20+ years of ME/CFS and severe insomnia, somewhat better after Xyrem and gluten/dairy cut
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 20 years
- Last post
- Jul 2024
In their words
- At worst: Severe
when my sleep became so bad I wasn't even able to sleep for 20 minutes at a time or 2 1/2 hours cumulative in a 24 hour period
In context ↗ - Now: Somewhat better
My insomnia has gotten bad again, but nowhere near as bad as it used to be. It has improved a little again after I discovered that I am gluten intolerant and cut that and dairy out of my diet.
In context ↗
Summary
Island 84392 has had ME/CFS for over 20 years, with insomnia so severe they could sleep only minutes at a time. The one treatment they tried, Xyrem, gave them two blocks of about 2.5 hours of solid sleep and they returned somewhat to functioning, at a high price even with insurance. Sleep later worsened again but never to the old level, and improved a little after they cut gluten and dairy for gluten intolerance.
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What they tried
What they credit
Their words about each treatment
- Pacing · Helped
Pacing for a few months, while helpful, is just a beginning.
In context ↗ - Xyrem · Helped
it definitely helped shock my system back to be able to get SOME sleep
In context ↗ - gluten and dairy free diet · Helped
It has improved a little again after I discovered that I am gluten intolerant and cut that and dairy out of my diet.
In context ↗
Approaches: Other drugs and medicines
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 |
|---|---|
| onset | Onset of ME/CFS, more than 20 years before writingWhat I've learned over the past 20 yearsIn context ↗ |
| — | Sleep at its worst, sleeping only minutes at a timemy sleep became so bad I wasn't even able to sleep for 20 minutes at a time or 2 1/2 hours cumulative in a 24 hour periodIn context ↗ |
| — | Able to get some solid sleep and start functioning againI did start to return to the world of the livingIn context ↗ |
| 2024-07-23 | Insomnia got bad againMy insomnia has gotten bad again, but nowhere near as bad as it used to be.In context ↗ |
| 2024-07-23 | Sleep improved a little after cutting out gluten and dairyIt has improved a little again after I discovered that I am gluten intolerant and cut that and dairy out of my diet.In context ↗ |
Adverse events
- Sodium oxybate (Xyrem, Xywav)“I had to be in bed when I took the medication to make sure I didn't collapse.” In context ↗ Low blood pressure or fainting
- Sodium oxybate (Xyrem, Xywav)“passed out on the bathroom floor and could barely talk” In context ↗ Low blood pressure or fainting
Symptoms mentioned
Their words about their symptoms
- Sleep problems
My insomnia has gotten bad again, but nowhere near as bad as it used to be.
In context ↗ - Post-exertional malaise
when I thought I was cutting back enough and not pushing too hard, I wasn't cutting back enough and still pushing too hard
In context ↗
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