I am worried about an upcoming MSLT, what should I do?

Posted , 3 users are following.

Gonna try get straight to the point here.

I tend to fall asleep a lot no matter how organised my sleep routine is. 

I always had a hunch that it was narcolepsy because of how fast I fall can fall asleep (despite not having cataplexy) plus the common sleep paralysis and audio hallucinations when I'm falling asleep. However my episodes of falling asleep also have no routine and I feel I might not be able to sleep when they ask me to at the MSLT. What do I do? I wouldn't like to be misdiagnosed with hypersomnolence, because I just feel in my guts that the severity of how it is affecting my life wouldn't make sense if it was hypersomnolence. Get what I mean? Also they would prescribe anti depressants for that, which I have absolutely no faith in at all for private reasons. What should I do? How do I make sure I fall asleep in that MSLT?

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2 Replies

  • Posted

    Do you have any 23andme data to analyze to see your genetic propensity for sleep issues?  Also I would address your adrenal and blood sugar function because many people are stage three adrenal burnout and have poor blood sugar and don't even know it.

  • Posted

    Hi Algee,

    Medical opinion varies widely as to whether hypersomnolence is actually a mild form of narcolepsy. I'm personally convinced it is - both as a former neuro nurse and as a sufferer. In my neuro days, 50 years ago, doctors were categoric - hypersomnolence was a totally different condition - but I know this view has now been revised by some experts.

    I've always had the problem of dropping off at embarrassingly inconvenient times and I've also had sleep paralysis with all the attendant hallucinations all my adult life. It runs in my family. My father, at least one of his brothers and my grandmother all had this combination of hypersomnolence and sleep paralysis. My father twice fell asleep while riding his bike and my grandmother frequently set fire to herself when she fell asleep while smoking. (Fortunately she never came to any serious harm!)

    It's worth bearing in mind that both narcolepsy and hypersomnia tend to run in families, which I suspect is another clue to the nature of the latter.

    To complicate things further, I've also had three attacks which bore all the hallmarks of cataplexy, though I don't know whether anyone else in the family ever had these. All occurred when I was under extreme emotional or physical stress. However, they've never followed the typical pattern, as the first one didn't happen till I was 43. I've had two more in the intervening 20-odd years, the last one only two months ago. (I'm now 74.)

    My attacks of falling asleep don't follow the the typical narcolepsy pattern either. For example, I've never fallen asleep while actually doing something or talking, whereas true narcoleptics are known to even fall face-down in their plates while eating.

    I've never been tested for narcolepsy, and there wouldn't be much point now. However, you might want to do a bit of research to see if you can find a doctor who's open to the idea of hypersomnolence being a milder version of narcolepsy. I'd be interested to hear the results if you ever managed to get tested by a more open-minded practitioner.

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