Diagnosed. Now what? and Previgil Trouble.

[meldoh]

Hello I am twenty five years old and was just diagnosed with narcolepsy about a month ago. Since middle school my friends have been calling me narcoleptic...ironic. I've always been a "good sleeper." About 4 years ago I started getting what I now know is cataplexy. A lot about my life now makes sense, sleep paralysis, hallucinations. Two months ago I totaled my car. I had blown out a few tires before and hit a parked car but I was never positive about what had happened. This time I knew I fell asleep. I was terrified!! Any way...Now that I've been diagnosed I don't know anything about narcolepsy. I could Google but was wondering if anyone had specific sites or books to read! Also has anyone ever had trouble with Previgil? I started Previgil before I was diagnosed. Before then my cataplexy was bad (7 a day) but unnoticeable except to me. I would cock my head back to laugh extra hard a joke or sit down all the time. When I got to 400mg. My cataplexy was out of control. Sunk to the floor every time I spoke. My face landed in plate at dinner. My friends and family rushed me to hospital thinking I was having seizures. My doc said that the previgil can make you edgy and the stress of the cataplexy made the cataplexy worse. Im on Xyrem now and the cataplexy is under control but my daytime sleepiness is still unpredictable. I need to start some sort of drug to keep me awake but am nervous that my cataplexy will get bad again? Any advice about either question would be greatly appreciated!! I am so glad I have found you guys!!

[sleepymoon]

Hi Meldoh,

I've heard from others that Provigil does seem to make their cataplexy worse. I've never heard that about other stimulants. Have you tried the Provigil since you started Xyrem? Maybe it won't effect your cataplexy now since that's under better control.

When I first started Xyrem, I was taking Provigil still and did for about 6 months - after that point I found the Provigil was too much for me most days so I quit taking it. You may find as you are on Xyrem longer, you may not need stimulants as much. Some people do, some don't. But your doc should be able to help you with deciding what to do about stimulants.

That's pretty crazy your friends had you pegged in middle school but it took you so long to get diagnosed. I was 23 when I found out. Looking back it seems so obvious that something was really wrong, but nobody knew, least of all me!

Welcome and I hope you get things sorted out.

Moon

[sleepymoon]

Oh...and here is a list of books and websites. I got most of this sent to me from my support group president, so don't thank me. I'm just copying and pasting it. Enjoy!

As far as books go - there is Marguerite Utley's book Narcolepsy: The funny disorder that's no laughing matter. I believe her website is this: http://narcolepsybook.com/order.html

Then there is Psychosocial Aspects of Narcolepsy which has a ton of info compiled but is not an easy read.

As for websites, someone in my N support group just sent out a whole list so I'll just copy and paste it here.

American Academy of Neurology. For medical professionals. Subsection on sleep.
www.aan.com

American Academy of Sleep Medicine , For medical professionals. Guidelines for sleep apnea, narcolepsy, et al.
www.aasmnet.org

Mignot, Emmanuel, M.D., Ph.D. (Has information about narcolepsy.)
www.med.stanford.edu/school/Psychiatry/narcolepsy

Narcolepsy Network of San Diego County
www.sandiegodreamcatchers.org

Narcolepsy Network, Inc.
www.narcolepsynetwork.org

National Center for Sleep Disorders Research
www.nhlbi.nih.gov/about/ncsdr/

National Institute of Health , Medline Plus
www.nlm.nih.gov/medlineplus/sleepdisorders.html

National Organization of Rare Diseases
www.rarediseases.org

National Sleep Foundation
www.sleepfoundation.org

Siegel, Jerry, M.D., Ph. D.—(Many articles on narcolepsy.)
www.npi.ucla.edu/sleepresearch

[meldoh]

Thank you so much for the information!! Today is Day one on Provigil again. Doing good so far. It's amazing what I can do when I am not exhausted all day!!

[sleepymoon]

You're quite welcome! That's great you like the Provigil so far. Make sure you drink plenty of water - otherwise you might get some headaches.

[LauraSakura]

When I have one C attack in front of others, I seem to get very nervous and embarassed and they become much more frequent for a while. I haven't noticed my stimulants affect the C at all though (I'm on Detroamphetamine).