As I mentioned in the April 11 post about narcolepsy, the two main symptoms of narcolepsy are sleepiness and cataplexy. The sleepiness is usually treated with stimulants or Modafinil. Treatment improves the sleepiness, but it usually does not entirely go away.
The stimulants, but not modafinil, also slightly reduce cataplexy.
Cataplexy is " a sudden weakness of the muscles of the body, especially the legs but also the face and neck, that is brought on by strong emotion, especially laughing. " Cataplexy can be very effectively treated by the antidepressants that increase brain levels of norepinephrine, including venlafaxine (effexor), protryptiline (vivactil) and fluoxetine (prozac). (although prozac is a selective serotonin reuptake inhibitor, it has a metabolite that increases norepinephrine).
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Xyrem is a novel treatment for cataplexy. Xyrem is gamma hydroxybutyrate (one of the "date rape"/club drugs). It improves night-time sleep, reduces cataplexy, and mildly improves daytime sleepiness. It is FDA approved for the treatment of cataplexy.
From the National Sleep Foundation: This medication is usually administered in two doses, at bedtime and 4 hours later. It produces consolidation of sleep and improvement of disturbed nocturnal sleep characteristic of narcolepsy. This improvement may contribute to decreased daytime drowsiness and diminished cataplexy (Broughton and Mamelak, 1980; Scharf et al.,1985). The dosing makes it very inconvenient to take. Also, because of its history as a date rape drug, it must be ordered from a central pharmacy and mailed to the patient.
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In my opinion, Xyrem is faily worthless drug. Cataplexy is usually fairly easy to control with antidepressants. For disturbed night-time sleep in narcolepsy, I prefer to use a hypnotic such as Ambien rather than Xyrem. The only reason to prescribe xyrem, in my opinion, is if someone can not tolerate antidepressants
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In my next post about narcolepsy, I will more about how xyrem works, and will also discuss the reconceptualization of narcolepsy from a disorder of sleepiness to a disorder of instability of the sleep/wake systems.
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6 comments:
Dr. Rack,
As a narcoleptic, I just wanted to offer my thanks for the recent narcolepsy posts. I didn't necessarily read anything I hadn't seen before, but it's always nice to get a new perspective.
Should you choose to go down such a path, I would enjoy reading your thoughts on:
- ways to manage the condition w/o drugs (I don't have any obvoius symptoms of cataplexy and mainly suffer from the daytime fatigue. Mostly I just deal with it, but currently I'm taking part in a trial for Cephalon's Modafinal update.)
- more specific detail on the nature of the cause of narcolepsy (seems like most written materials and treatments only address symptoms and I'd like to better understand the cause)
- the long-term outlook of living with the condition. (I was diagnosed in 2000 at age 26, but probably had been symptomatic for years prior to that. In recent years it feels like the daytime fatigue has been getting more severe, but it may just be my imagination.)
Regardless of whether you have the time/inclination to go over these points, I'm glad to see the new updates on this blog and will look forward to your future updates. Thanks for your time!
thanks for your comments, I'll address some of the areas you mention later in the week
Thanks for the update. I would like to mention that the latest antidepressant, Cymbalta, has a strong effect on norepinephrine. Unlike Effexor, which has to be given at a fairly high dose to inhibit reuptake of norepi, Cymbalta has this effect at all doses. Strattera, of course, is a pure norepi reuptake inhibitor. I'll be curious to hear if/when you have any experience treating narcolepsy with those drugs.
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Hi Dr. Rack,
I was just diagnosed with narcolepsy with cataplexy. Six years ago I went to see my family doctor for these cataplexic events I've been having. At the time, they were mild, but they have grown more severe over time. Any time I'm laughing or angry with my kids, I get so weak.
I was finally referred to a neurologist who officially diagnosed me with cataplexy, and he referred me to a sleep center for a study. I did the nighttime and daytime studies, and during the course of four 20-minute naps, had 3 REM's. Also, during the course of these naps, I fell asleep on average of one minute. But here's the thing: I'm not tired during the day...not usually anyway. I have no problems staying awake, but if I were able to, I could probably take a nap. :-) I wake up at 5 am every morning with no alarm, and go to bed around 8:30 every night. I do wake up about 3-4 times each night for not even a couple of minutes, but am able to go straight back to bed without any issue. I feel like I sleep okay, but would love to not wake up so many times. At the same time, I need to be able to hear if one of our kids needs me.
My sleep doctor put me on Nuvigil and Prozac. The Nuvigil was great for the first couple of days, but lately I have been nauseous and VERY moody. Finally talked to the doc, and told him (for the 1 millionth time) that I am not tired during the day. He took me off of the Nuvigil. I plan to start the Prozac this weekend.
My question is, will I eventually need to be on something like Nuvigil? Does cataplexy and/or narcolepsy usually get worse if left untreated? Will the Prozac help me sleep at night? These are all questions that I feel my doctor is not answering well. He prescribes me the medicine and sends me on my way. I would love some answers. Thanks for your time!!
I know I am a little late here. Xyrem was the only thing that stopped my cataplexy. I was diagnosed with profound narcolepsy in 1994. After several years of taking Xyrem, I began to react very badly to it. I miss it so much though, because it kept me from falling. It wasn't long after having to go off of it and onto Prozac that I experienced what I can only guess is an auditory trigger. I was up, then my knees went, and the rest is a boring history of fractures ending with a surgery on my foot. I was finally able to get back into a real shoe last Friday. I was very lucky I was not injured any more than I was. I wish that I could take Xyrem again, but I am a little bit afraid of it too. I am so happy I found your blog!
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