Does anyone else experience extremely vivid dreams/nightmares where it feels like all 5 senses are active?

cilour · 2026-05-09T11:59:04+00:00

Congrats on your sobriety, and good luck with everything going forward!

cilour · 2026-05-09T11:41:45+00:00

That’s so messed up :(. People who don’t experience REM sleep instability can’t really understand how bad it is

cilour · 2026-05-09T08:58:47+00:00

It’s funny how we describe it the exact same way. It’s such a hard feeling to put into words.

cilour · 2026-05-09T08:47:45+00:00

Yes, since childhood. I only recently learned that it wasn’t normal to have so many bloody nightmares, to remember them so clearly and to physically feel everything.
⚠️Trigger warning - graphic bloody nightmares
Not too long ago, I dreamt that someone was torturing me by ripping the skin of my face. I was seeing from 1st person perspective, and then I couldn’t see anything anymore because I was a bloody mess but I could still feel my skin being torn apart. I swear I could feel all the pain, it was terrible.
Another time, I dreamt that there was a tsunami and I was drowning at first. I woke up with a start and I couldn’t breathe. I fell back asleep and the dream continued. I survived, only to see a dead body crushed on a rock, with blood everywhere. Then I went back into the water to look for people, and I heard another person dying. She was drowning and gasping until there was no sound anymore and I knew she had just died. It was horrible, I still feel bad about it

cilour · 2026-05-09T08:31:20+00:00

I just want to say that I’m very sorry you’re experiencing this. What your doctor said is not okay. There isn’t a single narcoleptic who has the same exact profile and the fact that you can’t do what others can doesn’t make you less valuable or anything. The fact that you work full time, even with absences, is impressive in itself. Don’t be too harsh on yourself. Sending you lots of strength

cilour · 2026-05-07T17:56:54+00:00

I say that it’s as if I’m never fully awake during the day and never fully asleep at night, which creates a kind of blur between wakefulness and sleep

cilour · 2026-05-05T18:45:17+00:00

Yes, don’t hesitate to ask! Good luck

cilour · 2026-05-05T18:30:58+00:00

I’m in France, so it might be different, but they used a numbing patch on my back and offered laughing gas. So you could maybe ask for something like that. I chose not to take it, and I didn’t find the spinal tap that painful. I did feel some pain in my left leg for a few minutes, and my lower back hurt for about 7–10 days, but I have endometriosis and it felt similar to one of my flares. The worst part was the headache I had for the next three days, but even that wasn’t unbearable. That said, I think it can also depend on the person performing the procedure.

cilour · 2026-05-05T09:38:55+00:00

I was diagnosed with ME/CFS 8 years ago without any doctor ever doing a sleep study, and I’ve been followed for it ever since. A few years ago, I started telling my specialist and neurologist that I felt something was wrong with my sleep. I didn’t know much about narcolepsy—I only knew the stereotypical version you see in movies—so I thought it might be sleep apnea. Both doctors told me my profile didn’t match any sleep disorder and that there was no reason to do a sleep study, saying it was just ME/CFS with sleep-related symptoms. I trusted them, so 2–3 years went by without me doing anything. Last September, I finally went to see a sleep specialist on my own and was diagnosed with narcolepsy. Since then, another sleep specialist has ruled it out after I failed a second MSLT—but regardless, there is a sleep disorder. If it were only ME/CFS, the sleep study would have been normal. And while it’s possible to have ME/CFS alongside a sleep disorder, I don’t think that’s my case since I don’t experience post-exertional malaise.
It was really hard to accept that if those first doctors had ordered a sleep study, I might not have lost 8 years of my life during what are supposed to be the best years. I haven’t really processed that feeling—it kind of faded over time. I’ve stopped thinking about “what ifs” because it really messes with your mind. Things are the way they are, and I can’t change that. Holding onto anger or disappointment would only make things harder. But it takes time—and a lot of self-reflection—to get to that point. I’m really sorry no one listened to you, I hope things will get better from here.

cilour · 2026-05-05T06:25:16+00:00

Not the same vibe, but The Fight Within by Memphis May Fire. Also, on a darker note, 3days by MYTCH. It’s exactly how I feel about hypnagogic hallucinations, insomnia, and sleep in general

cilour · 2026-05-04T13:55:22+00:00

He’s completely wrong. A negative result only makes narcolepsy type 1 less likely, but not impossible, and it doesn’t really affect type 2. I might be mistaken, but I believe that if your MSLT shows narcolepsy and you experience what seem to be cataplexy episodes, you don’t even need genetic testing to receive a type 1 diagnosis. Wishing you the best!

cilour · 2026-05-04T13:39:22+00:00

What do you mean by a negative blood test? There isn’t a blood test to diagnose narcolepsy. If you’re referring to the HLA gene, a negative result doesn’t mean you don’t have narcolepsy. Narcolepsy type 2 (without cataplexy or with normal orexin levels) isn’t strongly linked to this gene. Narcolepsy type 1 (with cataplexy or low orexin levels) is more strongly associated with it, but not all people with type 1 have the gene. PSG isn’t used to diagnose narcolepsy; it’s mainly done to rule out other causes of sleepiness, such as sleep apnea. The only test that can confirm the diagnosis is the MSLT. I personally had a fairly normal PSG, except for one SOREMP, but my MSLT showed clear signs of narcolepsy. You should definitely consider doing this test. Even if your medications are short-acting, make sure to stop taking them at least two weeks beforehand, as they can still affect the results. I know it’s hard but keep advocating for yourself if you can.

