Long COVID
Moderate → much betterIll 18 months before improving or writing
Long COVID with insomnia and POTS, much better after two stellate ganglion blocks
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 18 months
- Last post
- Apr 2024
In their words
- Condition: Long COVID
Reinfected 9th August 2023 , long hauling since October 2022 .
In context ↗ - At worst: Moderate
When I walk let’s 1 hour or 2 hours on feet , that day all sleep very badely , when I stay in bed all day I sleep good
In context ↗ - Now: Much better
Sgb almost cured my pots and dysautonomia ( almost because I can relapse so I’m waiting)
In context ↗ - Began after: COVID
Then unfortunately I got covid in August 2022.
Read from 79 of their posts and comments; links to the 26 this page draws on
Summary
Caught COVID in August 2022 and began long hauling about three months later with insomnia, POTS, cluster headaches, body aches and anxiety. They were about 80% better by month ten, then an August 2023 reinfection brought severe insomnia, worse POTS and adrenal surges. Two stellate ganglion blocks in early 2024 greatly improved their dysautonomia; by March they walked 3 km a day, though POTS could still relapse.
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What they tried
Also tried
melatonin· Helped · wore offsteroid injection· Helped · wore offfamotidine· Helpedseroquel· HelpedIvarbadine· No changemetronidazole, amoxicillin, clarithromycin· Worsemetronidazole, amoxicillin, clarithromycin· Worsemetronidazole, amoxicillin, clarithromycin· Worsepropranolol· Worseremeron· WorsePpis· Not saidzyrtec· Not saidwalking everyday for 3 kilometres· Not said
Their words about each treatment
- metronidazole, amoxicillin, clarithromycin · Worse
The courses of heavy antibiotics made things worse on the long term .
In context ↗ - Ppis · Not said
I did the Ppis and the treatment twice and hpylori was cleared and my ulcer healed .
In context ↗ - diy fecal transplant · Helped a lot
by month 6 my ibs is gone and my appetite is back with a vengance, my head cleared up my depression gone , anxiety gone .
In context ↗ - melatonin · Helped
If I didint get melatonin I would sleep 3 hours max ... melatonin barely touch it
- zyrtec · Not said
the next night I slept 12 hours using 1 mg melatonin and zyrtec
In context ↗ - steroid injection · Helped
I think I got a 3 day relief back then when I got a steroid injection
In context ↗ - famotidine · Helped
Yes I noticed that famotidine helps
In context ↗ - propranolol · Worse
I tried propranolol , it immediately improved my heart rate , but it worsened my sleep issues , I stopped it
In context ↗ - remeron · Worse
seroquel or remeron make you feel like death next day
In context ↗ - seroquel · Helped
the only thing that helped is 50 mg seroquel
In context ↗ - Ivarbadine · No change
Ivarbadine didn’t do that much
In context ↗ - stellate ganglion block · Helped a lot
It was by far the best treatment for fight or flight and dysautonomia
In context ↗ - walking everyday for 3 kilometres · Not said
I did 2 sgb and started walking everyday for 3 kilometres , my pots is healing now
In context ↗
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 |
|---|---|---|---|
| August 2022 | mild omicron COVID-19 infection; long COVID followed two months laterI got omicron in august 2022In context ↗ | Mild | |
| October 2022 | long haul began: insomnia, POTS with high standing heart rate, cluster headache, body aches, anxietyIt started 2 months post CovidIn context ↗ | Moderate | |
| April 2023 | old symptoms came back out of the blue at month 8-9month 8 to 9 , old symptoms come back out of the blueIn context ↗ | Moderate | |
| June 2023 | about 80% better, working and eating normally again10 months in , and 80 % betterIn context ↗ | Mild | |
| August 2023 | reinfection brought severe insomnia, worse POTS, first adrenal jolts and weight lossPots got worse , insomnia came back , adrenal jolts for the first timeIn context ↗ | Moderate | |
| February 2024 | dramatic improvement in dysautonomia and fight-or-flight after two stellate ganglion blocksMy dysautonomia got much much better after 2 SgbIn context ↗ | Mild | Stellate ganglion block |
| March 2024 | walking 3 km every day; POTS healing but still flaringI did 2 sgb and started walking everyday for 3 kilometres , my pots is healing nowIn context ↗ | Mild | Stellate ganglion block |
Adverse events
- Metronidazole (Flagyl), Amoxicillin (Amoxil), Clarithromycin (Biaxin)“it helped me eating again by my anxiety become 10 folds and I developed ibs which I never had before” In context ↗ Mood or psychiatric effects
- Metronidazole (Flagyl), Amoxicillin (Amoxil), Clarithromycin (Biaxin)“they fucked my sleep 5 years ago for 2 months” In context ↗ Insomnia from treatment
- Faecal transplant (FMT)“Things got worse from a month or 2 .” In context ↗ Made symptoms worse
- Faecal transplant (FMT)“The downside is I got mono from it , but it was only fatigue for 5 months and gone .” In context ↗ Other
- Melatonin“if I did I would wake up with low mood and irritability from melatonin” In context ↗ Mood or psychiatric effects
- Quetiapine (Seroquel)“recently I noticed a twitching or a jerking movements” In context ↗ Side effects
- Mirtazapine (Remeron), Quetiapine (Seroquel)“seroquel or remeron make you feel like death next day” In context ↗ Side effects
- Propranolol (Inderal)“I tried propranolol , it immediately improved my heart rate , but it worsened my sleep issues , I stopped it” In context ↗ Insomnia from treatment
- Stellate ganglion block“The right side gave me headaches” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessGut problemsHeadaches & migraineHeart symptoms & palpitationsLoss of smell or tasteNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Sleep problems
until I got reinfected insomnia became severe
In context ↗ - POTS & dysautonomia
I greatly improved , just the pots dysautonomia is pure torture
In context ↗ - Post-exertional malaise
either rest and have no life or enjoy life and get insomnia and be breathless next day
In context ↗ - Brain fog
Brain fog and body aches vanished by 12 months
In context ↗ - Pain & fibromyalgia
body aches , joints pain
In context ↗ - Headaches & migraine
a horrible cluster headache that thankfully lasted a month
In context ↗ - Gut problems
neuropathy came back , ibs like symptoms constipation etc
In context ↗ - Neuropathy & tingling
neuropathy came back
In context ↗ - Heart symptoms & palpitations
August it was 135 , and 120 resting ( 70 previously )
In context ↗ - Breathlessness
be breathless next day
In context ↗ - Anxiety & low mood
sudden attacks of anxiety and gerd
In context ↗ - Temperature regulation
temperature dysregulation
In context ↗ - Loss of smell or taste
altered smell (ashtray)
In context ↗
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