ME/CFS
Severe → no benefit
ME/CFS with intractable migraine; drugs and sleep apnoea treatment no help
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- Not stated
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
after the same virus that kickstarted my me
In context ↗ - At worst: Severe
i rest in bed in the dark for most of the day
In context ↗ - Now: No benefit
i have not had any luck with preventative meds (have trialed all of the new ones, and the majority of the older ones)
In context ↗ - Began after: another virus
after the same virus that kickstarted my me
In context ↗
Read from 8 of their posts and comments; links to the 8 this page draws on
Summary
Dove 92843's ME/CFS began after a virus that also made their chronic migraine intractable. They rest in bed in the dark most of the day and keep ice packs by the bed in case they are bedbound. Preventative migraine drugs failed; the Cefaly device and timolol eye drops ease pain, promethazine helps nausea, and fludrocortisone helped more than midodrine with being upright. Treating mild sleep apnoea did not change symptoms.
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What they tried
Also tried
Their words about each treatment
- preventative migraine medications · No change
i have not had any luck with preventative meds (have trialed all of the new ones, and the majority of the older ones)
In context ↗ - promethazine · Helped
i take promethazine acutely a few times a week when the migraine symptoms are at their most severe, it helps me with nausea and can sometimes help me rest despite the pain.
In context ↗ - cefaly device · Helped
my most used and effective treatment is the "cefaly" neuromodulated device. it doesn't prevent attacks (for me, can for others) but helps manage pain.
In context ↗ - timolol eye drops · Helped
i also use timolol eye drops for migraine pain it is the most effective medication i've tried for me personally, having failed all others, and with no side effects.
In context ↗ - nettle tea · Helped
i drink nettle tea every day, i think it helps mildly with histamine response
In context ↗ - device for sleep apnea · No change
i did a sleep test, found i had mild sleep apnea, and started using a device to treat it. they retested me with the device and found my scores were up to normal level, but my symptoms hadn't changed
In context ↗ - fludrocortisone · Helped
fludrocortisone helped me more than midodrine with being upright
In context ↗ - fl-41 glasses · Not said
i wear fl-41 glasses any time i am out of a dark room or looking at a screen
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. 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 |
|---|---|---|---|
| — | virus triggered ME/CFS and turned chronic migraine intractableafter the same virus that kickstarted my meIn context ↗ | Not stated | |
| — | resting in bed in the dark most of the day, at times bedboundi rest in bed in the dark for most of the dayIn context ↗ | Severe | |
| 2026-10-07 | Cefaly device and timolol eye drops ease migraine painmy most used and effective treatment is the "cefaly" neuromodulated deviceIn context ↗ | Severe | |
| 2026-10-15 | still severely ill; fludrocortisone helps more than midodrine with being uprightfludrocortisone helped me more than midodrine with being uprightIn context ↗ | Severe | Fludrocortisone / Florinef |
Adverse events
- “i have been able to tell insurance that side effects were intolerable for some meds, and they counted those discontinued trials towards the prereqs for the cgrps/botox/etc!” In context ↗ Side effects
Symptoms mentioned
Gut problemsHeadaches & migraineLight & noise sensitivityPOTS & dysautonomiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Headaches & migraine
i went from chronic migraine (multiple times a week but distinct attacks) to intractable migraine after the same virus that kickstarted my me
In context ↗ - Gut problems
it helps me with nausea
In context ↗ - POTS & dysautonomia
i currently have a garmin and track my sleep and heart rate (i get OI)
In context ↗ - Sleep problems
often am not able to fall asleep until 3 or so
In context ↗ - Light & noise sensitivity
i do best if i can slowly expose myself to light, sound, and sitting in the morning over the course of 1-2 hours
In context ↗ - Post-exertional malaise
the migraine symptoms fluctuate with my crashes/after expenditure
In context ↗