Accepting Narcolepsy: Advice for Patients and Their Families
by Alison Gothard

To be diagnosed with narcolepsy is both a terrible and a wonderful event. On one hand, you have just been told you have a rare illness that you have likely never heard of before and know very little about. On the other hand, it is a great relief to finally be told you're not crazy or lazy or any of the other things people have labelled you your whole life. There is usually a period of grief when realising that this problem is a life-long illness that won't be going away, but there is a great freedom in accepting the illness and learning how to make the most of your life within the limitations it places on you.

When I was very young, in grade one, my teacher called my mother, concerned because I fell asleep in class almost every day. Although it was considered strange, it was decided that nothing should be done about it as I was not disrupting the class and my grades did not suffer from my naps. It just became known that I would fall asleep on my desk and would wake up later with no harm done.

In high school, I was always very sleepy. Teachers would comment that I was too quiet and didn't participate in class. Truthfully, I was not listening to them for a good chunk of the time, because I was trying to read ahead in my book and get ahead of class so I could have some quiet time at my desk toward the end of class. Again, I was an excellent student that did not cause trouble, so most of my teachers accepted this. However, I was often seen looking like a zombie and was very frustrated by teachers and fellow students that told me to "just smile". They couldn't understand the weight of the sleepiness I was experiencing. Toward the end of high school I was sent home from school several times because I would burst into tears when anyone would suggest I wasn't trying hard enough. I was frustrated and angry that nobody could understand that I was doing my best, and that my sleepiness was beyond my control.

After high school I had several jobs, all of them ending due to my sleepiness. The first lasted six weeks, another lasted two weeks, and my record for holding down a job is four years. However, the four-year job was hellish for me, as I was constantly being berated for making errors, falling asleep at my desk, and sleeping through business meetings. Eventually I started doing research on the internet and contacted a sleep specialist, who said it my symptoms sounded like textbook narcolepsy.

Having a name for my problem and some science to back it up was wonderful. I thought if I showed my employers that this is real and explained how it works, that they might accept it and accommodate me with naps and different work hours so I could perform my job better. To my dismay, they didn't believe me. In their minds, since they had never heard of this disease, they could make up their own rules about how it should be handled. One insisted that I should just drink coffee all day. The other tried to give me some pills she was selling through an MLM scheme, because she truly believed they were capable of curing any ailment (including cancer and HIV). Eventually they fired me from my job, but I was happy to leave these people that were only putting me down and making me ill with their unreasonable demands and forced sleep deprivation.

As I told my friends about narcolepsy, some of them tried to offer a magic cure for the disease. Caffeine, peppermint tea, an exercise routine, vitamins and herbal supplements, organic foods. It is human nature to want to cure a loved one of their disease with a wave of a magic wand, but it is misguided when the person giving advice does not actually understand the cause of the disease. If you are a friend or family member trying to provide support, the best way to help is just to listen, and your loved one will tell you if there is any way they would like you to help out (offering rides when they cannot drive, for example). Pushing the latest fad remedy on them is only going to make them shy away because they don't feel that you understand what they are going through.

Sometimes families and the patients themselves are uncomfortable with the idea of taking stimulants just to stay awake long enough to go to work or school. When cataplexy is treated with antidepressants, there is the stigma of mental illness added to the problem. Some people think having to take an antidepressant means you must be "crazy", and nothing could be farther from the truth. Whether such a drug is taken for depression or for cataplexy, it is merely a treatment for a chemical imbalance in the brain, just like insulin is a treatment for high blood sugar in diabetics. It is a necessity for living.

Once the narcoleptic has accepted the illness, there is still a constant barrage of magic cures being thrust upon her. Many people are absolutely convinced that homeopathy can cure narcolepsy. However, these well-meaning people do not see that narcolepsy is a neurological disease that currently cannot be cured, only treated to improve the quality of life. Some things may be curable with homeopathic remedies or eating specific foods. However, narcolepsy is a neurological abnormality. You can't cure Alzheimer's, Parkinson's, multiple sclerosis or other such diseases with homeopathy. Just because narcolepsy doesn't appear to be as debilitating does not mean it is any less a physical ailment. It was discovered in 2001 that narcoleptics patients lack a certain type of cells in the brain. These cells produce a chemical called orexin or hypocretin that are secreted during the day to keep you awake. Without the brain secreting this chemical, the narcoleptic experiences the extreme and uncontrollable urge to sleep. Doctors are examining this chemical in hopes that maybe it can be taken in pill or injection form to keep narcoleptics awake, but currently that science is in its infancy and is years away from being available as a treatment or cure for narcolepsy.

The current standard treatment for narcolepsy is stimulants to combat sleepiness, and antidepressants for cataplexy. Stimulants may be amphetamines or a new non-amphetamine drug called Modfinil (Alertec). Antidepressants tend to be in the SSRI class, although exactly how they prevent cataplexy is still unknown. Even with drugs, it is important to allow yourself scheduled naps if you feel they are necessary. When your body is screaming at you to stop and lie down, you need to listen! Family and friends need to be sensitive to this and not try to tell the narcoleptic person to just ignore it. I have read an estimate by a sleep specialist that the sleepiness of a narcoleptic person is equivalent to a normal person who has not slept in 40 hours. In this state, it is impossible to function and you MUST rest or risk injury and errors in whatever task you are trying to perform. Driving is especially dangerous in this state, so I frequently pull over to the side of the road or into a parking lot and sleep for an hour before continuing. It is not worth risking your safety to be somewhere at a specific time. For me, it took falling asleep at the wheel and hitting another car to understand that.

Diet also plays a role in wakefulness, although it is not the be-all-and-end-all. Every narcoleptic is different and has different triggers for sleepiness. However, there are many foods that commonly make people sleepy and they can be avoided or eaten at night when it is appropriate to be sleepy. Milk and bread are probably the most commonly sleep-inducing foods. Pasta puts me to sleep in minutes. I have also heard reports of peanut butter and bananas causing sleepiness. Generally, eating protein-rich foods such as meat and eggs for breakfast and lunch and avoiding dairy and a lot of starch during the day helps you stay more alert and reduces the need for naps. Personally, I avoid caffeine and refined sugar, as they may cause a surge in energy for a short period of time, but when the effects wear off I feel extremely drowsy and have to sleep. If I need to drive a long distance, I will drive until I start to feel tired, then pull over for a nap and/or a cup of coffee before continuing. I especially avoid caffeine after 3PM unless absolutely necessary for driving, as caffeine late in the day disrupts my sleep and results in me losing most of the following day to sleep.

Talking to other narcoleptics is a great way to learn tips and tricks to stay awake and cope with the daily trials of the illness. If there is a support group in your area it is worth the effort to go to a meeting. There are also many resources online and fellow narcoleptics willing to chat and offer support. For information and a list of links to help you in your research, visit the Sleep Wake Disorders Association of Toronto web site at