Severe ME/CFS, bedbound apart from bathroom, remained severe after Topamax and Midodrine
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 15 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
I have severe mecfs, which has caused me to become bedbound apart from the bathroom.
In context ↗ - At worst: Severe
I have severe mecfs, which has caused me to become bedbound apart from the bathroom.
In context ↗ - Now: No benefit
Im severe and also have one, only one I can use independently.
In context ↗
Read from 6 of their posts and comments; links to the 6 this page draws on
Summary
The user had severe ME/CFS and POTS and was bedbound apart from the bathroom, lying on their side all day. Their sleep problem had gone on 15 years and could leave them awake for up to four days unmedicated. Topamax for migraines brought significant benefits but reduced their tension or muscle tone, so their hypermobile shoulder and knees subluxed repeatedly. Midodrine calmed them for a few hours then triggered a mental health crisis as it wore off. They remained severe.
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What they tried
Also tried
Their words about each treatment
- midodrine · Worse
It makes me feel quite calm for about 4 or 5 hours but once it wears off it basically turns into a mental health crisis.
In context ↗ - various sleep meds · No change
Can be sedated for hours (various sleep meds over the years) but I dont fall asleep until I am hit with this sleep tsunami
In context ↗ - Topamax · Helped
Surprisingly topamax has been really helpful for me
In context ↗ - autobrush · Helped
another expensive item autobrush has made it possible for me to even brush my teeth
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. The chart starts 14.4 years after onset: the story doesn’t say how ill they were before that. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| onset | severe ME/CFS and POTS, eventually bedbound apart from the bathroomI have severe mecfs, which has caused me to become bedbound apart from the bathroomIn context ↗ | Not stated |
| 2026-03-19 | Topamax for migraines gave significant benefits but loosened their jointsIt has had many significant benefits to me, however it has reduced my tension or possibly muscle tone and my shoulder has been subluxing multiple times a dayIn context ↗ | Severe |
| 2026-10-10 | still severe, lying down all day, brushing teeth only some daysI lay on my side all dayIn context ↗ | Severe |
Adverse events
- Midodrine“It makes me feel quite calm for about 4 or 5 hours but once it wears off it basically turns into a mental health crisis.” In context ↗ Mood or psychiatric effects
- Topiramate (Topamax)“it has reduced my tension or possibly muscle tone and my shoulder has been subluxing multiple times a day” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- POTS & dysautonomia
Severe mecfs and pots, low blood pressure laying down
In context ↗ - Sleep problems
Can experience no sleep up to 4 days unmedicated
In context ↗ - Headaches & migraine
i started Topamax for my migraines
In context ↗ - Light & noise sensitivity
meaning I only need the ear plugs when im extra sound sensitive
In context ↗ - Muscle weakness
i have poor strength which is why i was being so hard on my joints in the first place
In context ↗