Narcoleptic Knights blog is written by a man with narcolepsy. His frequent posts talk about the struggles that this diagnosis has caused him. He talks about the symptoms of excessive daytime sleepiness and hallucinatory dreams. He talks about the side effects of medications that are prescribed for narcolepsy like Provigil and Zyrem. Perhaps of most interest, he talks about the fact that no matter what he does or what he takes, he is still going to have symptoms. Therefore, a lot of the blog posts deal with the issue of accepting his narcolepsy symptoms. For those of you interested in narcolepsy, he has some good links on the blog.
I find that acceptance of your sleep disorder, whatever it is, is crucial to a satisfactory outcome. For example, in the cases of narcolepsy and restless legs syndrome, it is rare that symptoms are 100 % eliminated with medications. So those people who cannot accept some symptoms, those people who insist on complete suppression of symptoms, are often those who end up taking too many medications or too high a dose of medications, and are always in a swing between symptoms and side effects. They are distressed.
Setting realistic goals is critical. A narcoleptic should not be an air traffic controller. The narcoleptic needs to adapt his or her daily activities to the condition; needs to plan a couple of naps per day, needs to carefully adjust the timing and dosing of the medications. Similarly, an insomniac needs to set realistic goals. A somewhat anxious person who has trouble getting to sleep or staying asleep cannot expect 9 hours of sleep every night. They cannot expect to feel great when awakening every morning, like on the sleeping pill commercials. They need to balance their symptoms against the sleeping pills, change their habits, and find a balance that is acceptable to them. After all, what other option is there?
Lastly, Narcoleptic Knights talks about the prejudice of doctors against narcoleptics, and I think there is some, and also against insomniacs. Many people just don’t know how bad, real, and scary these conditions are. The medications that treat them are “dangerous” or “additive.” But for most narcoleptics that I see, it is I who have to convince them of the importance of the medications; most are not in this to seek out amphetamine. Yet many doctors are still very reluctant to prescribe such medications, and they might question the diagnosis or try to get the patient to use a medication that has failed the patient in the past. This is one reason that for narcoleptics, it is important to have a perfectly performed diagnostic sleep study and MSLT.
It should go with them, perhaps with a consultation from an academic sleep center, to any new doctor they see.
J. Steven Poceta MD is a licensed practitioner of neurology and sleep disorders who has been engaged by Revolution Health. No information in this blog is intended to diagnose or treat any condition. The opinions expressed here are Dr. Poceta’s own and do not necessarily reflect those of Revolution Health.