Questionable efficency test of medication.

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This topic contains 6 replies, has 4 voices, and was last updated by Max 2 months, 1 week ago. This post has been viewed 125 times

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  • #10054
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    Max
    Participant
    @max

    Hello everybody.
    I have since I first got diagnosed with narcolepsy with cataplexy been on modafinil and then, thanks to living in France, Wakix/pitolisant.
    I quit both though. No real difference with Wakix and modafinil gave me heart palpitations.

    When I first got on modafinil my neurolog wanted to see if it was effective or not. I did some procedure a little bit like the MSLT. But in the MSLT I was lying down in a bed, in complete darkness and TRYING to fall asleep. In this test though, while on my medication, I was sitting up in a leaning chair, in the half dark and trying to NOT fall asleep. I wasn’t allowed to stand up or move around to wake me up but I had my eyes open and was trying mentally to stay awake.

    Then my neurolog compared the results of these two different tests and since it took (slightly) longer for me to fall asleep in the second case (an average of like 4-5 minutes instead of 4) she came to the conclusion that the medication was working.

    So to the question.
    Has anyone else done this “efficency” test and is it just me that thinks it’s totally unscientific?
    One could as well say that light is medication and that beds cause narcolepsy from these test results.

    Could anyone explain this to me? When I’m telling my neurolog that it’s Bulls**t (in nicer words) she just says that that’s how the test is done.

    Thank you for being here on the forum. It helps.

    #10057
    Ferret
    Ferret
    Moderator
    @ferret

    @max
    It’s called an MWT or Maintenance of Wakefulness Test.
    http://sleepeducation.org/disease-detection/maintenance-of-wakefulness-test/overview-and-facts

    And you failed, therefore your meds were not working the way you were taking them.

    #10060
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    Max
    Participant
    @max

    Hello Ferret!
    Thanks for specifying what the yet was called.
    I’d agree to that it was a failure.
    In the link that you sent though it says in the “results” section that you can’t “fail” the test. Just that a doctor can analyze the test result and come to a conclusion from that.
    What I didn’t agree with its that my doctor came to the conclusion that the meds worked. And especially that she came to that conclusion only by the comparison with the MSLT results.
    I can understand that the test is done like it is and that, in cases where people don’t show any sign of falling asleep, it could show if the medication is efficient.

    But to compare it to the MSLT and just because it’s slightly better say that mediation is working must be science at its lowest…

    #10062
    Ferret
    Ferret
    Moderator
    @ferret

    I’m giggling here because I absolutely agree with you. I’ve never done that test but I also question it. Still, it’s often done for those who have had their driving licenses suspended due to a diagnosis of Narcolepsy. If they can stay awake then they can usually get their license back.

    #10068
    Avatar
    Natdoc
    Participant
    @natdoc

    Max
    Neither the MSLT or MWT are scientific in that they are not reproduceable. Both of these “tests” will vary from day-day in the same patient.
    The best monitoring parameter is YOU. How do you feel, are you better, worse or the same.
    These tests are performed more per insurance company requirements than Physicians needs.
    MSLT and MWT should not be compared as they are different tests, the MWT can in no way tell if your meds are working.
    SorryBest of luck

    #10073
    Jason
    Jason
    Keymaster
    @jasonm

    @max totally agree with @natdoc but I think it’d be fair to say that if you didn’t fall asleep or had significantly better results on medication it might be an okay test to measure the effectiveness. But it’s still a bit silly to use a diagnostic test for medication.

    Unfortunately the only medication shown to restore pwn to the performance levels of a person without narcolepsy is methamphetamine. Obviously it’s not used very often however.

    #10101
    Avatar
    Max
    Participant
    @max

    Hey you all!
    Thanks for the response. It seems like we more or less agree. Weird that my doctor can’t see it this way…
    And yeah the test in it self isn’t stupid. Probably not too bad of an indicator for knowing if you’re safe to drive.
    And doing some MWT sessions without meds and then some with I guess also could tell you something about the efficency of the drug.
    I’ll see how this develops. I’m in for some more tests before my doctor feel like she can prescribe me the heavier stuff like GHB and ritalin…

    Take care everybody!

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