Shhhh!!! I’M SLEEPING!!! Living with Narcolepsy’s Hallucinations

by julie on September 28, 2014

narcolepsy noise dreams hallucinations sleep paralysis
Dear Hypnagogic Hallucination Version of My Boyfriend,

SHHH!! I’M SLEEPING!! Seriously, dude. You come home while I’m napping and wake me up from my precious naptime. I have narcolepsy and I NEED my sleep. But no, YOU are home and apparently, you could care less.

I’d tell you to BE QUIET but, hmm, I’m paralyzed.

You stomp around like you own the place – singing, burping, laughing and talking to yourself. Can’t you see I’m laying in bed, sleeping?! Well, I was sleeping, but now I’m not. Thanks to you.

And now that I’m awake, why not stop to say hello? How rude!

Wait, is it you or our obnoxious loud neighbor? Hopefully I’ll get a glimpse of you to confirm.

Is this REAL? I see the door, and it looks real, but sometimes it’s confusing with narcolepsy… Hmm, I’ll lift my arm, and if I see my arm raising in my vision, I’ll know this is real. Wait, I can’t lift my arm. Still paralyzed. Damn it.

Oh, now you’ve turned on the shower. That’s DEFINITELY our shower. But you showered right before you left home an hour ago. You’re weird.

Xoxo,
Sleep Paralyzed Version of Your Girlfriend Julie

What are hypnagogic hallucinations and sleep paralysis?

Hypnagogic & hypnopompic hallucinations are vivid hallucinations upon falling asleep or waking – often involving hearing, feeling touch and seeing figures in the room.

Sleep paralysis is the inability to move one’s body while falling asleep or waking. The paralysis may last a few seconds to a few minutes during which time one is unable to move at all, not even a finger.

People without narcolepsy can experience these too, usually when stressed or sleep deprived – they just tend to affect people with narcolepsy much more frequently.

Although my nighttime medication greatly reduces the frequency, I still have these mostly during naps. Sometimes it’s a scary intruder, recently it’s been this loud version of my boyfriend who only comes when Alex is away. For the record, the real Alex is a great singer and always considerate of my sleep habits – he doesn’t want to wake the beast. Now, I discount almost everything I experience around my sleep-time, because it probably didn’t happen.

{ 10 comments… read them below or add one }

Angie September 28, 2014 at 9:57 pm

It can get so confusing! I haven’t tried the trick of lifting my arm to discern which is happening at the moment (hallucination or dream) but it seems that if I’m in bed, it’s a dream and if I’m somewhere else when it’s all over, it was a hallucination. Things are so real either way, that I’ve ignored emergency sirens in real life on more than one occasion; one being a fire to an adjacent town home! Thank God for sprinklers!

Reply

Lisa September 29, 2014 at 1:40 am

Experienced HH all weekend. Have been sick with a cold & napping more frequently. Most intense I’ve had in a while. Horrible time trying to come out of the paralysis.

Reply

gaila October 3, 2014 at 1:52 pm

Wow! I’m 47 years old and just recently got diagnosed with narcolepsy. Ive had it for at least 30 years, undiagnosed. Its been hell and i thought the diagnosis would be life-changing, but it wasn’t. To read about the hh other people experience is amazing!! I have them alot, and i try to explain what they’re like and no one including my sleep doctors truly understand! They look at me like i’m nuts! Then i read these posts here, and it’s like i wrote them!! I experience the same things, especially when i’m taking a nap and need to wake up to go somewhere, i keep dreaming over and over, or should i say seeing myself over and over sitting up and doing exactly what i would do if i really was getting up! I can hear every word on the tv. Im awake and yet not one finger is moving! Im trapped inside myself. Thanks for sharing! I felt sooo alone, until this moment!

Reply

Susan October 8, 2014 at 9:56 am

Hi Julie! I have been reading your every post since I read your book about half year ago. This has become so important to me! I have been struggling with tiredness a long long time and I have been having those sleep paralysis and hallucinations with them about 3 years now. And I feel that you are the only one who knows what I am talking about. I have not been diagnosed with narcolepsy and I don’t know if I have it? I have a treatment for those sleep paralysis and it helps to lessen them. Before, I tought that I can’t have narcolepsy beacuse I believed that narcoleptics fall asleep all the time in whatever situation. That was what my doctor kept asking about: “Do you fall asleep while talking?, do you fall asleep when eating?, standing, walking? etc. And I kept answering: “no I don’t “. So I did not get tested. That was when I fist understood that they were considering that I might have narcolepsy. Later I was lookin for information and I found your blog and your book! Tiredness is my everyday buddy and forces me to take a lot naps and it makes life more challenging. Now I have also had few times when my knees have suddenly “drop” me half or 1 ft down, when something suprising has happended. And sometimes feelings of weaknes in my knees, that I think maybe don’t show on the outside. I’m considering to go to a sleep specialist and find out if I have narcolepsy or something else what makes me so tired.
Thank you so much Julie!!!!

