ME/CFS
Relapsed
ME/CFS with daytime sleepiness and migraine, alert on Sunosi then worse again
- Condition
- ME/CFS
- At worst
- Not stated
- Ill before improving or writing
- Not stated
- Last post
- Jun 2026
In their words
- Now: Relapsed
Unfortunately, Sunosi really exacerbated my chronic migraine, so I did stop taking it. It was helping me be more alert and awake
In context ↗
Read from 6 of their posts and comments; links to the 6 this page draws on
Summary
A woman with ME/CFS tried D-ribose and noticed no effect, good or bad. Her neurologist prescribed Sunosi for excessive daytime sleepiness; it made her more alert and awake, but she had intense feet cramps and it really exacerbated her chronic migraine, and she wasn't sleeping much, so she stopped taking it. Two other stimulants had only made her jittery, with no extra energy or less sleepiness.
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What they tried
Their words about each treatment
- D- ribose · No change
I tried D- ribose and didn’t notice any effects good or bad.
In context ↗ - two stimulants · Worse
I tried two stimulants and all they did was make me jittery. No more energy or less sleepiness than before.
In context ↗ - Sunosi · Worse
It was helping me be more alert and awake and my husband thought he was getting his wife back. ... Unfortunately, Sunosi really exacerbated my chronic migraine, so I did stop taking it.
In context ↗
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 |
|---|---|
| 2026-03-29 | Sunosi made her more alert and awake during the dayI just started Sunosi and I think it’s helpful. ... I’m kinda excited to be able to stay awake during the day and not feel like I need to go to sleep constantly.In context ↗ |
| 2026-06-06 | stopped Sunosi after it sharply worsened her chronic migraine and sleepUnfortunately, Sunosi really exacerbated my chronic migraine, so I did stop taking it.In context ↗ |
Adverse events
- Stimulants (unspecified)“I tried two stimulants and all they did was make me jittery. No more energy or less sleepiness than before.” In context ↗ Side effects
- Solriamfetol (Sunosi)“Only on day two but am having nightmare feet cramps.” In context ↗ Side effects
- Solriamfetol (Sunosi)“Unfortunately, Sunosi really exacerbated my chronic migraine, so I did stop taking it.” In context ↗ Made symptoms worse
- Solriamfetol (Sunosi)“And I wasn’t sleeping much either which may not have helped migraine either.” In context ↗ Insomnia from treatment
Symptoms mentioned
Their words about their symptoms
- Sleep problems
I’ve just been prescribed Sunosi by my neurologist for excessive daytime sleepiness.
In context ↗ - Headaches & migraine
Unfortunately, Sunosi really exacerbated my chronic migraine
In context ↗ - Pain & fibromyalgia
I often have feet cramps but these are way more intense
In context ↗