My narcolepsy nightmare: never fully awake, never fully asleep
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- Опубліковано 10 лют 2025
- At 21, Jenny Lee-Gilmore was diagnosed with narcolepsy. In Little Miss Sleepy, she explores what it’s like to live with a neurological disorder that’s misunderstood and often misdiagnosed.
#Narcolepsy #Nightmares #LittleMissSleepy
Ever since Jenny was a child, she’s had vivid multi-sensory dreams. Upon being diagnosed with narcolepsy at 21, she discovered this was one of the symptoms of the condition. With no known cure or cause for narcolepsy, Jenny volunteers for a scientific research study in Montreal in the hopes of contributing to one day finding a cure. Through sharing her journey and experiences, Jenny hopes to bring awareness to the condition that is misunderstood and often misdiagnosed.
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Thank you for doing this. My partner has a sleep disorder called hypersomnia. He has a hard time talking about it and how hard it is for him to deal with. I appreciate your vulnerability in telling your story. You did an excellent job! Many thanks and good luck in your future! All the best! Nancy
Hypersomnia, is narcolepsy
@ Narcolepsy means an individual can't control REM cycles, so they can't guarantee restorative sleep, and this has a significant impact on daily function. Someone with idiopathic hypersomnia is able to sleep but they don't get restorative sleep. However, they can control REM cycles.
His is likely from multiple head injuries apparently and is not true narcolepsy even though it’s similar symptoms. Thanks again for the information and for presenting your story 🙂
amazing work! this is the closest ive seen anyone come to fully expressing the narcoleptic experience. the hallucination scenes were so close to my own. love that you used your passion for film to bring this kind of awareness
You are a beautiful and brave young woman. Thank you for sharing your story. I pray for your healing and continued strength.
Thank you so very much for creating this!! I cried watching it alone last night while I delayed going to bed to avoid the awfulness that was awaiting me. The part at the end when you said something along the lines of "if only one person watching this has narcolepsy, and feels less alone, it'll be worth it." ... I felt like you were speaking directly to me. Thank you so much for sharing.
I also watched it again today with my husband, which was nice because you put into words some deep feelings I hadn't been able to (or chose not to) express to him. I fully plan on sharing it with other close family members and friends to help them understand how I feel and the affects this has on me day in and day out. I am not yet medicated, and don't recognize myself. I've always kind of felt like I've been constantly held back from being the real me, because of the exhaustion, brain fog, and emotional triggers.. even before diagnosis.
Could you also thank your parents for me? I plan to shown this to my mom, and she has expressed similar feelings of guilt for not recognizing it when I was younger, and I want her to hear that portion to hopefully remove some of that guilt she carries. Even though I've told her there was no way she could have really known, I think hearing from your mom in the film may help her realize she is also not alone in that, and should not feel guilty. 🫶
You talk about it because A, people with narcolepsy need you and B, people in the chronic illness community need your story. Thank you for sharing❤
I'm so saddened to hear about what you have to experience each day, but what I've learned from this film may eventually help me to better understand the life of someone I may meet who's enduring this, and that is truly valuable. I always want to help people in any way I can, even if it's something as simple as support, comfort and understanding, and you've helped me potentially do that for someone else someday. That is huge. Thank you sincerely.
Jenny Lee-Gilmore really hit the nail on the head. It’s now been over 5 years of struggling to find a diagnosis and over 17 since we’ve noticed my symptoms. I am so very hopeful that projects like this will make it easier for people to get diagnosed faster and start getting the treatment they need. I just started modafinil last month (still not diagnosed but I begged) and it has been life changing. Not a perfect solution but a big help in my life as a full time student. Thank you so much for sharing your story and inspiring others to share theirs! I hope we can see more from Jenny in the future and I hope we see more and more research coming out in the next few years!! ❤
Wow! thanks for sharing. I’m have horrible insomnia and it even really affects my life. ❤ you are so 💪🏼 😊
I have dreams / nightmares that keep going .
If I get up to go the bathroom. It starts again
Same dream
Over and over
It’s usually me trying to get out of a sinking cruise ship! While trying to find my dog !
My boyfriend wonders why I’m up for the day at 3.
I can’t handle my dreams !!!
When I was younger it was my teeth falling out. The mind is crazy
Such an inspiring story. Thanks for sharing. Hope you never give up on your dreams! It gives me hope.
Jenny, this is so well done. Thank you so much for sharing it with us. I am going to show this to my doctor and I know he is going to absolutely love it and will want to share it. I am going to give this some sincere thought on how I will share this with others. I feel that my employer, my loved ones and everyone needs to see this. I identify with so much of what you describe in the documentary. I am a high producer and I find myself masking many of my symptoms. Yes, some know I have narcolepsy but they have no idea how much it affects me because I spend a lot of time hiding it. It's exhausting. Thank you for bringing attention to this medical issue that affects so many.
Thank you so much for sharing. I was diagnosed with N with Cateplexy at 26 in 2001. This is the closest to what I experience on the daily. Hug your mama. I have the best parents in the world, and they did not see it either.
My 74 year old mom has suffered from vivid dreaming every night likely brought on by PTSD. They tried every kind of medication and nothing worked. The ONLY thing that ever worked were THC (not CBD) edibles. Her dreaming turned into faint memories which she could not recollect once awakened.
This helps me a lot with my insomnia. Luckily I live in Oregon and I can buy thc in all forms in town.
I was never diagnosed but I can relate. I never thought my issues could be narcolepsy because of the way movies portrayed it as a joke, but recently I looked into it and it sounds like I have a mild version. I’ve found some tricks to cope and I’m able to get by okay. The hallucinations were common when I was in school, I was even sleep walking a couple of times... but I rarely have them anymore.
Thank you for so clearly explaining the effects of this disease, which I also have. Most everything you said is what I've also experienced. This is the first time that I've heard someone say so many of the same things that I've been going through. BTW: I've found it very reassuring to have a dog with me when I've dealt with sleep hallucinations - the dog will respond to and thus help me differentiate an actual threat. I'm pretty certain there will be no actual cure, however, since this type of narcolepsy is caused by an autoimmune response in the body (as I understand it).
Thank you!
My hallucinations as im falling asleep are for some reason hearing people singing happy birthday with a baby crying in the background. I also see the shadowy man figure, which I kinda get. But what is with the birthday scenario, do I have some sort of unresolved trauma around birthdays?! 😅
Whoa…
You're so brave to let others see what you're going through! I learned a lot watching this. I have difficulty sleepng to but it's because of nerve pain from a suicide attempt over 30 years ago. I've had my walls built up for all those years. No one gets in, I don't allow anyone to get close. It's a very lonely way to live but you're young and have your whole life ahead of you and I think you'll be successful in whatever you choose for your future. ❤
Vitamin D3 will help.... A LOT... A deficiency in vitamin D is connected to Narcolepsy.
@@Xatrene this really does help !!
I have narcolepsy. I take a lot of vitamin D. I believe it helps too.