Questions About Narcolepsy

Is there a cure for Narcolepsy?
As of the date of this article, there is no known cure for Narcolepsy. There is some interesting research being conducted on the possibility of transplanting hypocretin-producing cells that has been successful in rats recently, but human trials are years from becoming reality.
Planet Narcolepsy encourages PWN and PWON (especially family members) to stay up to date on Narcolepsy research and participate whenever possible by donating blood, tissue samples, or even just medical records. The more information researchers and scientists have access to, the more likely they are to find treatments and cures in the near future.

How do they treat Narcolepsy?
The first line of treatment for Narcolepsy is to address the EDS. Usually that involves prescription stimulants such as Ritalin, Adderall, Concerta, dexemethasone, and others.
It would be lovely if a simple prescription for a single pill could help all patients, but it is rarely that easy. Most of us require months, even years, of frequent medication changes, dosage adjustments, and even playing with when to take medication. It can be an extremely frustrating and depressing road to relief, but relief is possible.
It is important to be patient and honest with your doctor and remember that you will not feel better overnight.
For patients who would prefer not to take prescription medications, there is information out there for a more natural approach. As with any condition, it is important to exercise, eat healthy, and be as fit as possible. There are supplements available that supposedly help with sleep and insomnia, however, it is just as important to talk to your doctor about herbs and supplements as it is about prescription medications.

Does Narcolepsy ever get better or worse?
Because Narcolepsy occurs when brain cells are damaged, it is improbable, if not impossible, for it to spontaneously get better, although most Narcoleptics will tell you that the severity of their symptoms will change from day to day and over time.
As for getting worse, there are mixed feelings in both the scientific and patient communities on that point. Some sources state that symptoms improve as Narcoleptics age, perhaps partly due to the decreased sleep needs of the elderly. Others, specifically patients I’ve spoken with, feel that symptoms tend to increase over time, although different symptoms seem to be primary at different stages (sometimes it is the EDS that is debilitating, sometimes it is Cataplexy that is an everyday problem).
What everyone seems to be coming (slowly) to an agreement on, is that if Narcolepsy is an autoimmune disorder, and hypothalamic cells are being destroyed, it stands to reason that once all the pertinent cells are gone, the disease CANNOT get worse; so there is a point where, theoretically, symptoms should plateau. On the other hand, this would depend on whether or not the patient’s Narcolepsy is actually caused by an autoimmune process, and the timing could be very different for each patient depending on how quickly the immune system is destroying the cells.

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