Posted by Nancy Valencia on April 08, 1999 at 03:35:14:

In Reply to: Any Suggestions??? posted by Jason on April 06, 1999 at 07:08:58:

Hi Jason, My narcolepsy was diagnosed in 1969; I've been taking medication to control EDS for thirty years. The first medication I took was Dexamyl. (It's no longer on the market at all; I don't believe it is even being manufactured.) I was my old self again--I was awake, aware and had reasonably good, not perfect, results. However, a very knowledgeable friend suggested that I switch to straight Dexedrine because Dexamyl has a sedative in it. (Narcoleptics do not need "downers!") When I asked my doctor to switch me to Dexedrine, he prescribed a medication that was then described as the "drug of choice" in treating narcolepsy. He put me on Ritalin; I had an awful time with it. (It's an understatement to say I wasn't myself. For the year and a half I was on Ritalin, I had to constantly fight EDS.) When I moved to another location, I asked my new doctor to prescribe Dexedrine for me. For 28 1/2 years I've taken Dexedrine and still get good, not perfect, results. I've insisted that my doctor prescribe enough medication so that I can be awake and aware to accomplish some things. Even so, not one hour of the day goes by but what I am not reminded that I have narcolepsy. Narcolepsy is unrelenting no matter what medication you take. No one has to tell a narcoleptic to nap! (By the way, I think drug holidays are ridiculous! Who ever thunk up that one up should have the hole in his head filled with dental cement!)

Above I stated that Ritalin was "the drug of choice" because the pharmaceutical company which manufacturers Ritalin, "pushed it." Busy doctors being concerned about the use of amphetamines prescribed it. (Ritalin is amphetamine-like.) For many persons with narcolepsy, Ritalin works quite well. However, I've been concerned for a long time about my fellow narcoleptics who report difficulties similar to yours. To them and to you, I suggest that you have a serious chat with your physician and be switched to other medication. You do have choices among which are Desoxyn, Dexedrine, (Ritalin), Provigil, and Cylert. I have listed these choices in descending order of strength.
There are other medications which also control EDS. If you and your doctor decide to switch to another medication, it would be logical for you to try Dexedrine or Desoxyn so that you can have better control of EDS.

I'm afraid that Provigil has now become the "drug of choice." Again, it isn't because Provigil controls EDS any better than any of the other meds available, but because of the ridiculous hype about those awful amphetamines. In other words, physicians will prescribe Provigil because it is not an amphetamine.

Be aware that ALL medications used to treat narcolepsy, including Ritalin, Provigil, and Cylert are "scheduled" meds. Because medications which relieve EDS are said to have a high potential for abuse by people who don't need 'em, they have been placed in special categories as "controlled substances." The place in the schedule is arbitrarily decided, not by doctors, but by politicians. Although meds which control EDS are stimulants, they are considered "narcotics" because they have been placed on the scheduled list of "controlled substances." (As far as I'm concerned the only group being controlled are persons with narcolepsy. We have to jump through hoops just to get medications which give a bit of quality to our lives.) For the vast majority of persons with narcolepsy, none of the medications prescribed for EDS are addictive.

It is your right to have as much control over symptoms of narcolepsy as possible; it is your right to have as much quality of life as possible.
I recommend that you try ALL the narcolepsy meds including the amphetamines to determine which gives YOU the best control. As you try each medication, it won't take you but a day or two to determine which gives you the best relief from EDS.

Thirty years ago, I was vaguely aware of the horror stories associated with illicit use of amphetamines. It was then that I made the choice to live a life of QUALITY instead of QUANTITY. After all, no one knows the number of his days. Yet, here I am 30 quality-filled years later. I've reset my thinker to go for quality and quantity.

You ask for suggestions. In addition to getting on better meds, I suggest the following:
Arm yourself with information. A lot of info is available here on the net. Sleepnet is a good place to start. For more info, go to http://www.narcolepsy.org/narc.links.html
(You'll see the link to Sleepnet there!)
Join Narcolepsy Network. It is our national support and information organization. Dues are $25 per year and include quarterly newsletters and a free copy of "Narcolepsy: A Guide to Understanding." Narcolepsy Network also provides contact information on state and regional support groups, information on Social Security Claims for persons with narcolepsy etc. Narcolepsy Network holds an annual meeting which is also attended by the foremost sleep disorder researchers who serve on the medical advisory board.
Through NN find a local support group and take your wife with you. Family members and friends of narcoleptics need information and support too.
Here's info: Narcolepsy Network, 277 Fairfield Road, Suite 310B, Fairfield, NJ 07004; phone: 973-276-0115; fax: 973-227-8224; e-mail: narnet@aol.com

Jason, and any other persons with narcolepsy, you will find your way. Know that you are not alone!

Feel free to contact me directly.
My e-mail address is nanzzz@socket.net.

Nancy Valencia

Follow Ups:

• Re: Any Suggestions??? Michael AG 4/11/99 (0)
• Re: Any Suggestions??? Kay 4/08/99 (0)

---