Index Support Center Forums Treating Narcolepsy Some help with Belsomra (suvorexant)

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  • #9662
    JustGJustG
    Participant

    I had a Belsomra experience, after OSA and CPAP, and before non-specific Narcolepsy type 2 diagnosis.

    I had an immediate and profound sleep experience at each dosage level (5,10,15,20) but it was only effective for 3 nights at each level, getting about 7 hours of what I suspect (unable to recall in my own experience) is what a good night of sleep is like.

    After the 3 nights, the sleep quantity started shrinking back towards my standard 1-2 hours. We would increase dose, then I’d get closer to 7, then it would shrink. At the max dose(20mg) same thing, but after about 5 nights I was back to around 2 hours, and as I continued to take it, it eventually was completely ineffective (I resumed my usual 1-2 hour pattern)

    I tried 30 and 40 (desperate for relief) however it had zero impact, and may have been aggravating even.

    This was the 1st time I could remember, lying down to sleep, then next thing I know, it’s morning time. I am always aware of being awakened and rolling around most of the night.

    My eyes were sealed with sleep(sand), I was in the same position I fell asleep in (supine). After a few nights my hips started to ache( I don’t think they were used to being supine, and not moving at all for 7 hours)

    I cried a little when I realized that this glorious experience was not going to be in my future.

    So, trying to figure out why I had this experience. My neurologist (after this experience with a different psychiatrist) diagnosed “non-specific” NT2, and I didn’t have any SOREMS on my MSLT (but < 4 min sleep latency) but he said I had “unusual bruxism” so was able to diag and prescribe xyrem.

    The xyrem usually gives me about 3 hours of unconsciousness, although my sleep videos(my own, nightly) still show regular and sometimes bizzare movements throughout. And I’m still exhausted and have EDS (only mildly improved on xyrem)

    I also have a high periodic limb movement index. 45/hr before CPAP, 87/hr after CPAP. Even with xyrem my legs are swimming the English channel all night long. My neuro prescribed Mirapex, a dopamine agonist, which visibily and significantly reduced the amplitude of my leg kicking,

    With mirapex, my leg movements are now more like shifting a motorcycle, toes twitch, ankle flexes, knee tweaks. Seems almost as frequent as before, just a lot less motion. This allowed me to sleep supine for longer periods (with the xyrem) and this is when I noticed my bizzare arm motions getting into the act.

    Bizzare, as in, looks as if I’m making hand gestures to an audience. Dual ok signs, point to the sky, point to the crowd, dual arm extension from head to crowd, then, a single hand tip of the hat gesture. Then I wake up. I showed this video to my wife, thinking she would think it was fake, but she said, “you do this type of thing all the time.” WHAT???!??

    Apparently this is the type of thing that is disrupting my sleep. Looking for examples, I find a thing called Nocturnal Frontal Lobe Epilepsy. And I see videos of others doing similar bizzare actions in their sleep.

    My Neuro is convinced I have narcolepsy, which I certainly may have, but when he saw this bizzare video (I was on his 72 hr EEG at the time) he confirmed, this was a seizure, and reffered me to an epilepsy center. Video EEG is scheduled in about a week.

    My advice if y’all are suffering and looking for a cause. Get a night vision, motion detecting security camera (doesn’t need to be expensive) and point it at your bed. See what the heck is going on nightly. Might be stuff that they can’t catch on a single night sleep study.

    I’m not sure about why my Belsomra experience was atypical(I presume)but it was a nice, but short lived relief. I’m not certain I have narcolepsy precisely, so YMMV, but if you have a similar experience to mine, I bet we have more than that in common.

    #9665
    FerretFerret
    Moderator

    @justg
    Thank you for your very detailed post. Your suggestion of a motion detector night camera is excellent.
    I wish you the very best, hope others benefit from your experience and, please, keep us posted on your experience going forward.

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