Long COVID brain fog and breathlessness, unable to work, much better after brain retraining
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 21 months
- Last post
- Nov 2022
In their words
- At worst: Moderate
Still can’t work 9 months after infection.
In context ↗ - Now: Much better
I’m 80% recovered and on my way to be 100% recovered.
In context ↗
Read from 19 of their posts and comments; links to the 10 this page draws on
Summary
After a COVID infection in March 2021, Fjord 48897 had long COVID with breathlessness, brain fog, tinnitus and sound sensitivity, and could not work nine months in. A Dutch ergo therapist's Epiphora method raised energy to about 60% until a relapse; a three-day Dutch brain-retraining course based on the Lightning Process then left them 80% recovered by November 2022. A second infection that year worsened symptoms for a while.
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What they tried
What they credit
Also tried
Their words about each treatment
- Vitamins, minerals and supplements · Not said
I started taking a slew of vitamins, minerals, supplements
In context ↗ - Drinking just water · Not said
drinking just water
In context ↗ - Physical training at fysio therapist · Not said
I started with cycling indoors, lowest resistance for five minutes. Then five minute break, then another five minutes.
In context ↗ - Ergo therapy · Helped
Ergo therapy (at least that’s what it’s called in The Netherlands) helps me make sure I don’t overdo it.
In context ↗ - CBD · Not said
I use it on a daily basis. Still recovering with long Covid. I can’t say whether it works or not, since I haven’t stopped.
In context ↗ - Weed and hash · Helped
So enter weed and hash. Smoked some and I was pretty much fine with just sitting around. So it helped me in that way.
In context ↗ - Truffels (psilocybin) microdosing · Worse
It didn’t do anything for me. I tried for about three weeks. Increasing the dose from 1,0 to 2,0 doses over the course of two weeks. No effect whatsoever.
In context ↗ - Breathing exercises (Patrick McKeown) · Helped
he has some very easy and straightforward techniques that helped me ... calm and normalize my disturbed breathing pattern, air hunger, constant anxiety
In context ↗ - CBT · Not said
(CBT doesn’t do this by the way. I did that first and after that psychotherapy.
In context ↗ - Psychotherapy (schema therapy) · Helped
Therapy helped me identify what was behind those behaviors, mostly trauma.
In context ↗ - Epiphora method · Helped a lot
after two weeks of three times a day (15-15-10 minutes) I regained around 40% of my energy
In context ↗ - Ander Leven training (Dutch version based on the lightning process) · Helped a lot
Now six weeks after the training I can say with confidence: I’m 80% recovered and on my way to be 100% recovered.
In context ↗
Approaches: CBT & mindset
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| March 2021 | COVID infection, acute illness with high feverBefore I fell ill with COVID, march 2021 ... I was quite ill, high fever, shortness of breathIn context ↗ | Moderate | |
| 2021-12-27 | nine months in, still unable to work and repeatedly overdoing limitsStill can’t work 9 months after infection.In context ↗ | Moderate | |
| 2022-01-13 | slow build-up of indoor exerciseNow I’m at rowing 20 minutes /4km and cycling 25 minutes at 6/10 resistance.In context ↗ | Moderate | Graded rehab and self-made programmes |
| 2022-03-26 | significant relapse, unable to travel muchI had quite a significant relapse and wasn’t able to travel muchIn context ↗ | Moderate | |
| mid 2022 | Epiphora method raised energy to about 40%, later 60%after two weeks of three times a day (15-15-10 minutes) I regained around 40% of my energyIn context ↗ | Moderate | |
| mid 2022 | plateaued at 60% then relapsedreaching about 60%, until I plateaud ... And then I relapsed again.In context ↗ | Moderate | |
| October 2022 | three-day Dutch brain-retraining course based on the Lightning ProcessNow six weeks after the training I can say with confidence: I’m 80% recoveredIn context ↗ | Mild | Lightning Process |
| 2022-11-27 | about 80% recovered, still some symptomsI’ve learned to focus on other things now.In context ↗ | Mild |
Adverse events
- “I tried micro dosing with truffels… no effect whatsoever. It just made me nervous (like drinking five cups of coffee does)” In context ↗ Side effects
- Graded rehab and self-made programmes“I had fall backs, like couldn’t train for a couple of weeks due to being too tired.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Breathlessness
Shortness of breath.
In context ↗ - Brain fog
brain fog when under stress
In context ↗ - Light & noise sensitivity
My symptoms are tinnitus, sensitive to sounds
In context ↗ - Post-exertional malaise
Long recovery times after physical or mental exercises.
In context ↗ - Sleep problems
Terrible sleep quality.
In context ↗ - Pain & fibromyalgia
Muscle and joint pains.
In context ↗ - Anxiety & low mood
constant anxiety
In context ↗
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