This topic contains 2 replies, has 2 voices, and was last updated by Ferret 2 months, 1 week ago. This post has been viewed 158 times
- January 9, 2019 at 1:49 pm #8739
I’ve been exhausted since I was a teenager. I’m in my mid 30s now. Every time I went to my doc saying “hey, I’m REALLY tired” I got an antidepressant even though my mood was ok.
Anyway, this year I had more and more “muscle weakness attacks.” To the point I collapsed on transit. That caught my docs interest finally and I was tested for everything MS, lupus, you name it. Nada.
At a loss for what to try she sent me to a sleep clinic thinking maybe sleep apnea (which was previously negative on a take home test and my spouse has listened and not noticed signs). A half hour appointment turned into 3 hrs and a rushed appt for PSG and MSLT. He asked questions about things I never knew were relevant to tell my doctor. Like yes I often wake up paralyzed. I have been sneaking around taking 15-20 min naps every day at work for years. I often dream vividly in 15 min naps. I generally am asleep in less than 5 min if not 30 seconds. When out with friends goofing around at the bar I do sometimes get short muscle weakness episodes, at work occasionally too. I thought I was a championship napper, I didn’t realize until he asked that it could be narcolepsy with cataplexy.
The more I read the more it felt like duh, obviously, just a decade late 🙂
Except I went for my PSG last night. I’ve been off all meds two weeks, kept a sleep log and tried to stick to the schedule of my study. Got all hooked up and had what felt like a pretty typical night. Fell asleep nearly immediately and had fragmented sleep up 5 or so short times falling back asleep relatively quickly with some mild hallucinations or dreams. Actual felt kinda ok was a good sleep generally speaking.
But this morning they said no MSLT they “know what my problem is” from last nights data I was free to go home. Huh? Tech obviously couldn’t say anything he’d consulted with doc. Now I have to wait until end of next week to see doc. What could have been so definitive they cancelled MSLT?January 9, 2019 at 1:51 pm #8741
I should add I then fell asleep on the train home so I would have killed that second nap!January 9, 2019 at 4:06 pm #8745
Don’t be discouraged. A most likely cause for the cancellation of the MSLT is that you do have sleep apnea. And I really hope you do because it is usually so much easier to rectify.
Now, that doesn’t mean that you don’t have Narcolepsy with Cataplexy BUT there is a method to the madness. First, they will try and get your sleep apnea stabilized THEN if you are still napping and sleeping excessively, they will order another psg and mslt.
I sincerely hope that you only have sleep apnea.
Best of luck! And kudos to you for seeking solutions with regards to your well being! Please keep us posted on your journey.
p.s. if you still suspect that you have cataplexy, under the headings in the tool bar at the top of this page, you will see “Resources”. Click on that and read a member’s primer on cataplexy. His handle is Sk8aplexy. It’s bang on. Remember that cataplexy is triggered by an emotional response to an UNEXPECTED event.
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