Knocked Out by Narcolepsy?
I was diagnosed with narcolepsy in 1989. However, the medication that I take (Dexedrine 5 milligrams tabs 2 to 4 times a day) does not seem to be working as it once did. I take medication vacations on the weekends thinking that I will regain the same action that it once gave me. Are there any new meds on the market that you can suggest? Also, narcolepsy is a very degrading illness. The Net would be a great place to expose the condition. Thanking you in advance....
Narcolepsy can be disabling. A neurological disorder, it affects people by making them excessively sleepy at unpredictable times. People who have it may find it unbearably hard to stay awake during meetings, music recitals, while driving, during a conversation, whenever. Then, at night, it may be difficult to get restful sleep, in part because of vivid dreams.
You didn't mention the other condition usually associated with narcolepsy, called cataplexy, a sudden loss of voluntary muscle control without warning, usually triggered by strong emotion. People with cataplexy suddenly fall to the ground when anything makes them laugh or cry. Physical exercise can cause the reaction too, which usually lasts for just a few seconds.
About 1 in 2,000 people have narcolepsy. Lots of times it's not diagnosed because people ignore their chronic sleepiness. There are also mild forms of cataplexy that cause people to drop objects or sit down suddenly.
The root cause of narcolepsy is quite a mystery to neurologists. At Stanford University, researchers are studying a colony of Doberman pinschers, Labrador retrievers, and mixed breeds that have inherited the condition. They have linked the condition in dogs to a single gene that looks a lot like one of the human genes involved in managing the immune system. In humans, researchers found a gene called HLA-DR2 and/or HLA DQwl in 98 percent of people with narcolepsy - but one quarter of people without the condition also had HLA-DQwl, so there must be something else going on.
A neuroscientist at the University of California in Los Angeles has pinpointed a group of neurons that seem to fire at the wrong times, causing a mixup of waking and sleeping states. People with narcolepsy can go on dreaming while they're awake, and when they're asleep, their brains may be operating as if they were awake. Some scientists think that cataplexy may happen when a person shifts into the paralysis of REM sleep during waking hours.
Doctors tend to prescribe tricyclic antidepressants like imipramine (Tofranil) or protriptyline (Vivacil) for cataplexy. They usually rely on stimulants to treat narcolepsy. But these can have significant side effects, such as anxiety, dependence, euphoria -- and the one you describe, tolerance over time. Dexedrine is an old treatment and probably not the best choice any more.
A company called Cephalon is planning to file for regulatory approval to sell one new drug, called modafinil (Provigil) this year. It's supposed to provide a substantial decrease in sleepiness with only minor side effects. Another possibility is yohimbine, from the bark of a West African tree, Pausinystalia yohimbe. In a small 1994 test, seven of eight men who took yohimbine were able to stay alert all day. One drawback is, again, the possibility of building tolerance. And some people have problems with stomach upset and flushing. But you might want to check with your doctor about either of these.
In terms of non-drug treatments, it would be interesting to look at brain wave biofeedback. I think people can learn to condition fast-alert waves if they start to feel sleepy. If it works with your schedule, some people have also found several short catnaps (15 to 20 minutes) throughout the day to be a good coping strategy.
The National Sleep Foundation, at (202) 785 2300, is collecting a database of people with narcolepsy, their family histories, and biological samples. They hope to connect patients with researchers for clinical studies. There is also a patient support group called the Narcolepsy Network.