There are only two types of narcolepsy, but each person with the disorder has a different experience. It can range from severe and debilitating to manageable. Both types of narcolepsy can change throughout the lifespan. There are also external factors that seem to affect the presentation of certain symptoms.
The two types of narcolepsy are Type 1 (previously termed Narcolepsy with Cataplexy) and Type 2 (previously termed Narcolepsy without Cataplexy). It is possible for a person’s diagnosis to change from Type 2 to Type 1 as symptoms develop. Sometimes the person becomes aware of symptoms of cataplexy that were difficult to identify. Both types of narcolepsy can be treated with medication. They cannot be cured at this point in time.
How are the two types of narcolepsy different?
There is only one difference in symptoms between the two types of narcolepsy. Type 1 includes the symptom of cataplexy, while Type 2 does not. This is interesting because recent research has uncovered how Type 1 Narcolepsy is caused by the immune system attacking the hypocretin in the brain. The cause of Type 2 Narcolepsy remains unknown.
Excessive Daytime sleepiness
I know everyone says they are tired all the time these days. But Excessive Daytime Sleepiness (EDS) is more than what the average person experiences from day to day. A person with narcolepsy (PWN) can have periods of extreme sleepiness that can be compared to what a person without narcolepsy might feel after 48-72 hours awake.
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 public transportation. But until I do, my brain is basically useless. I might as well be sleeping.
Hypnagogic and Hypnopompic hallucinations are visual, auditory, or tactile hallucinations upon falling asleep or waking up. These can be as trivial as a conversation with a friend to horrifying scenes of attacks and abuse. Check out my description of what it was like growing up with these horrifying creatures here.
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.
This can be especially terrifying when accompanied by a hallucination as described above. Often in the moments just before or after sleeping, a person with narcolepsy can find themselves unable to move their body. Often it occurs without the nightmares. For example, I want to check if my alarm is set and find myself unable to move my body.
Cataplexy is only present in Type 1 Narcolepsy. It causes sudden loss of muscle tone, generally when feeling emotions like pleasure, surprise, anger, or frustration. This can differ from person to person. Cataplexy often presents as a weakness in the arms, legs, trunk, or jaw. It can result in full body collapses, and the attacks can last from a few seconds to several minutes.
A less talked about cataplexy trigger is sex. People with narcolepsy may experience cataplexy during sexual encounters, but it may be difficult to talk about and has not been studied thoroughly. I did find one report where narcolepsy was diagnosed due to orgasmolepsy or cataplexy during sex.
My experience with cataplexy
I could probably write a book about the awkward encounters cataplexy has caused in my sex life. But outside the bedroom, it has mostly been present in my hands and arms, and occasionally in my legs. The frequency of this phenomenon varies a lot with anything from a few times a year to multiple times a day. Sometimes it is easy to identify what triggered the event. Other times we are left wondering what we were feeling that caused the episode.
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. With both types of narcolepsy, our brains mix up the timing of sleepiness, so no matter how tired we feel, sometimes we cannot get to sleep at night. People with narcolepsy often experience fragmented sleep, in other words, 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.
Unfortunately, there is generally a large delay between the onset of narcolepsy symptoms and actual diagnosis. In one recent study, the mean number of years between the onset of symptoms and correct diagnosis was 14 years. Narcolepsy is difficult to diagnose unless all of the symptoms are present. Usually, a multiple sleep latency test (MSLT) is done for definitive diagnoses. This test is performed at a sleep disorders clinic and requires the patient to stay overnight and the following day. A specialist then examines the amount of time it took to fall asleep or sleep latency. However, this is not a perfect test as there are many factors at play when it comes to falling asleep.
Doctors can recommend the best course of treatment considering the overall health of the patient. Some treatments are just for excessive daytime sleepiness, while others treat additional symptoms. Patients should keep track of how the medication is working and continue to update their doctor to adjust the dosage or change types of medication until they find an effective treatment. Since every person is different, there is no one treatment that works for everyone. Some people with Type 1 Narcolepsy also require treatment for cataplexy.
While medication can be one part of the equation, I believe there is a lot more that goes into treating both types of narcolepsy. Read my list of tips and tricks compiled from years of learning to live life sometimes medicated and other times without.
Where did narcolepsy come from?
Every year there is new research about where narcolepsy came from. Just months ago, a study was released that demonstrated how the flu virus may be involved. You can read the complete explanation of the study by Dr. Mignot here, or a more reader-friendly version I was inspired to write for The Mighty, here.
Where do I learn more?
For more information about narcolepsy, there are a variety of resources. It may be helpful for you to read or hear more personal stories from people with narcolepsy. Project Sleep is a great resource if you are feeling alone. Check out their amazing Narcolepsy: Not Alone campaign and add your photo!
I would also recommend watching the video series they recently published. Depending on where your journey with narcolepsy has taken you, I bet you can relate to parts of these stories. Even after more than ten years of living with narcolepsy myself, I found the series deeply profound and wrote an article about it here.
Last, I would also like to be a resource for you! Send me a message, comment, or contact me on any of the social media platforms. I would love to hear your story!
How about more technical information?
Of course you may not be interested in others’ experiences just yet if you are focused on deciphering your own. It is fascinating to read about research and documented symptoms and cases of narcolepsy. Here are some of my favorite resources that I hope are also listed on the main resources page: