Narcolepsy and Daytime Hallucinations
It’s one of the most common symptoms and one that brings up a lot of discussion and debate. However, there’s one thing that I have never heard anyone talk about, and it makes me wonder if this strange occurrence only happens to me: Am I the only one that experiences hallucinations while being fully awake?
Hypnagogic and hypnopompic hallucinations in narcolepsy
When it comes to narcolepsy, hallucinations are usually divided into 2 types: hypnagogic and hypnopompic. As I understand it, both of these are associated with sleep. Hypnopompic hallucinations occur while a person is waking up, and hypnagogic hallucinations occur while falling asleep.1
While hypnagogic hallucinations are a common symptom of narcolepsy, they also occur in people who don't have narcolepsy. They are often accompanied by occurrences of sleep paralysis and extremely vivid and frightening visuals and/or sounds.
But what I am most curious about is whether narcolepsy can evoke hallucinations that aren’t linked to being in a semi-conscious state.
We all know that when it comes to a condition like narcolepsy, there is no rulebook. Everyone is affected differently by different symptoms. Maybe because of this, and because there is still so much that we don’t know about narcolepsy, it drives me to believe that there is still a lot to uncover. So it could be possible that our hallucinations aren’t just restricted to moments related to sleep.
My history with hallucinations
My interest in this stems from almost 3 years of living with daytime hallucinations.
When I was younger, I experienced a lot of hallucinations, especially hypnagogic ones (while falling asleep). Over the years, they subsided, and I thought I was finally going to be free of these terrifying ordeals; but, unfortunately, the new phenomena I would soon experience would disrupt my life on a much bigger scale.
It’s one thing to experience hallucinations around your bedtime or wake-up time, but it’s another, completely different thing to navigate them during the day.
The beginning of my daytime hallucinations
When they first started, I thought it was simply a side effect of the stimulants I was taking because I had had a bad reaction in the past. But when I stopped taking the stimulants... they didn't stop.
It took me a long time to realise that what I was experiencing were hallucinations. This wasn’t only because of how real they felt, but because of how believable they were. They would be things like seeing mosquitos flying around or hearing a thud of something falling in the next room. These were things that, unless there was someone else there to disprove them, you would never believe hadn’t actually happened.
It was only when I began living with other people again that I began to realize that only I could see the mosquitos or hear the thuds. Only I could see something black crawling on the floor, yet the other person beside me would tell me that, yes, there was a black spot... but it definitely wasn’t moving!
Daytime hallucinations continue to pose challenges in my daily life
Despite using the past tense, I continue to experience this on a daily basis.
I don’t think anyone can understand just how much these daytime hallucinations can mess with your mind, and ultimately your life. If I had trouble concentrating before, now it’s almost impossible.
How can I sit down and work when I’m constantly seeing insects around me, or feeling them crawling on my skin? How do I sit and read a book when I hear something breaking in the kitchen, and when I go and check, everything’s fine? It’s a constant, tormenting cycle of verifying your own reality that is becoming not only exhausting but exceedingly unsustainable.
I don’t know why these daytime hallucinations started, or even if they are related to my narcolepsy or are possibly even an after-effect of the stimulants. Whatever the reason, all I know is that this is the one symptom that makes me feel completely crazy and totally alone, even within the community where I have always felt the most understood - the narcolepsy community.
Have you experienced daytime hallucinations not associated with the sleep-wake cycle? Share with us in the comments below.
Where are you in your narcolepsy diagnosis journey?