ME/CFS
Outcome unclear
ME/CFS with PEM and dizziness, no improvement on Effexor or amantadine
- Condition
- ME/CFS
- At worst
- Not stated
- Ill for
- Not stated
- Last post
- Jul 2024
In their words
- Condition: ME/CFS
My neurologist ended up diagnosing me with ME/CFS but left the PPPD diagnosis on my chart as well for now.
In context ↗ - Says they never had: Pain & fibromyalgia
totally dismissed MECFS at first because I don’t have chronic pain (yet)
Read from 5 of their posts and comments; links to the 4 this page draws on
Summary
A Reddit user in r/cfs described suspected ME/CFS with post-exertional malaise and dizziness, which a neurologist diagnosed as ME/CFS while leaving a PPPD diagnosis on their chart. Exercise put them down for an entire day. Effexor did nothing and caused a frustrating side effect, so they stopped it, and amantadine gave no noticeable difference after over a month. They described no improvement.
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What they tried
Their words about each treatment
- vestibular therapy · Not said
I did vestibular therapy a while back, and the therapist said I wouldn’t benefit from it because it wasn’t behaving like a vestibular issue.
In context ↗ - Effexor · No change
He wanted me to keep taking the Effexor even though it wasn’t doing anything, but I stopped taking it. I was having a frustrating side effect with no benefit
In context ↗ - Amantadine · No change
Yes, I’ve been on it for over a month but haven’t really noticed much of a difference, if any.
In context ↗
Their path
They say too little about how ill they were at each step to draw it on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened |
|---|---|
| — | suspected ME/CFS; diagnosed by neurologistI’ve suspected for a while that I have ME/CFSIn context ↗ |
| 2024-05-10 | still ill; exercise puts them down for a day; amantadine over a month with no differenceI’ve been on it for over a month but haven’t really noticed much of a difference, if any.In context ↗ |
Adverse events
- Venlafaxine (Effexor)“I was having a frustrating side effect with no benefit” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
Yeah, I definitely have PEM, which I kept trying to explain to the neurologist
In context ↗ - POTS & dysautonomia
my neurologist focused only on my dizziness and not on my PEM, etc.
In context ↗