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Xyrem And Effexor

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#1 Hal C

Hal C


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Posted 29 October 2010 - 10:29 PM

I am a 78 year old retired teacher and have had narcolepsy for over 40 years. Only in the past 5 or 6 years have I also had the cataplexy spells. I went on Effexor , started on 37.5 then increased to 75 mg. I definitely think it helped my cataplexy spells but did not completely take them away. I have had multiple medical problems in my lifetime (two time heart attack, have a defibrillator; two time cancer survivor; and have diabetes) but of all those things, I think narcolepsy+C is the worst. I also have sleep apnea and for a few years used a c-pap machine then quit. This past year I underwent another sleep study and started using a bi-pap machine with the water(moisture); AND have just recently started the Xyrem treatment. They did not tell me to quit effexor so I didn't. However, I just this week visited my doctor and he said to taper off the effexor so I have begun to taper off and feel no difference. I am back to the half dose and will ask about cutting that in half after a while.
I can honestly say that since I have been on the Xyrem, I have only had one very slight cataplexy spell. I started the Xyrem on 9/11/2010. They are titrating me on that too, as I started with 1.5 mg 2x a night; then 2.25 mg 2x per night; now I am on 3.00 mg 2x a night. I do fall asleep fairly fast after the first dose. I almost always wake up in time to take the second dose without having to rely on the alarm clock. In fact, my wife is finally getting a little much needed rest. It is quite an experience and I can't say enough good things about the SBS pharmacy, nurses, and all. They follow up very closely at first. It is very expensive but, Praise God, we have great insurance. I am writing this in hopes that some of you younger ones will be encouraged that life can be quite normal with narcolepsy as it was for me for many years with controlled drugs. Just don't forget to take your medication. Until just recently, we have not talked much about the condition but now that we are retired and have more time to reflect on the subject, it is easier to tell our friends, yet at times embarassing . I am insisting that my wife drive a lot lately as she lacks confidence and the day may come when it will be necessary for her to drive all the time. I, too, wish there were more support groups - that's why I joined The Network as as least I can read and talk to other people with the same diagnosis. I hope I am able to wean off the Effexor with no problems. Hal C

#2 merrymom1013



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Posted 02 November 2010 - 08:39 PM

Hal, Your story of managing so well to have a full life with narcolepsy all these years is so encouraging. My daughter developed narcolepsy with cataplexy at 10. After a rough start, she is a freshman in college- almost 4 hours from home & trying to keep that balance of college life, naps & the right medication. She's doing pretty well, but you know how parents can't help but worry.
She also used to take effexor. She too wound up tapering off after starting on xyrem & taking both for awhile. Her doctor had her taper off the effexor very gradually as you are doing & it worked out fine. The cataplexy stayed controlled by the xyrem. Her doctor said the slow taper was the key to avoiding problems. She was happy to be able to stop a drug since she knows that she'll probably be on the other stuff forever. My daughter was able to get her driver's license thanks to xyrem. She does well with local driving, but has concerns that she can't stay alert on straight ahead highway driving. So, she will have to avoid interstates and long trips. Thanks again for reminding me that she can have a productive, long, life ahead!