In a wheelchair with long COVID, now much better on POTS and MCAS medicines
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Aug 2024
In their words
- Condition: Long COVID
When I healed enough physically from Long Covid to be able work
In context ↗ - At worst: Severe
By May I was in a wheelchair having constant tremors and seizures.
In context ↗ - Now: Much better
I have since somewhat mostly recovered
In context ↗ - Began after: COVID
I fully recovered after my first covid infection in Jan 2022, and then about 2 months later (March) started feeling weird.
Read from 5 of their posts and comments; links to the 4 this page draws on
Summary
Pelican 11464 recovered from a first COVID infection in January 2022, then two months later became dizzy and breathless; by May 2022 they were in a wheelchair with tremors and seizures and unable to work. Diagnosed with POTS, MCAS and vein compression, they improved greatly on medicines for POTS and MCAS, compression socks and avoiding heat. By 2024 they could manage a part-time job, though depression and PTSD followed.
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What they tried
What they credit
Also tried
Their words about each treatment
- beta blockers · Helped
When I started beta blockers, using compression socks, avoiding heat etc the DP/DR actually went away.
In context ↗ - compression socks · Helped
using compression socks
In context ↗ - medicines to treat MCAS and POTS · Helped a lot
stopped once I began medicines to treat MCAS and POTS ... Once I got treatment for these I saw a lot of improvement.
- therapy · Helped
Lots of therapy, every week, especially working through grief helped.
In context ↗
Approaches: CBT & mindset
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 |
|---|---|---|---|
| March 2022 | long COVID began with dizziness and breathlessness on exerciseabout 2 months later (March) started feeling weird. Nothing crazy, just got dizzy and breathless doing exercise one dayIn context ↗ | Mild | |
| April 2022 | breathlessness worsened and they could not workBy April I was unable to work because symptoms increasedIn context ↗ | Moderate | |
| May 2022 | in a wheelchair with constant tremors and seizuresby May I was in a wheelchair having constant tremors and seizuresIn context ↗ | Severe | |
| May 2024 | healed enough physically to work; started a part-time receptionist jobWhen I healed enough physically from Long Covid to be able work ... started off with a chill part time jobIn context ↗ | Mild | Beta-blockers (unspecified) |
| August 2024 | somewhat mostly recovered, DP/DR only when pushing limitsI have since somewhat mostly recoveredIn context ↗ | Mild |
Symptoms mentioned
Their words about their symptoms
- Breathlessness
Next week I felt like I couldn't breathe in enough air during a walk.
In context ↗ - POTS & dysautonomia
I was later diagnosed with POTS
In context ↗ - Mast cell (MCAS) & allergies
I was first diagnosed with POTS and then mast cell activation syndrome (MCAS)
In context ↗ - Anxiety & low mood
the PTSD and depression hit really bad
In context ↗
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