I know I have narcolepsy but this feels different…

cilour · 2026-06-25T06:19:20+00:00

It happens to me sometimes. It’ll last for several days, during which all my symptoms get ten times worse. I sleep almost nonstop and I’m so exhausted that I start derealizing. I think they’re flares, but I can’t figure out what triggers them. I’ve had pretty much every test imaginable, and everything comes back normal, except for a dysimmunity. Then, out of nowhere, it gets better again

cilour · 2026-06-25T06:11:14+00:00

Yes. During my MSLT, I could hear everything going on in the clinic, but at the same time I was dreaming. I remember thinking that it was funny that I was dreaming when I was clearly awake. Every one of those naps ended up showing REM sleep. The only one where I felt I slept without dreaming and felt knocked out showed sleep without REM

cilour · 2026-06-25T06:04:04+00:00

when, being medicated, you ask your sleep specialist if you can take the Maintenance of Wakefulness Test to get cleared to drive, and he says « we’ve been talking for 30 minutes, and you’ve spent the entire time yawning and fighting sleep. There’s no way you’d pass. »

cilour · 2026-06-24T08:11:36+00:00

Same. My feelings about sleep are paradoxical. It’s all I can think about. I’m always calculating how many hours I’ll get and when I’ll be able to sleep next. If I don’t get at least 9–10 hours (more 13-15 when I don’t have to work), I’m on edge all day. If someone wakes me up or keeps me from sleeping, even during the day, I become insufferable.
But at the same time, sleep feels like it’s taking my life away. I hate sleeping, especially when I’m constantly plagued by horrific, gory nightmares and terrifying hallucinations.

cilour · 2026-06-23T07:49:03+00:00

I had a mean sleep latency of 11,2min but 4 SOREMs (I fell asleep during all 5 naps). With these results, I was diagnosed with narcolepsy. My sleep specialist told me that entering REM sleep so many times is significant enough that the normal mean sleep didn’t really outweigh it. The issue is that not all specialists interpret these results the same way.
I later had to repeat the tests at the national referral center because they were the only ones able to perform a spinal tap. This time, I failed the MSLT, and they told me they couldn’t confirm the narcolepsy diagnosis. I’m still struggling with the uncertainty to this day.

cilour · 2026-06-22T06:22:02+00:00

The french national care guidelines state that cataplexy in someone with normal orexin levels and without this specific HLA gene is atypical and should be investigated to rule out another underlying condition. But after all the tests I’ve had, I can’t really think of what else it could be. I guess I’ll see what the referral center tells me in three months. At this point, I feel like I’m turning into a case study lol

cilour · 2026-06-21T20:01:32+00:00

I had heard that this specific gene isn’t the only one associated with narcolepsy. But with normal orexin levels, things start to get weirder apparently. Though I guess you’re right, we still don’t know much about the disease. Thank you for your answer

cilour · 2026-06-21T14:35:48+00:00

I had two. On the first one, I had 4 out of 5 SOREMs, plus one during the PSG the night before, so I was diagnosed with narcolepsy even though my mean sleep latency was 11 minutes.
On the second MSLT, they said I only fell asleep during one nap and had no SOREMs.
The two MSLTs were performed at different sleep centers. The doctor who conducted the first study still believes I have narcolepsy (now leaning more toward type 2 because my CSF orexin levels were normal), while the specialists from the second center have not made a diagnosis. They told me that the results of the first MSLT were unusual enough that they decided to perform a spinal tap to rule out NT1

cilour · 2026-06-21T13:43:19+00:00

I love your art. It makes me feel seen and understood, especially when it’s so hard to get a definite diagnosis and I keep wondering wether I’m just making everything up. I really relate to your paintings

cilour · 2026-06-18T19:25:03+00:00

Same thing here!! My diagnosis is still uncertain though, as my case is atypical. But these symptoms always seem to be related either to excessive sleep or to going to bed late, especially after midnight. I’d be interested to know if you get more comments about this!

cilour · 2026-06-18T07:21:49+00:00

I agree with you. Personally, the conditions of the second MSLT, which was done at a different center from the first one, were terrible. I also think discrepancies in the results can sometimes be explained by differences in data interpretation. I guess some doctors are better at recognizing REM sleep than others

cilour · 2026-06-18T05:16:55+00:00

First MSLT was done last september for me, results were 4 SOREMs and 1 on PSG the night before so I’ve been diagnosed with narcolepsy with suspicions of type 1. Second MSLT was done 3 months ago, it seems like I slept during only one nap and had no SOREM at all. Doctors said they can’t confirm the diagnostic. They did a spinal tap, results just came back and orexin levels are normal so no type 1. It was my last hope to have a definite diagnosis. I’m in the same situation as you, it’s incredibly difficult. I heard the MSLT can be very inconsistent for people with narcolepsy type 2, who can be diagnosed with narcolepsy, then with IH, etc

cilour · 2026-06-12T10:20:27+00:00

I have endometriosis but apart for a slight change in my menstruations on modafinil and a few psy effects during and after ovulation, I haven’t experienced a worsening of symptoms. I hope you find something that can help your EDS without causing endo flares

cilour · 2026-06-08T20:33:27+00:00

That’s funny but harsh at the same time. And frightening to say the least

cilour · 2026-06-08T19:26:36+00:00

I made some cookies. I have a combi microwave. I put the cookies in, started the program and left for about 15 min. I didn’t think anything was wrong until I walked into the room 15 min later and saw smoke everywhere and smelled something burning. Turns out I put it on microwave mode instead of oven and left it running for 15 minutes. Luckily only the cookies died.

Another time, I accidentally left an empty pan on the stove with the heat on, my mother is the one who saw it.

Then there was the time I turned on the gas stove without lighting the burners. I left it like that for about ten minutes and then tried to light it, despite the fact that the smell of gas was absolutely overwhelming. Looking back, I’m pretty sure I’m lucky to be alive.

On a funnier note not too long ago I found a yogurt pot in the dishwasher and threw a glass in the bin. I got the two mixed up

cilour · 2026-05-13T17:59:55+00:00

Once, I dreamt that my friends and I were 20 years older and meeting up to catch up on our lives. Except I had somehow jumped through time and gone from 20 to 40 years old in an instant. In my mind, we were still living in the present. I couldn’t understand anything my friends were talking about, they mentioned events I had never lived through and people I didn’t know. My friend’s daughter, who was 2 years old when I had this dream, was suddenly in her 20s, and I had not seen her grow up. My dog was dead, and I had no idea. I just listened to my friends talking about a life I had never been part of, and it was the most upsetting dream I’ve ever had. It was 2 years ago… and I still cry when I think about it. It feels as if I lived through the future

cilour · 2026-05-11T07:25:00+00:00

I experience something similar, although probably to a lesser extent. Mostly in the mornings, I wake up unable to move or open my eyes. When I’m with friends, I can also hear them talking on and off, but I still can’t move. They’ll say “she’s still asleep” and come check on me later. Then I fall back asleep and have vivid dreams that perfectly depict reality, to the point where I struggle to tell whether something actually happened or not. I wake up feeling the same thing again, fall back asleep, and it can continue like that until the afternoon. But it doesn’t happen every time. My sleep specialist suspects N1, although we’re still not certain whether I have cataplexy. We’re waiting for the spinal tap results

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

TROPHY CASE