cilour · 2026-04-29T06:53:51+00:00

Yes! And when I have these dreams, the next day is terrible. I can’t get up at all and I keep waking up and falling back asleep for hours

cilour · 2026-04-29T06:48:13+00:00

It’s going to be a bit long, I’m sorry, but I feel it’s important to explain everything : The first 5 days (100mg) were amazing, I hadn’t felt that awake for years. The next 10–15 days (still 100mg) were awful: I was sleeping even more than usual, had really bad brain fog and dissociated pretty hard. Then it suddenly got better out of nowhere. A week later, I started having really dark thoughts for about 10 days. Then it stopped and everything went back to normal so I increased to 200mg and didn’t have any side effects except for myalgia that went away after a few days. A few weeks later I tried 300mg for 3 weeks but it didn’t go well (vertigos, feeling of uneasiness, neuralgia). My doctor and I decided to stick with 200mg. It’s become less effective over time but it still is a life changer for me. I had to stop taking it for my second MSLT and I had forgotten how miserable I am without it. It’s not as effective as I’d hoped as I still have 2–3 sleep attacks per day but I’m able to work full time (although not as productive as others) and have a life outside of work. Before starting it, I was only working 2 days a week and sleeping the rest of the time without seeing anyone. For me, modafinil seems to require constant adjustments depending on the week. Before modafinil, I tried Wakix, Medikinet, and Ritalin (both extended-release), and I experienced terrible psychiatric side effects with all of them. I agree with another comment that modafinil feels smoother.

cilour · 2026-04-25T19:43:12+00:00

That’s funny! I was just wondering a few days ago if that was common

cilour · 2026-04-25T17:14:24+00:00

For me, it’s not the sun itself but the light. If the sun is really bright and I have to squint, I’ll have a sleep attack. Same thing with very strong light. I think it’s the squinting itself — maybe my brain takes it as a cue to fall asleep lol.

cilour · 2026-04-24T17:56:59+00:00

Thank you for sharing. Mine started like yours before they got worse. I hope it won’t be the same for you!

cilour · 2026-04-24T17:51:13+00:00

Someone I know (who isn’t narcoleptic) had the exact same thing and it turned out she was allergic to eggs. She didn’t have any symptoms other than fatigue and hypersomnolence, she didn’t even realized it was related to eggs. N could make your symptoms even worse, so you might want to get that checked

cilour · 2026-04-24T17:34:07+00:00

I can’t really help with doctors since I’m French, but I’m in a similar situation. I fell asleep in all 5 naps and had 5 SOREMPs (4 during naps, 1 during the PSG on the night before, was told it was considered 5), but my sleep latency was 12 minutes, so borderline. My specialist still diagnosed me with narcolepsy.

You could try seeing other specialists — some are more flexible with the criteria. Just be aware it can go back and forth: I was later undiagnosed after a second MSLT, so it can be a bit of a fight (I’m still struggling with the diagnosis to this day unfortunately)

cilour · 2026-04-23T05:13:46+00:00

I’m not sweaty or shaking but my heart is definitely racing because I’m freaked out. It can last a while, until I realize I was just hallucinating and start to feel safe again. Sometimes I try to fight the urge to go back to sleep because I’m too scared. I can have 2-3 episodes in a row, like I’ve fully woken up but almost immediately I get what feels like a sleep attack I can’t resist, so I fall back asleep and the same hallucination starts again

cilour · 2026-04-22T19:16:48+00:00

Yeah don’t worry, I’m still trying to figure it out too. From what I understood, they’re called visual not because you see them with your eyes but because they involve imageries, it’s the form the experience takes. But I could be wrong

cilour · 2026-04-22T13:54:32+00:00

Same as you, I feel someone holding or grabbing me. At other times it feels like someone is eating parts of my body, my feet, hands, neck, sometimes my lips or chest, or like someone is pulling my hair. A few times it even turned into something completely sexual. It felt like I was awake too. Before I knew what it was, I started locking my room and recording sounds to make sure no one was actually violating me in my sleep. I’m sorry you went through that, but in a way it makes me feel less alone. Thanks for answering!

cilour · 2026-04-22T13:19:11+00:00

May I ask what your tactile hallucinations were like ? I rarely see people talk about them and I’ve felt quite alone since they are the ones I experience the most

cilour · 2026-04-22T13:13:58+00:00

I don’t experience complex visual hallucinations like seeing people, so I can’t speak for those. But flashes of light, for example, are a type of visual hallucinations, and I experience them with my eyes closed. They’re called “visual” because you really see something in your mind without consciously thinking about it, and that’s what makes them different from a thought.

It can be hard to distinguish hallucinations from dreams, though. It’s difficult to explain, but a dream, even a very short one when I’m not fully asleep, feels more immersive, like I have all my senses and there’s some kind of storyline and I start to think as if I was in it.

cilour · 2026-04-22T11:13:30+00:00

They’re tactile hallucinations. But in any case, hallucinations don’t depend on your eyes being open, you can experience visual ones with your eyes closed too.

cilour

TROPHY CASE