ME/CFS
Severe → no benefitIll for 18 months
Mostly in bed with ME/CFS, still no improvement
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 18 months
- Last post
- Dec 2022
In their words
- Condition: ME/CFS
now it has turned into CFS and POTS officially diagnosed
In context ↗ - At worst: Severe
I can barely stand for 5 min without my heart pounding and brain fog, tinnitus. Literally on bed now.
In context ↗ - Now: No benefit
Nothing seems to work, i have burning sensation and tinnitus too.
In context ↗ - Began after: a vaccination
Hours after my first dose i had palpitations and dizziness
In context ↗
Read from 11 of their posts and comments; links to the 8 this page draws on
Summary
Hours after a first COVID vaccine dose in 2021, Owl 48289 developed palpitations and dizziness, later diagnosed as POTS, dysautonomia and CFS; they had never had COVID-19. In November 2021 they could barely stand five minutes and were mostly in bed, with brain fog and tinnitus. By late 2022 only mild walking helped, with burning sensations and tinnitus persisting, and beta blockers had not resolved their symptoms.
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What they tried
Also tried
Their words about each treatment
- propranolol · Worse
They did give me propranolol and an then changed to ivabradine since it made me lethargic.
In context ↗ - lyrica · Worse
they gave me lyrica and i developed a reaction to it, felt like my body was on low voltage
In context ↗ - benzos · Not said
I was also given benzos for a short period to stop the constant fight or flight response.
In context ↗ - ibuprofen · Not said
taking beta blockers n ibuprofen
In context ↗ - mild walking · Helped
only time it feels better is when i do mild walking
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 |
|---|---|---|
| 2021 | onset of palpitations and dizziness hours after first vaccine doseHours after my first dose i had palpitations and dizzinessIn context ↗ | Severe |
| 2021-11-14 | mostly in bed, could barely stand five minutesI can barely stand for 5 min without my heart pounding and brain fog, tinnitus. Literally on bed now.In context ↗ | Severe |
| 2022-12-27 | still symptomatic; only mild walking helpsDude i have POTs and all they do is ask me to take anti depresent or beta blockers. Nothing seems to work, i have burning sensation and tinnitus too.In context ↗ | Mild |
Adverse events
- Propranolol (Inderal)“They did give me propranolol and an then changed to ivabradine since it made me lethargic.” In context ↗ Side effects
- Pregabalin (Lyrica)“they gave me lyrica and i developed a reaction to it, felt like my body was on low voltage.” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogGut problemsHeart symptoms & palpitationsNeuropathy & tinglingPOTS & dysautonomiaTinnitus
Their words about their symptoms
- POTS & dysautonomia
After numerous visits to the hospital i have now been diagnosed with POTS and some sort of dysautonomia.
In context ↗ - Heart symptoms & palpitations
Hours after my first dose i had palpitations and dizziness
In context ↗ - Brain fog
I can barely stand for 5 min without my heart pounding and brain fog, tinnitus.
In context ↗ - Tinnitus
i have burning sensation and tinnitus too
In context ↗ - Neuropathy & tingling
i have burning sensation and tinnitus too. Is this not neuropathy?
In context ↗ - Anxiety & low mood
I was also given benzos for a short period to stop the constant fight or flight response.
In context ↗ - Gut problems
IBS won't go unless you stop thinking about it. This is coming from someone who is cured of it.
In context ↗