ME/CFS
Very severe → no benefitNeeds ongoing treatment
100% bedbound with ME/CFS and not improving after Klonopin switch and taper
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill for
- Not stated
- Last post
- Dec 2023
In their words
- Condition: ME/CFS
I had no idea this drug could have an effect on ME symptoms.
In context ↗ - At worst: Very severe
Benzo withdrawal took me to very severe
In context ↗ - Now: No benefit
Now I have them everyday but I'm not improving. I'm also 100% bedbound.
In context ↗
Read from 8 of their posts and comments; links to the 6 this page draws on
Summary
Otter 50500 had ME/CFS and was stable for over a year on Klonopin until a switch to a generic brand and a taper in 2023 left them much worse. By October 2023 they could not use a phone or walk to the toilet without Ativan and could barely talk; Ativan gave about 24 hours of partial function. By December they were 100% bedbound and not improving, losing the ability to use a phone, sit up and communicate.
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What they tried
Their words about each treatment
- Klonopin · Helped
I had no idea its helping PEM.
In context ↗ - Ativan · Helped
It gives me almost 24 hours of some function but it won't last...
In context ↗
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. Hover or tap a point. 2 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| before June 2023 | ill but stable for over a year on KlonopinTook it while stable for more than a year. Then remained stable for another while on it.In context ↗ | Not stated |
| June 2023 | switched to a generic Klonopin brand and crashed a month laterChanged to generic brand and got a lot worse.In context ↗ | Not stated |
| October 2023 | became extremely severe after tapering KlonopinCan't use phone or walk to the toilet without ativan. Can barely talk for seconds.In context ↗ | Very severe |
| early October 2023 | started Ativan and gained some hours of functionIt gives me almost 24 hours of some function but it won't lastIn context ↗ | Very severe |
| 2023-12-14 | benzo withdrawal, 100% bedbound and not improvingI'm not improving. ... I'm also 100% bedbound.In context ↗ | Very severe |
Adverse events
- Clonazepam (Klonopin)“Changed to generic brand and got a lot worse.” In context ↗ Made symptoms worse
- Clonazepam (Klonopin)“Tried to taper to help fatigue and declined further.” In context ↗ Withdrawal problems
- Clonazepam (Klonopin), Lorazepam (Ativan)“It got to the point where pem was so bad I couldn't type or walk I was too weak.” In context ↗ Withdrawal problems
- Clonazepam (Klonopin), Lorazepam (Ativan)“Benzo withdrawal took me to very severe.” In context ↗ Withdrawal problems
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I started crashing from thinking intently.
In context ↗ - Muscle weakness
pem was so bad I couldn't type or walk I was too weak
In context ↗ - Sleep problems
I took them for a year for a sleep.
In context ↗ - Light & noise sensitivity
Without ativan no phone either. Only darkness.
In context ↗