Question:

With a comfirmed diagnosis of narcolepsy and all of the other amphetimines tried will little quality of life provided can Desoxyn be a… Let me just say it. I`ve tried desoxsyn in the past with great results. When I changed doctors he put me on adderall which keeps me awake but not alert and unable to get anything done. Three doctors later no one will allow me to try it again. They throw their arms in the air and say they don`t know what to do for me but will not let me try what has worked in the past. I`m frustrated to the point of depression. I thought this treatment was about quality of life. Why are so many so resistant to give it to me?

Answer:

Assuming you have been correctly diagnosed with narcolepsy, then your question really centers on appropriate treatments of this condition. Before answering that, it might be useful to provide a brief overview of this disease.

Narcolepsy affects about 1 in 2000 people. Narcolepsy is characterized by excessive sleepiness and abnormal intrusions of rapid eye movement (REM) sleep phenomena into awake time. Typically, during REM sleep, our muscles are inactive (except for our breathing muscles and eye muscles) and unable to move. In individuals with narcolepsy, this “paralysis” of muscles may occur during wakefulness (known as cataplexy, usually brought on by strong emotions) or during transitions between sleep and wakefulness (sleep paralysis). In addition, dreams may intrude up in these times as well (known as hypnagogic or hypnopompic hallucinations). Other symptoms of narcolepsy may include poor nighttime sleep and automatic behaviors (performing tasks without being aware of what you are doing or having recall of having done it).

While true cataplexy (brief, sudden, bilateral loss of muscle tone brought on by strong emotions) is considered very strong evidence of narcolepsy, the other symptoms listed may be seen in individuals without narcolepsy. Furthermore, individuals diagnosed with narcolepsy may not have any or have only some of the other associated symptoms, though they are always sleepy. The diagnosis of this condition is usually determined by a Sleep Specialist after taking a thorough history, performing an examination, and obtaining objective testing – a sleep study and a daytime nap study (known as a Multiple Sleep Latency Study or MSLT).

If we accept that your diagnosis is narcolepsy, then there are several available options that are FDA-approved for the excessive daytime sleepiness. The traditional treatment has been with stimulant medications. There are a number of these that are available and FDA-approved, including caffeine, modafinil (i.e. Provigil), methylphenidate (i.e. Ritalin), and dexamphetamine (i.e. Dexedrine). Aside from stimulants, a newer non-stimulant medication, Sodium Oxybate (i.e. Xyrem) is also approved for the treatment of cataplexy and excessive sleepiness related to narcolepsy. Desoxyn, the trade name for methamphetamine (the drug you mention), is not FDA-approved for the treatment of narcolepsy. The reason for this is that methamphetamine, as you probably know, is highly addictive and subject to the development of tolerance and abuse. This drug has such a huge potential for problems that it is not considered a long term solution for the management of sleepiness in narcolepsy.

You and your doctors should review your studies and treatments to find the right combination of medications and behavioral modifications to control your symptoms. Simple maneuvers, such as practicing good sleep hygiene (please see the website for details) and scheduled regular naps may help tremendously. Along these lines, it is important for those with narcolepsy to avoid situations that may worsen their symptoms – such as doing shift work, having a job that requires night-time calls, or any job that requires continuous attention for long periods of time without breaks. Most patients can have their symptoms almost completely controlled with a combination of medications and behavioral modifications.

To learn more about narcolepsy or other sleep disorders, please visit the American Academy of Sleep Medicine. In addition to information, the website contains a list of Sleep Centers across the country so that you may locate one near you. The Narcolepsy Network also provides information and links to support groups for those with this condition. Good luck and here’s to good sleep!

For more information:

Go to the Sleep Disorders health topic.