Long COVID
Moderate → near normalIll 3 years before improving or writingNeeds ongoing treatment
Long COVID with brain swelling and seizures, nearly back to normal after rest and Prozac
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 3 years
- Last post
- Dec 2023
In their words
- Condition: Long COVID
I had COVID Jan ‘20, then hospitalized for that brain swelling 1.5 years later.
In context ↗ - At worst: Moderate
I’d have to un-engage my head for awhile so that i could semi-function the rest of the day.
In context ↗ - Now: Near normal
I finally felt better and could function. I still have occasional cardiac issues or anxiety attacks out of nowhere
In context ↗ - Began after: COVID
I was sick Jan 10, 2020 for about a month
In context ↗
Read from 48 of their posts and comments; links to the 26 this page draws on
Summary
Island 77875 fell ill with COVID in January 2020 and was acutely sick for over a month, then left with arrhythmia, gut problems, brain fog and daily crying. In May 2021 they were hospitalised with a swollen brain and brain stem and seizures. They improved slowly, reaching about 80% by mid-2022, and credits months of rest and self-care plus Prozac. By late 2022 they could function, with occasional arrhythmia and anxiety remaining.
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What they tried
What they credit
Also tried
Citrucel caplets· HelpedPrep H cooling gel· HelpedNexium· Helpedprobiotic/complement of internal “scrubbers”, yoghurt· Helpedassorted vitamins / multivitamin and mineral· Helpedgetting some exercise· Helpedketo· No changeCOVID vaccination· WorsePrilosec· Not saidmultiple blood pressure meds· Not saidCPAP· Not said
Their words about each treatment
- Citrucel caplets · Helped
I ate a lot of yoghurt and took Citrucel caplets (6) to help me not feel like I was shitting fire. It helped.
In context ↗ - keeping hydrated / Pedialyte · Helped
Keeping hydrated WELL
In context ↗ - Prep H cooling gel · Helped
Prep H makes a cooling gel that helps, too.
In context ↗ - resting when necessary · Helped
Resting when necessary and not pushing yourself.
In context ↗ - Nexium · Helped
I had it for several months until pre/probiotics, Nexium and plenty of chicken noodle soup…lol.
In context ↗ - Prilosec · Not said
Prilosec for GERD
In context ↗ - probiotic/complement of internal “scrubbers”, yoghurt · Helped
I started on a probiotic/complement of internal “scrubbers”. Very very helpful.
In context ↗ - keto · No change
I was on it during this whole meltdown business. It didn’t seem to be working for me.
In context ↗ - antidepressants / Trinellix / Prozac · Helped a lot
Finally, after being on 2 antidepressants, my dr changed it to Prozac. A big change after about a month.
In context ↗ - COVID vaccination · Worse
Got vaccinated in June ‘21. Reignited symptoms in my GI tract pretty bad and a lot of inflammation throughout the body
In context ↗ - Mucinex D · Helped
It helped me with the brain fog, sinus headachey feeling.
In context ↗ - assorted vitamins / multivitamin and mineral · Helped
multivitamin and mineral, intermittent fasting/light anti inflammatory diet
In context ↗ - intermittent fasting, 24 hours+ with just water · Helped
intermittent fasting/light anti inflammatory diet
In context ↗ - multiple blood pressure meds · Not said
I have multiple blood pressure meds because of the cardiac damage.
In context ↗ - CPAP · Not said
Only thing he cares about is the CPAP and how well it’s working for me
In context ↗ - getting some exercise · Helped
You have to pull your ass out of the brain fog and anxiety by getting some exercise. It sucks but it seems to help.
In context ↗
Approaches: POTS medication · SSRIs · Diet · Other antidepressants · Other drugs and medicines · Pacing
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 |
|---|---|---|
| January 2020 | COVID-19 infection, acutely ill for over a monthI was sick Jan 10, 2020 for about a monthIn context ↗ | |
| around 3 months in, 2020 | gut pain and brain fog began liftingAfter about 3 months, the gut pain and brain fog started liftingIn context ↗ | |
| May 2021 | hospitalised for a week with swollen brain and brain stem, seizuresWhile there, I had 2 seizures. They took me to CT and turned out I had a very swollen brain.In context ↗ | |
| June–July 2021 | COVID vaccination reignited GI and inflammatory symptomsReignited symptoms in my GI tract pretty bad and a lot of inflammation throughout the bodyIn context ↗ | |
| February 2022 | slow improvement since the brain swelling, still off daysSince the swollen brain in May ‘21, I’ve slowly gotten better.In context ↗ | |
| July 2022 | rated herself about 80%I’ve finally am at about 80%.In context ↗ | |
| end of 2022 | felt better and could function after several months of rest and self-careThis would put me at the end of 2022 that I’d say I finally felt better and could function.In context ↗ | Pacing and the energy envelope |
| December 2023 | mostly normal with occasional cardiac issues, anxiety attacks and breathlessness on hard exerciseI still have occasional cardiac issues or anxiety attacks out of nowhere but for the most part, the rest of my body feels mostly normalIn context ↗ |
Adverse events
- COVID vaccination as treatment“The 2nd jab kicked my ass so bad, I was sick for 2 weeks with what felt like COVID all over again” In context ↗ Made symptoms worse
- COVID vaccination as treatment“Got vaccinated in June ‘21. Reignited symptoms in my GI tract pretty bad and a lot of inflammation throughout the body, just like the 2 times.” In context ↗ Made symptoms worse
- COVID vaccination as treatment“Vaccinated in May/Jul ‘21, lit it all back up with flu like symptoms, skin itching in areas on hands, psoriatic like arthritic symptoms, GI symptoms, etc.” In context ↗ Autoimmune or inflammatory flare
- COVID vaccination as treatment“Every time I got a shot, my lymph nodes sporadically flared up and were swollen, I felt like crap for months.” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessGut problemsHeadaches & migraineHeart symptoms & palpitationsLoss of smell or tasteNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaSleep problemsTemperature regulation
Their words about their symptoms
- Brain fog
I have brain fog-repeating myself constantly
In context ↗ - POTS & dysautonomia
Definitely had postural hypotension.
In context ↗ - Sleep problems
I also have insomnia, gut problems and generally not feeling well.
In context ↗ - Pain & fibromyalgia
arthritic changes in my joints that came on when I got sick
In context ↗ - Headaches & migraine
I start taking Mucinex-D specifically. It stops the headaches from turning into migraines
In context ↗ - Gut problems
The GI issues never went away.
In context ↗ - Breathlessness
short of breath (not too bad) when exercising strenuously
In context ↗ - Heart symptoms & palpitations
The cardiac issues I’m still dealing with. I’m having arrhythmias.
In context ↗ - Neuropathy & tingling
strips of skin that tingled and burned was at my wrist
In context ↗ - Anxiety & low mood
I still have occasional cardiac issues or anxiety attacks out of nowhere
In context ↗ - Loss of smell or taste
I lost smell and taste for about a month.
In context ↗ - Temperature regulation
hot flashes out of nowhere
In context ↗
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