The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Discussion in 'Sleep' started by Lee Ann, Aug 26, 2014.

  1. Lee Ann

    Lee Ann


    My sleep study test revealed I was borderline narcolepsy but the doctor said I had hypersomnia. I guess if there is a silver lining its w/a dx of narcolepsy you get your drivers license pulled...

    It really is very debilitating. I haven't tried drugs yet just too afraid.

    So I was wondering if anyone of you have hypersomnia and what you do to cope.

    merylg likes this.
  2. lnester7

    lnester7 Seven

    I go thorugh periods of this (ussualy before my period) I am strugling with it right now. What I noticed is that this happens to me when my Blood pressure is very low during my sleep period (I wake up w 90/60BP), so it seems to get better as I have better wake up BP. So I am taking salt before I go to bed, I feel somwhat better but no cure.
    WoolPippi likes this.
  3. BadBadBear

    BadBadBear Senior Member

    Rocky Mountains
    That's interesting, @Inester7. I have periodic hypersomnia, too, and also low waking blood pressures - like 85/50 or so. I wonder if that's a factor. I am sooooo tired today, can't wake up...
  4. Martial

    Martial Senior Member

    Ventura, CA
    Hypersomnia is very common with chronic infection, I struggled with it a lot on and off again. I really didn't try to do too much for it then listen to my body, take naps if I needed and tried to work through it I suppose.
  5. perchance dreamer

    perchance dreamer Senior Member

    From what I've read, whether or not the DMV suspends your driver's license because of N. depends on the state you live in.
  6. zzz

    zzz Senior Member

    The best drug for narcolepsy (for which it has been approved) and hypersomnia (which is technically off-label) is Provigil (modafinil). From the Web site Psych Central Professional, which is targeted to psychiatrists:
    The article as a whole is quite interesting.

    A large proportion of people with ME/CFS respond very positively to Provigil, as did I. You can see my recent post on Provigil here. I didn't even have hypersomnia. @Lee Ann, I think you would do very well with this drug based on your symptoms. It is not addicting, it has few side effects, and those tend to be minor. Any side effects generally go away within 24 hours of stopping the drug. I am extremely sensitive to drugs; at this point, I can't take most of them. The fact that I was able to take Provigil for 8 1/2 years is a testament to its benign quality.

    A starting dose for a drug-sensitive person is generally 50 to 100 mg, with the dose gradually being raised until maximum effectiveness is reached.

    Provigil used to be very easy to get if you had health insurance. However, after a few years, people started to notice that Provigil was great for healthy people who simply wanted to extend their waking hours. By 2004, six years after its release, 90% of prescriptions for Provigil were off label.

    The insurance companies didn't like this, as many of these prescriptions were not medically necessary, and Provigil is an expensive drug. So insurance companies gradually started requiring pre-approval for the drug. Pre-approval for Provigil generally requires a diagnosis of narcolepsy backed up by documentation, usually lab tests. If you have tests showing that you are borderline narcoleptic, that may be good enough, especially if your doctor is willing to intervene for you if necessary.

    The generic form of modafinil is now available, but it usually requires the same pre-approval process. There are some online Web sites that sell it, but even the generic version is not cheap. However, generic prices tend to fall with time.

    Provigil is one of the safer drugs; it basically just makes you feel normal (or a little bit better than normal). Provigil has also been shown to be an effective antidepressant, as the article I cited states.
    Last edited: Sep 2, 2014
  7. perchance dreamer

    perchance dreamer Senior Member

    I tried Provigil and Nuvigil for N., and they really disagreed with me. They spaced me out so badly, disrupted my sleep, and plugged up my sinuses. Those symptoms stopped when I discontinued those drugs. I do know that lots of people with N. do well with stimulants, though.

    For me, Xyrem has helped the most with N.
  8. barbc56

    barbc56 Senior Member

    I was on Provigil for eight years and Ithen switched to Neuvigil. I find Neuvigil it to be a bit gentler though I didn'the have any problems with the Provigil. Both gave me a slight headache for the first couple of days but after that, no side effects.

    Caffeine can make me nervous but not the Neuvigil. It's hard to explain as it doesn't make me hyper but I feel closer to normal, and it gives me about seven hours of functioning at 70 to 80 percent, probably closer to 70 percent for about seven hours. Provigil did not last that long.

    Several things here. For me, it rarely disrupts my sleep as staying up longer seems to get me to bed earlier. Sometimes, I can take it and go back to sleep for another six hours.

    Last September, my neurologist warned me that most of his patients needed documentation for their refills and it was happening with almost all of the insurance carriers. This was the first time since I started Provigil/ Neuvigil. Otherwise, it costs over $800.

    Fortunately, I had no trouble getting the medication as I have several sleep disorders. It can also be approved for excessive daytime sleepiness.

    This is my experience and we each may differ whether we can tolerate a medication. I know two people who tried Xyrem. It helped one but not the other.

    zzz likes this.
  9. kristysmiles


    Kaneohe, HI
    I have been on Provigil for the last few months until last week for idiopathic hypersomnia. My doctor took me off last week to retest me since I've recently been having symptoms of insomnia. I reacted very strongly to Provigil at first, and I had to build up to the prescribed dose by splitting the pills, I still would only use about half my dose (200mg) most days unless I needed to stay up for something in the evenings.
    zzz and barbc56 like this.
  10. harveykelley


    Sleep whenever you can for however long you can instead of waiting until bedtime.

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