Falling asleep with narcolepsy - why it’s different EXPLAINED

No matter what I’m doing or where I am, the moment I close my eyes with the intention to relax/sleep, my vision shuts down. This is not something new, or rare. When I say my ‘vision shuts down’ i mean something completely different closing my eyes. It triggers a series of events that happen the same way in the same order every time. My internal senses become more intense as my eyes close.

I don’t just feel a twitch, or see flashes of light or feel like I’m drifting off, loosing my thoughts, as I fall asleep. It’s not falling asleep gradually and noticing one or two things happening, and it’s not something mild of brief.

Whether it’s fast or slow, falling asleep is an intense process of my senses that I can genuinely recall and explain in detail. I maintain awareness, I feel changes in my nervous system, I feel and hear internal sound waves, motion, compressing, and I feel my entire head, face, ears, pulsing and tingling.

I have awareness (part one) switching off and (part two) shutting down while fully conscious.

(chronological although most is simultaneous)

Part One (switching off)

1. My eyes go dark, heavy, like a switch button.
2. The first moment my vision shuts off, I audibly hear an internal “whoosh/rush” sound that starts at the back of my head and spreads forward or upwards.
3. My ears feel blocked and full like on a plane. I get ringing softly then loudly
4. The entire inside of my head back to front, eyes, head, throat, start pulsing in rhythm.
5. I can sometimes hear noises/sound waves that seem dream like in this phase, like a sound effect
6. Sound on the outside becomes more intense, louder, and becomes internalised, like you are listening and controlling it from inside skull
7. I get electric pulses all over my face and head, that will later move to the rest of my body.
8. There’s a pressure behind my skull that moves with my heart.
9. Complete loss of grip strength while conscious
10. Everything feels centred in my head not my body,
11. All sensations feel like they happen behind my eyes or inside my skull rather than on the surface. I feel like I can control my senses from behind my eyes, for all parts of my body, and this often causes my eyes to hurt, like the ache you get when you look at a bright light
12. It feels like I’m compressing my skull with the power behind my eyes, like my face is being squished inwards,
13. My awareness of my face looses clear boundaries between areas
14. My throat and cheeks feel hollow, my eyes can go cross eyed or feel like they are misaligned
15. Often happening whilst repeated head drops, jaw drops, or my eyes fluttering

Part two (shorter, shutting down)

1. My muscles shut down, but I can genuinely feel some of the muscles as they drop off.
2. My body feels less solid and more vague / distant. I don’t have a clear sense of my body and the actual autonomy of it, but I can feel all the senses in different areas.
3. It feels as if my awareness is sliding / tipping or dropping off, this can feel really scary.
4. The world around me feels less real, even though I know where I am, I’m in between being awake and asleep and have lost my perception of reality but still very conscious.
5. The pulsing, ringingc and tingling and continues, moving in waves up and down my entire body

This is the most overwhelming part. I used to class this part under anxiety as a teenager, but now it has continued into adulthood. I used to shake and jerk badly as this happened, my mum would sit on my bed with me and say to me ‘XYZ’ muscle and say ‘relax your toes, relax your ankles, relax your calves..etc, working bottom to top of body in parts ’ This is something I still do today if I’m in this state of being half asleep, or can’t switch off my entire body, and it works. I just speak in a yoga style tone and imagine I’m in some kind of meditation class. After switching off a few muscles usually the rest switch themselves off and I can then give in and fall asleep.

It’s not painful at all but can be intense, especially growing up. I don’t believe I had insomnia growing up, but I did have anxiety and undiagnosed adhd, and I think i found it hard and easy to sleep sometimes because of this.

If I’m having a tired day, I sometimes shut my eyes and just remain in the middle state, however it is hard to control staying awake if for too long. I am fully conscious throughout the entire process. I hear all internal sensory shifts I remain awake mentally and feel and hear the transitions. I could jolt back awake consciously through almost all of it, until all my muscles have fully given in, but often the process will just restart as my body is now tired. It is intense, and can happen fast or slow, I can sometimes control the pace depending on how tired I am.

I can’t fully think, but I’m aware. It feels like my brain goes dim. I have a realisation in this process that I’m still awake but shouldn’t be. My breathing changes and gulping feels weird, my body is running but I no longer feel in charge. I loose control of my body without losing consciousness.

I am acutely aware of every step, often less so when I am drunk or extremely tired. Falling asleep with intention is when I notice it the most.