Narcolepsy is different for everyone that has it. It can range from severe and debilitating to something that is manageable. Just because mine is managed well at the moment with a Ketogenic diet and other alternative treatments, it doesn’t mean that I don’t understand or have sympathy for those that are not so fortunate. I feel very lucky to have made the changes I did and that they are working for me. But the future is never known and currently there is no cure. That’s why I am so determined to live in the present and fulfill my dreams while I can. So here is a brief introduction to what Narcolepsy can be. Feel free to comment on what I am missing.
Excessive Daytime sleepiness
Don’t get me wrong, I know everyone says they are tired all the time these days, but unless you have a medical issue, I don’t think your sleepiness compares to a PWN’s (Person With Narcolepsy’s). If you think you might be have narcolepsy, check out this site and talk to your doctor. Often it feels like a war inside my brain just to keep my eyes open. Fighting it for long just brings in a huge amount of brain fog and often a headache until I’m able to sleep. Generally I’m able to resist the urge to sleep unless I am in a place where it is convenient to sleep like sitting in a chair or on transportation. But until I do, my brain is basically useless. I might as well be sleeping.
However, there are people with more severe symptoms that are not able to resist the way I do. They can simply fall asleep doing anything. It is this version that is generally depicted in movies since it seems hilarious from the outside. But take a moment to imagine how the person feels that is unable to control such a vital function of their body. I hope you won’t laugh at them if you meet them.
This can be especially terrifying when accompanied by a hallucination as described below. Often in the moments just before or after sleeping, a person with narcolepsy can find themselves unable to move their body.
Hypnagogic and Hypnopompic hallucinations are visual, auditory, or tactile hallucinations upon falling asleep or waking up. Since in narcolepsy the boundary between being asleep and awake is not so clear, it makes sense that hallucinations, or dreams occur while awake. These can be as trivial as a conversation with a friend to horrifying scenes of attacks and abuse. While they are occurring it is almost impossible to discern that they are not real. Often in the early years I had a hard time believing that these incidents weren’t real and even now struggle to tell the difference between some hallucinations and reality. They also have an impact on memories. I believe some of my memories of actual events were (hopefully) hallucinations but there is no way for me to find out for sure.
Is not present in all PWNs but causes sudden loss of muscle tone, generally when feeling emotions. This usually is a weakness in the arms, legs, trunk, or jaw. In my case it has mostly been present in my hands and arms, and more recently in my legs. The frequency of this phenomenon varies a lot with anything from a few times a year to multiple times a day.
Disrupted nighttime sleep
Although people generally assume a person with narcolepsy can have all the great sleep they ever desired, that is not the case. The timing of sleepiness in the brain is all mixed up so no matter how tired we feel, sometimes we cannot get to sleep at night. Another of the reasons we are so excessively tired during the day is that our nighttime sleep is often fragmented, meaning we wake up a lot even if we don’t remember it. My sleep study says I had “34 spontaneous arousals from sleep” in 8 hours.
For more information about Narcolepsy there are a variety of resources. Here are some of my favorites also listed on the main resources page: