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recent systematic review found modafinil was not effective at treating ME/CFS. This doesn't surprise me as I was actually taking modafinil when I came down with ME and I instantly was unable to tolerate it. Modafinil works great for excessive daytime sleepiness but it doesn't have much effect on fatigue in my experience.
OK. This is very important for me because I'm back on modafinil thanks to additional stress in my life right now that's brought back my narcolepsy and cataplexy symptoms. I would like to segue to a related issue concerning the terrible dance between ME/CFS/FMS and narcolepsy/cataplexy.
Quick survey: who here in this thread has experienced obvious symptoms of cataplexy with or without obvious symptoms of narcolepsy that couldn't be explained by another condition, like excessive daytime sleepiness (EDS) from apnea, insomnia, medication, etc?
And for those who answered "yes" for the above question… were you tested for narcolepsy in a sleep lab but the results were negative because REM wasn't observed during the first 15 minutes of each sleep period?
This situation has me baffled! Stanford sleep neurologists are positive I don't have narcolepsy, even though I have the gene, it runs through my mom's family, and strong emotions like fear produces cataplexy with and without EDS. The reason? No REM during the daytime sleep testing periods.
But that's where I question whether or not their criteria is appropriate for my patient population: I produced virtually no REM during the evening testing the night before, during 4.5 hours of sleep. Which is common in fibromyalgia.
I get the sense that very little testing for narcolepsy has been done in folks with ME/CFS/FMS. And if that is the case… then how do these researchers know whether or not these two conditions can co-exist?
If the ME/CFS/FMS disrupts the typical sleep cycle and results in loss of Stage 3/4 and REM sleep… then how can you produce REM sleep during the daytime sleep episodes typical in narcolepsy and cataplexy?
Why can't these sleep intrusions into wakeful states be Stage 1 or Stage 2 sleep? Why does it have to be REM in order to qualify as narcolepsy/cataplexy?
The more I learn about other ME/CFS/FMS patients having the same problems with narcolepsy/cataplexy symptoms, the more I believe it is narcolepsy/cataplexy but as a non-REM variant. This seriously needs to be studied. It might be the key for why some folks like me go through periods of unbelievable extremity weakness and no discoverable cause: it's actually cataplexy but no one is even thinking about the possibility.