ME/CFS with heavy daytime sleep and long naps, somewhat better with Belsomra and melatonin
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- Not stated
- Last post
- Jan 2025
In their words
- Condition: ME/CFS
I don't feel anywhere close to what I used to before this disorder started
In context ↗ - At worst: Moderate
I still sleep way too much during the day ... I still need long naps
- Now: Somewhat better
I don't feel anywhere close to what I used to before this disorder started, but I have found a big difference in 10 hours of sleep and 10 hours of quality/sound sleep.
In context ↗
Read from 10 of their posts and comments; links to the 9 this page draws on
Summary
Someone with ME/CFS and fibromyalgia, whose onset date is not given, described sleeping far too much in the day and needing long naps. A prescription sleep aid (Belsomra), with melatonin and atenolol for a raised heart rate, brought noticeable improvement, while modafinil helped only a little. They still felt nowhere near their old self and did much better on holidays nearer the equator.
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What they tried
What they credit
Also tried
Their words about each treatment
- prescription sleep aids · Not said
I ended up trying prescription sleep aids and even then it took a while to find one that works for me.
In context ↗ - melatonin · No change
I also take a small amount of melatonin ... many of which are supposed to help sleep but never did on their own
- Belsomra · Helped
Belsomra has been the most helpful sleep medication
In context ↗ - CBD · Helped
I also found CBD useless for a long time until I happened upon a brand that worked.
In context ↗ - sleep hygiene (separate room, earbuds, dark room, eye mask) · Not said
including sleeping in a different room with earbuds, dark room and eye mask, all kinds of sleep aids
In context ↗ - Atenolol · Helped
My GP put me on a low dose Atenolol for it. It helps so much.
In context ↗ - modafinil · Helped
I am taking modafinil now, but it is only helping a bit.
In context ↗ - Gabapentin · No change
many of which are supposed to help sleep but never did on their own
In context ↗ - Zonasimide · Not said
I forgot to add Zonasimide in that list. I am trying to wean off that one at the moment.
In context ↗ - pacing · Helped
it would be a VERY different answer than if it was summer, I had been properly pacing
In context ↗ - vacations in Aruba and Puerto Rico · Helped
When I vacationed in Aruba for a week, I felt pretty good ... Vacation to Puerto Rico for two weeks, and I felt really good.
In context ↗
Approaches: Pacing
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 |
|---|---|---|---|
| onset | ME/CFS onset, never dated; heart rate was normal before the illnessI don't feel anywhere close to what I used to before this disorder startedIn context ↗ | Not stated | |
| — | sleeping badly, long trial and error with sleep aidsI ended up trying prescription sleep aids and even then it took a while to find one that works for me.In context ↗ | Moderate | |
| 2022-08-30 | skipped the sleep aid for one night; next day back to barely functioningIt was a mistake. I fell asleep and thought I slept through the night but the next day was AWFUL. I was back to barely functioning.In context ↗ | Severe | |
| 2022-12-31 | found a prescription sleep aid that worked; felt noticeably better but still short of old selfI have felt noticeably better since finding a sleep aid that works well for me.In context ↗ | Moderate | |
| 2023-04-07 | modafinil made them a little less tired but not enough; still needed long napsI am taking modafinil now, but it is only helping a bit.In context ↗ | Moderate | Modafinil / armodafinil |
| 2025-01-22 | much better on holidays nearer the equator; only one nap in two weeks in Puerto Rico, activities they did not expect to manageVacation to Puerto Rico for two weeks, and I felt really good. I literally only took one napIn context ↗ | Mild | Altitude and climate change of location |
Symptoms mentioned
Their words about their symptoms
- Sleep problems
I still sleep way too much during the day, but it has improved when my nights improved some.
In context ↗ - Heart symptoms & palpitations
The Atenolol is for increased heart rate that I did not have before the illness.
In context ↗ - Pain & fibromyalgia
I also try to stay on top of pain.
In context ↗ - Brain fog
if I forget the other evening meds because of brain fog or adhd
In context ↗
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