Reply

julie October 8, 2014 at 12:09 pm

Hi Susan, So sorry to hear you’ve had sleep paralysis for a while now and also daytime sleepiness and what sounds like mild cataplexy. Please visit a sleep specialist who is very familiar with n+c and pursue this. Unfortunately many doctors know very little about narcolepsy so you must sometimes educate them and keep pursuing answers. The good news is that diagnosis is an opportunity to better understand and treat your symptoms. There is a brighter future ahead. Keep going! Thank you and cheering for you, Julie

Reply

Phyllis Hasian October 12, 2014 at 1:23 am

Hi Julie, I love reading everything you write. I was only diagnosed with Narcolepsy with Cataplexy about 2 years ago, however I know now that I have had it since I was a child. As long as I can remember I was afraid of the dark and would never sleep alone, thank goodness for an older sister. We always had to share a bedroom till we were in high school and my father added on to our house so we could finally have our own rooms. Well that scared me to death, the thought of her not being there when I had my nightmares which I now know included hallucinations and sleep paralysis. I would still go sleep with her when I was scared and she would hold my hand. Some of my worst memories to this date were the nights I was sure someone was in my room, because I know I saw them and on occasion they would touch me, but I could never make a sound. My mother passed away a couple years ago but I was finally able to tell her that I had vivid memories of her mother tying me to the bed at night so I would not wiggle. She just could not believe I really thought that, my grandmother was really so sweet and would never really do that. She wondered why I never told her about it when I was young, but it just seemed so real to me that I was too afraid to say anything to anyone as I knew no one would believe me; but it was so real to me! No one ever believed my stories, it is so comforting to know today what was really happening to me. I am just so grateful that I always had my sister who learned even through High School that when I was afraid to just hold my hand in the middle of the night so I could be comforted and go back to sleep. I hope that parents can learn to believe how real these dreams or hallucinations are and will not just brush it off. Hopefully all the work you do with Narcolepsy awareness will help all the children who are afraid of the dark. Thank you for all you do!

Reply

julie October 12, 2014 at 3:11 am

Thank you Phyllis for this amazing thoughtful comment. Wow, I am speechless from your frightening experiences with HH and SP related to narcolepsy since you were young. I’m so glad your sister comforted you. You are so brave to have taken on narcolepsy for so long and I’m cheering for you! THank you so much for sharing your experience. This drives me to continue raising awareness! Sending peaceful nights and wakeful days your way, Julie

Reply

Samantha October 14, 2014 at 5:04 am

I love this!!! I cannot explain how comforting it is to read this post and the comments and to no longer feel so alone. I got “diagnosed” last year with narcolepsy. The only reason I use quotation marks is because my doctor is 100% positive that I have narcolepsy. However, no one fully explained to me exactly what I needed to do for my sleep study and ended up having sleep attacks between naps so only two were recorded on the eeg. Thank goodness for an amazing neurologist and P.A. who fought my insurance for months to get the $600/month medicine covered. I hate trying to explain to my coworkers why I’m so tired all the time. I always get “you’re too young to be so tired! Just wait till your my age and then you can say you’re tired!” All while knowing full well I have narcolepsy! Not to mention having HH in response to your alarm clock. I can’t tell you how many times I have overslept because instead of waking up my alarm becomes intertwined in some strange HH. Not to mention always having to wear long pants to bed. Otherwise it never fails I have a HH thinking I’m naked with people standing around my bed staring at me. I don’t think anyone without narcolepsy will ever be able to understand the true terror of being aware to your “reality” surroundings yet having such strong hallucinations you don’t even question if they’re real until a few minutes into it. All the while being completely paralyzed and not being able to scream for help, much less even signal for help. I always feel like I can’t breathe when I’m having sleep paralysis too. I’ve scared the you know what out of anyone around me once I can finally move because I shoot up out of bed, taking in a huge gasp of air.

Has anyone else on here noticed if they don’t take their medicine they have far more HH and night terrors?
Also, does anyone experience their eyes flickering back and forth when they are fighting a sleep attack? It happens to me a lot while driving and I will go miles and not have a single memory of driving them once I can pull myself out of the attack with a Ritalin or a large energy drink.
Can’t tell you any more how much it means to me to know there are people who actually understand what I go through every single day.

Reply

Mia October 14, 2014 at 3:12 pm

Just found your blog and from what I’ve read so far, I love it. I was diagnosed with narcolepsy with cataplexy my junior year of high school during the winter of 2005-2006. My hallucinations usually happen during my late afternoon/early evening naps, and it sounds like mine are similar to yours except it’s my roommates and not a boyfriend. I’ve gotten used to the hallucinations since I’ve had those since I started having symptoms in 2003… it’s the sleep paralysis (with hallucinations) that is new to me. The first time it happened to me a little over a year ago, I had the terrifying feeling that something was in the room with me and felt like my heart was beating out of my chest. I couldn’t move my body but was able to move my eyes towards the bottom of the bed which is when I saw this demon-like creature climbing up on the bed towards me. Somehow I shook myself out of it, did some Googling, and was shocked that the sleep demon/succubus/incubus/whatever was a super common thing. It freaked me out, but a few articles said that sleeping on your back is when it is more likely to happen (so I do a whole lot of sleeping on my side now). I’ve had the sleep paralysis visions two other times. Once was when a huge creature came through my bedroom door, approached me, leaned down to whisper something, and then I shook myself from it. The most recent one was quick, but I shifted my eyes to the left and saw the demon from my first hallucination just chilling on the pillow next to me. Fortunately, my second two were a lot less scary because in my head I knew it wasn’t real, so I close my eyes and just wait until I can move. The biggest difference between my hallucinations and the sleep paralysis hallucinations for me is that during the ladder, I know I am awake and am actually looking around my room (albeit, with my brain still thinking I’m seeing some sort of dream at the same time, I’m not sure) and the second I shake myself from it, I am aware that what I just saw wasn’t real. My hallucinations are more like VERY vivid dreams that once I wake up naturally (not sure if it’s minutes or seconds after the hallucination) I remember and have to figure out whether they were real or not. Sorry for the novel, but thought I’d share!

Reply

Egr October 20, 2014 at 2:25 pm

You’re amazing Julie! I go to Florida State University and have a 3.97 GPA and have always worked my butt off to be successful. Then I got narcolepsy and I even had to take a medical withdrawal this semester. I will be reading your blogs, book, and watching your videos to help me find my strength as I too fight this obstacle I never thought I would have to take on. You are so inspirational!!!

Reply

Leave a Comment

Previous post:

Next post: