Long COVID with brain fog, POTS and PEM, somewhat better with more normal days
- Condition
- Long COVID
- At worst
- Mild (working or studying, with limits)
- Ill before improving or writing
- 18 months
- Last post
- Nov 2023
In their words
- Condition: Long COVID
My original infection was May 2022 so it's been a slow uphill recovery and it evolves.
In context ↗ - At worst: Mild
In the first 6-9 months it was an everyday thing where walking up inclines, or too fast or too long would give me a rapid heart rate and rapid breathing or feeling faint.
In context ↗ - Now: Somewhat better
Now I'm better with more normal days when it comes to those symptoms. ... But once in awhile I'll get just get a regressive Long Covid day where it all comes back randomly.
In context ↗ - Began after: COVID
When I got omicron last year is when everything went haywire
In context ↗
Read from 17 of their posts and comments; links to the 15 this page draws on
Summary
After a probable mild case from an early-pandemic infection, long COVID worsened sharply with an Omicron infection in May 2022: brain fog, POTS, PEM, neuropathy, severe RA worsening and acute suicidality, after an earlier Alpha infection caused a panic attack and a raised resting heart rate. Ketamine infusions began within a week and stopped the suicidal thoughts after the first dose; beta blockers were used for the heart rate. By September 2023 they described a slow uphill recovery with more normal days, though occasional regressive days brought symptoms back.
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What they tried
Also tried
Their words about each treatment
- ketamine · Helped a lot
I ended up getting treatment with ketamine infusions. It is something that make the thoughts stop very quickly. And it helped me a lot.
In context ↗ - modafinil · Helped
What's helped me the most is modafinil ... It's helped me the most as far as not losing my train of thought and being slightly more productive.
In context ↗ - metoprolol · Helped
For me taking metoprolol is for my exertional symptoms and for my heart muscle. So even though I get subpar symptom resolution, I think of my heart muscle as 'getting a break' as well.
In context ↗ - Turmeric · Not said
I've been taking 2g per day for years for rheumatoid arthritis.
In context ↗ - dlpa · Helped
It definitely helps for pain. I have RA and low dose dlpa definitely reduces pain in a non euphoric way.
In context ↗ - smartwatch that gives me a sleep score · Helped
I use a smartwatch that gives me a sleep score (including a deep sleep score). It’s helped me ALOT in figuring out my sleep routine and what helps/harms it.
In context ↗ - melatonin · Helped
I found that low dose melatonin (<1mg), CBN/THC, and low dose clonazepam gives me great sleep
In context ↗ - exercise · Helped
When I exercise, my sleep score goes up.
In context ↗ - guanfacine · Worse
I've been on it pre LC and after about 3-6 months I noticed anhedonia so I stopped.
In context ↗ - restasis · Not said
dry eyes requiring restasis
In context ↗ - Paxlovid · Helped a lot
I took it and am sure it prevented me from being hospitalized.
In context ↗ - nattokinase · Worse
I stopped it and the chills went away. Was only on natto 100mg/d.
In context ↗ - cymbalta · Helped
found a lot of success with the cymbalta/bupropion combo pre-Covid
In context ↗ - COVID vaccination as treatment · Not said
I got my 2nd booster and had what I’d call a ‘flare’ of LC ... It took a few weeks to get back to my baseline state
In context ↗
Approaches: Antivirals · Other drugs and medicines · Stimulants
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 |
|---|---|---|
| May 2022 | COVID (Omicron) infection; everything went haywireWhen I got omicron last year is when everything went haywireIn context ↗ | |
| May 2022 | acutely suicidal; afraid and wanted to check into inpatientPost Covid I was acutely suicidal for the first time everIn context ↗ | |
| June 2022 | ketamine infusions; suicidal thoughts stopped after the first doseAfter the first dose I no longer felt like killing myself.In context ↗ | Ketamine |
| October 2022 | LC flare after 2nd booster given with the flu shotI got my 2nd booster and had what I’d call a ‘flare’ of LCIn context ↗ | |
| September 2023 | slow uphill recovery with more normal days and occasional regressive LC daysNow I'm better with more normal days when it comes to those symptoms.In context ↗ |
Adverse events
- Nattokinase“Yes, I have been feeling usually cold since I started nattokinase a week ago and finally searched here for the symptom.” In context ↗ Side effects
- COVID vaccination as treatment“I got my 2nd booster and had what I’d call a ‘flare’ of LC ... It took a few weeks to get back to my baseline state” In context ↗ Autoimmune or inflammatory flare
- Modafinil / armodafinil“if I got on a mental fixation (let’s say on a trivial subject on Reddit) I would lose hours to mindless reading” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
POTS, PEM, neuropathy
In context ↗ - Brain fog
Since the summer I've struggled with anhedonia and poor cognition/memory.
In context ↗ - POTS & dysautonomia
rapid heart rate and rapid breathing or feeling faint
In context ↗ - Heart symptoms & palpitations
elevated resting HR in the 100's thereafter for a year until I got beta blockers
In context ↗ - Neuropathy & tingling
brain fog, acutely suicidal, POTS, PEM, neuropathy
In context ↗ - Anxiety & low mood
I have had depression for most of my life
In context ↗ - Pain & fibromyalgia
It definitely helps for pain. I have RA
In context ↗ - Sleep problems
low dose melatonin (<1mg), CBN/THC, and low dose clonazepam gives me great sleep
In context ↗
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