Long COVID
Severe → near normalIll 18 months before improving or writingNeeds ongoing treatment
Severe neurological long COVID, now 90-95% back after N95 masking and cognitive rehab
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 18 months
- Last post
- Jul 2023
In their words
- Condition: Long COVID
I became ill with severe neurological Long Covid symptoms in January 2022
In context ↗ - At worst: Severe
One time I struggled to get up from the fall or even to crawl. My husband got scared and started to seriously worry I would die of it.
In context ↗ - Now: Near normal
I recovered to 90-95% of my normal cognitive function.
In context ↗ - Began after: COVID
when the train went across Texas a whole bunch of people got on that were all coughing violently. A few days later I got a splitting headache that would not go away and lasted for days, then I got rheumatoid arthritis.
Read from 63 of their posts and comments; links to the 26 this page draws on
Summary
Meadow 98651 developed severe neurological long COVID in January 2022, with brain fog, falling, weakness and memory loss resembling early dementia. Strict N95 masking to avoid all COVID exposure and self-directed cognitive rehabilitation brought them back to about 90-95% of their former function; a biologic for post-COVID arthritis also helped. Air pollution/AQI affected their symptoms, and the biologic cost $10k per injection without insurance.
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What they tried
Also tried
strict non-exposure / masking with N95s· Helped a lotself-directed cognitive rehabilitation· Helped a lotZen meditation and box breathing· Helpedpropranolol· HelpedSulfasalazine· Helpedphysical therapy for TMJ· Helpedinversion therapy· Helpednicotine pouch· Helped · wore offbeet juice and beet powder· Helpedcutting screen time· Helpedpsychiatric medication· Worsepsychiatrist sessions· Not saidwalks to build up fitness· Not saidsmell training· Not saidMCT oil· Not saiddiet and nutrition· Not said
Their words about each treatment
- strict non-exposure / masking with N95s · Helped a lot
After six months of very strict masking, I recovered.
In context ↗ - Tremfya · Helped a lot
after taking Tremfya for only two months the brain fog and memory impairment disappeared
In context ↗ - self-directed cognitive rehabilitation · Helped a lot
The cognitive rehab activities have returned my mental functioning to 90-95% normal (previous to Covid).
In context ↗ - Zen meditation and box breathing · Helped
I use a metronome set to 60 bpm and do it for ten-minute sessions, now and then.
In context ↗ - propranolol · Helped
The only thing that worked for me was taking propranolol.
In context ↗ - psychiatric medication · Worse
The psychiatric medication is known to cause memory impairment! I tapered off it myself, quit the psychiatrist and the memory impairment is gone also.
In context ↗ - psychiatrist sessions · Not said
attended sessions for a year and kept them updated on my progress seeking diagnosis, etc.
In context ↗ - Sulfasalazine · Helped
The arthritis was under control, but episodic brain fog was still terrible.
In context ↗ - magnesium · Helped
Magnesium and Vitamin B1 were mentioned a lot and I have seen good results with that.
In context ↗ - iron · Helped
Getting it in pill form was giving me a hard time, so I started eating more lentil spinach soup and saw improvements.
In context ↗ - physical therapy for TMJ · Helped
I also did physical therapy to address pre-existing TMJ disorder and those exercises help reduce the tinnitus further.
In context ↗ - inversion therapy · Helped
I did this during one of the spells of weakness and the symptoms went away.
In context ↗ - nicotine pouch · Helped
The brain fog cleared for two weeks, but arthritis got a bit worse.
In context ↗ - walks to build up fitness · Not said
Previous to this I've been going for walks to build up basic fitness.
In context ↗ - beet juice and beet powder · Helped
The juice had a good effect after about a week for me.
In context ↗ - smell training · Not said
I've tried other things too, like smell training, which is fun if nothing else
In context ↗ - MCT oil · Not said
some people are recommending MCT oil to fuel the brain as an alterative to glucose, which I'm also trying at the moment
In context ↗ - diet and nutrition · Not said
For that, I'm concentrating on diet and nutrition for now
In context ↗ - cutting screen time · Helped
I took a vacation and left my laptop at home, it went away entirely.
In context ↗
Approaches: Biologics & antibodies · Supplements
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 |
|---|---|---|
| January 2022 | severe neurological long COVID began with brain fog, falling and weaknessI became ill with severe neurological Long Covid symptoms in January 2022, with brain fog, falling, weakness, etc.In context ↗ | Severe |
| March 2022 | memory impairment appeared and worsened over timeThe first incident of memory impairment happened in MarchIn context ↗ | Severe |
| November 2022 | condition worsened, rheumatoid arthritis and psoriasis diagnosed; neurologist called it a functional disorderafter two years of Long Covid my conditioned worsened (before I began masking strictly) and I got an autoimmune diseaseIn context ↗ | Severe |
| June 2023 | wildfire smoke triggered fatigue, ataxia, visual distortions and verbal impairmentI was 90-95% recovered, but am now having immune reactions to the wildfire smoke pollutionIn context ↗ | Moderate |
| July 2023 | recovered from the movement disorder, still avoiding smoke and COVID exposureThat is what I did, and I fully recovered from the movement disorder.In context ↗ | Near normal |
Adverse events
- Nicotine patches“I did one nicotine pouch, tracked my blood pressure during (it went way up).” In context ↗ Side effects
- Nicotine patches“The brain fog cleared for two weeks, but arthritis got a bit worse.” In context ↗ Autoimmune or inflammatory flare
- “The psychiatric medication is known to cause memory impairment! I tapered off it myself, quit the psychiatrist and the memory impairment is gone also.” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessGut problemsHeadaches & migraineMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaTinnitusVision problems
Their words about their symptoms
- Brain fog
the brain fog went away enough for me to work on cognitive rehabilitation on my own
In context ↗ - Muscle weakness
the movement disorder which was characterized by cataplexy-type falls, weakness and temporary paralysis
In context ↗ - POTS & dysautonomia
Muscle atrophy, definite signs of bone density loss, dysautonomia, anemia
In context ↗ - Headaches & migraine
A few days later I got a splitting headache that would not go away and lasted for days
In context ↗ - Vision problems
spells of altered consciousness with visual distortions and agitation
In context ↗ - Tinnitus
visual distortions, etc. along with tinnitus
In context ↗ - Gut problems
I would have neurologic symptoms, gut disturbance and joint pain
In context ↗ - Anxiety & low mood
I still often wish I had died because in order to preserve my brain function, I have to give up so many things I enjoyed in life
In context ↗ - Breathlessness
I often have drowsiness, confusion, weakness, shortness of breath, etc.
In context ↗
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