Excessive sleepiness, brain fog and PEM with ME/CFS, now near normal on Xywav/Xyrem
- Condition
- ME/CFS
- At worst
- Mild (working or studying, with limits)
- Ill before improving or writing
- Not stated
- Last post
- Sep 2025
In their words
- Condition: ME/CFS
I was diagnosed with CFS/ME before a doctor said you are sleepy, not necessarily fatigued
In context ↗ - At worst: Mild
I still have PEM, especially after sex or a long bike ride.
In context ↗ - Now: Near normal
Now I have no brain fog, sleep 8 hours a day, exercise for an hour to 2 hours daily, don't have muscle pain, and don't crash as often.
In context ↗
Read from 17 of their posts and comments; links to the 14 this page draws on
Summary
Meadow 61751 had long-standing excessive sleepiness, unrefreshing 12-hour sleep, PEM, brain fog, muscle pain and morning nausea, and was diagnosed with ME/CFS before a sleep specialist diagnosed idiopathic hypersomnia. They credited Xywav/Xyrem with a dramatic improvement: no brain fog, eight hours' sleep, daily exercise and fewer crashes, though still sleepy and needing naps. Xywav caused depression, managed with antidepressants and a lower dose.
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What they tried
What they credit
Also tried
Their words about each treatment
- Testosterone · No change
I have been on Testosterone, hCG, and Clomid for about 6 years and it has not helped my fatigue.
In context ↗ - Xyrem · Helped
I used to be on Xyrem and it did help me quiet a lot (and in general allowed me to be more active)
In context ↗ - Xywav · Helped a lot
I am currently on Xywav (having been on Xyrem before) and it definitely helps. In fact, it's the most helpful drug I've ever taken.
In context ↗ - Ketamine · Helped
I do Ketamine regularly (every 3 days at home) and it definitely helps me be a bit more functional
In context ↗ - Modafinil and Armodafinil · Worse
I’ve found Armodafinil to have a “cleaner” feel compared to Modafinil. ... Both made me a complete asshole when I’m normally a pretty mild mannered person.
In context ↗ - jaw surgery · No change
I was diagnosed with UARS, had jaw surgery to fix it, and I still have problems with feeling extremely groggy in the morning.
In context ↗ - Famotidine · Worse
Famotidine is a histamine antagonist, so it's very possible to make you sleepy. It does for me when I take it.
In context ↗ - multiple antidepressants · Not said
I take a reduced dose of Xywav and I’m also very actively taking multiple antidepressants to stay on Xywav.
In context ↗ - supplements and lifestyle changes · Not said
All of those supplements and lifestyle changes were things I've tried (many times over).
In context ↗ - Loop Earplugs · Helped
I have Loop Earplugs (mostly for concerts) and they work really well.
In context ↗
Approaches: Other drugs and medicines
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. 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 | After |
|---|---|---|---|
| most of my life | long-standing excessive sleepiness and fatigueI was once diagnosed with ME/CFS, but had the same desire to sleep 24/7 for most of my life.In context ↗ | Not stated | |
| 2023-01-24 | Xyrem allowed more activity but PEM remainedI used to be on Xyrem and it did help me quiet a lot (and in general allowed me to be more active), but I still have PEM, especially after sex or a long bike ride.In context ↗ | Mild | |
| 2023-02-24 | jaw surgery for UARS; less daytime sleepiness but still groggyI was diagnosed with UARS, had jaw surgery to fix it, and I still have problems with feeling extremely groggy in the morning.In context ↗ | Mild | Sinus, jaw and tonsil surgery |
| 2024-01-23 | home ketamine reduced pain and improved functionI do Ketamine regularly (every 3 days at home) and it definitely helps me be a bit more functional than the occasional IV Ketamine treatment. It also reduces pain, which is great.In context ↗ | Mild | Ketamine |
| 2024-02-10 | Xywav improved sleep and recovery; PEM and muscle pain remainedI still struggle with PEM and muscle pain, but with better sleep my body recovers so much more quickly and I'm not as exhausted during the day.In context ↗ | Mild | |
| 2024-06-15 | on Xywav: no brain fog, 8 hours' sleep, daily exercise, less crashingNow I have no brain fog, sleep 8 hours a day, exercise for an hour to 2 hours daily, don't have muscle pain, and don't crash as often.In context ↗ | Near normal | |
| 2025-09-08 | still much better on Xywav; still sleepy sometimeswas able to get on medication (Xywav) that dramatically improved my life.In context ↗ | Near normal |
Adverse events
- Modafinil / armodafinil“Both made me a complete asshole when I’m normally a pretty mild mannered person.” In context ↗ Mood or psychiatric effects
- Famotidine (Pepcid)“it's very possible to make you sleepy. It does for me when I take it.” In context ↗ Side effects
- Sinus, jaw and tonsil surgery“I’ve actually had two jaw surgeries (my maxilla didn’t fuse correctly and needed revision surgery)” In context ↗ Other
- Sodium oxybate (Xyrem, Xywav)“if I go up higher my depression is unmanageable” In context ↗ Mood or psychiatric effects
- Sodium oxybate (Xyrem, Xywav)“I take a reduced dose of Xywav and I'm also very actively taking multiple antidepressants to stay on Xywav.” In context ↗ Mood or psychiatric effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I still have PEM, especially after sex or a long bike ride.
In context ↗ - Brain fog
Now I have no brain fog
In context ↗ - Sleep problems
I often still need to nap during the day.
In context ↗ - Pain & fibromyalgia
don't have muscle pain
In context ↗ - Gut problems
I always feel sick and nauseous if I wake up before 8:30 am
In context ↗
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