Long COVID
Severe → no benefitIll for 5 yearsNeeds ongoing treatment
Long COVID with POTS and brain injury, still ill; medication for spinal fluid and vision
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill for
- 5 years
- Last post
- Oct 2025
In their words
- Condition: Long COVID
Im almost 5 years from my covid hospitalization, 4.5 since my long covid diagnosis.
In context ↗ - At worst: Severe
So many days where getting up is impossible.
In context ↗ - Now: No benefit
Im so far from recovered there are not even words.
In context ↗ - Began after: COVID
my covid hospitalization
Read from 7 of their posts and comments; links to the 6 this page draws on
Summary
Lake 84918 was hospitalised with COVID and had encephalitis and six weeks of blackness; almost five years later they were still ill. They were left with permanent brain injury, POTS, IIH, chronic insomnia and cognitive limits; 2024 knee replacements caused long flares. Medication controlled the excess spinal fluid and stopped the blackness/vision loss, but no treatment made a significant difference to their long COVID. They remained on disability, needing days of rest around activity.
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What they tried
Also tried
meds for excess fluid in the brain (IIH)· HelpedPT· Worsecoffee· WorseOther surgery (adrenal, lung, venoplasty)· Worsetwo knee replacements· Much worsemedications for knee replacement surgeries· Not saidall the antidepressants· Not saidtherapy· Not said
Their words about each treatment
- meds for excess fluid in the brain (IIH) · Helped
I have to take meds for that now ... The blackness has gone away.
In context ↗ - two knee replacements · Much worse
recovering from them felt so much worse because it caused flare after flare after flare
In context ↗ - PT · Worse
the hour long PT just makes me non functional
In context ↗ - medications for knee replacement surgeries · Not said
I was on tons of medications for various things required for these surgeries.
In context ↗ - all the antidepressants · Not said
Im in therapy and on all the antidepressants
In context ↗ - coffee · Worse
I started drinking coffee in the mornings ... The headaches totally not worth it.
In context ↗
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 |
|---|---|
| onset | COVID hospitalisation with encephalitis and six weeks of blacknessI lost 6 weeks of my life, just blackness.In context ↗ |
| 2024-01-10 | medication for excess brain fluid stopped blackouts and vision loss; POTS dizziness remainedThe blackness has gone away. The dizzy stuff and other pots stuff is still there, but the complete loss of vision is gone.In context ↗ |
| fall 2024 | left and right knee replacements caused repeated long COVID flaresrecovering from them felt so much worse because it caused flare after flare after flare.In context ↗ |
| 2025-03-07 | post-exertional crash after an hour of PT and 20 minutes in a storetoday I went for an hour, stopped by one store for 20 minutes, came home ... slept for 7 hoursIn context ↗ |
| 2025-10-22 | still ill after almost five years; POTS, IIH and cognitive limits persistI still have autonomic dysfunction, POTS, IIH, my brain still acts concussedIn context ↗ |
Adverse events
- Other surgery (adrenal, lung, venoplasty)“recovering from them felt so much worse because it caused flare after flare after flare” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogHeadaches & migraineHeart symptoms & palpitationsPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsVision problems
Their words about their symptoms
- POTS & dysautonomia
autonomic dysfunction, POTS
In context ↗ - Brain fog
I cam’t balance my checkbook. Or read as fast as I used too. I can’t add numbers together or do percentages in my head.
In context ↗ - Sleep problems
I have chronic insomnia to the degree that I won’t sleep for days only to then sleep for two hours and start over
In context ↗ - Pain & fibromyalgia
I already had fibromyalgia and LC has made my pain so much worse.
In context ↗ - Vision problems
I have blind spots in my vision in both eyes
In context ↗ - Heart symptoms & palpitations
hearts racing issues
In context ↗ - Anxiety & low mood
I live in this blackness from feeling so hopeless all the time.
In context ↗ - Post-exertional malaise
If I over do it sometimes I will crash like today, but usually its more like 45 min to 1.5 hours.
In context ↗ - Headaches & migraine
every day I was getting a headache
In context ↗