Taboo, a part of having Narcolepsy.
I vividly remember the day that I awoke in the middle of the night in a panic as I realized my bedroom was filled with smoke and my house was on fire! I could see, smell, even taste the smoke it was so thick. Full of adrenaline, I frantically woke my husband to get our daughter out as I reached for the phone to dial 911. He quickly jumped up and then... just stood there, staring at me in confusion. He did not see what I did, he said there was no smoke! I was confused and even angry, why couldn’t he see what I saw? Why wasn’t he jumping into action to save our family? As he questioned me, the smoke disappeared, I was at a loss for words for what had happened.
This became a regular scare for me, is it real this time or not? I have to wake my husband every time to this day, just to know for sure. I would later discover that these were hypnopompic hallucinations, a symptom that can occur in people who have narcolepsy when they are waking up (or hypnogogic hallucinations upon falling asleep). A hallucination can be described as a sensory experience, perception or phenomena that are not actually present. This symptom is not always easy to talk about, some may even find it taboo. For some people with narcolepsy though, it can be a part of life.
Let's talk about what it really is, a symptom of a neurological disease, not something to be embarrassed of.
I filmed an awareness video on this very experience last year in Portland, Oregon, for the Narcolepsy Networks Lift Us Up campaign. You can view it at https://narcolepsy-liftusup.com/stories/shannon/
Hypnopompic hallucinations refer to a bizarre sensory experience that occur during the transition period between a sleeping state and wakefullness. When you are slowly transitioning from a sleepy state but not yet fully awake, you begin seeing vivid shapes, hearing sounds, or even sensing touch. These differ from dreams in that they are perceived as occurring while you are semiconscious, making you believe they are in fact really happening or did happen, even after you are fully conscious and awake. Had my husband not been there that night, I would have called 911.
Other examples of hypnopompic hallucinations I have experienced are as simple as hearing music or voices that are not there, to as extreme as believing a home invasion is occurring or that my house is on fire as I mentioned above. Other people with narcolepsy have told of experiences as horrific as feeling someone sitting on their chest choking them, or children experiencing terrifying nightmares in this realistic state of mind.
These hallucinations are often accompanied by another symptom of narcolepsy, sleep paralysis, a temporary inability to move or speak upon waking or falling asleep, for a few seconds to several minutes. Sleep paralysis feels like you are trapped inside your own body, a scary sensation on its own, coupled with hallucinations can be extremely horrifying for those that experience it.
While the majority of people who experience these phenomena (hallucinations) also have a type of sleep disorder such as narcolepsy, 6.6% of the general population have also reported experiencing a hypnopompic or hypnogogic hallucination.
The Average time for diagnosis of narcolepsy is 8-15 years and the average age of onset is 11-25. There are few treatment options available and there is no cure. Narcolepsy affects approximately 1 in 2,000 people, making it a rare disease. Narcolepsy is a serious neurological condition that can impact daily quality of life if not treated.
Hallmark symptoms of narcolepsy include: (Not everyone with narcolepsy experiences all of these symptoms or in the same way.)
Excessive daytime sleepiness (bouts of exhaustion compared to going 48-72 hours without sleep)
Disrupted night time sleep
To learn more about narcolepsy and sleep disorders you can visit the following websites:
Narcolepsy Patient Advocate
Public Speaker/Program Mentor, Rising Voices of Narcolepsy
Rare Disease Patient Advocacy Professional
Advocate in the Spotlight, Rare Advocacy Movement