
I wasn't as foggy, my memory was better
In context ↗ - Gut problems
all of my digestive problems have cleared up
In context ↗ - Light & noise sensitivity
my eyes are so photosensitive
In context ↗ - Anxiety & low mood
about three and a half years ago was researching ways to legally kill themselves
In context ↗
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