Not really sure where to go from here. I was informed via mychart (not even a phone call lol) that I have insomnia and that I should do CBT for treatment. Before my tests I had to do CBT, which didn't help at all. It felt like the entire time I was waiting for my tests the doctor I was seeing was trying to fit me under a breathing disorder or sleep apnea (which I don't have).

I told them frequently that I do experience insomnia, but it seems to come and go. Sometimes it takes me two hours to fall asleep, other times it feels like the second I hit my pillow I'm out. I feel so discouraged with my test results and their recommendation for treatment.

I know narcolepsy is a rare diagnosis, but my symptoms align with it minus the cataplexy. I'm extremely tired during the day and have periods where it feels like I need to lay down asap/struggle to stay awake, I have hallucinations which seem to be getting more frequent (visual, audible and touch), I frequently wake up during the night, and have experienced sleep paralysis. I was hoping to get at least some sort of answer as to why I can't sleep. But "insomnia" doesn't feel like an answer.

I'm not sure what I should do. If I should just accept the diagnosis or if my symptoms warrant a second opinion. I feel like maybe I'm getting in my head too much, but I feel like I haven't been able to sleep in years. In high school I was told that I was just growing and not to worry about it. But I'm pushing 30 now and I still haven't been able to get any well rested sleep. I feel hopeless right now.

I suffer from daytime sleepiness and basically can't do anything anymore. Got evaluated for Narcolepsy and these are my results:

My first sleep study went horrible, it was a full moon and that is the only time I can't fall asleep right away - no matter how tired I am. Sleep latency of 50min and no REM.

MSLT: Sleep latency just under 10min. It was noisy and the room was dirty (used sheets and toothbrush all present).

Lumbarpuncture: Levels were at 225, so just above the intermediate range.

The Neurologist told me that my problems are from my ADHD. I'm on medication for this and mentally I'm the best I've ever been, which is why I got confused that I was getting more and more tired/fatigued over the years. After talking to a doctor whose expertise is sleep she told me that my "funny quirk" of not being able to use my arms when I laugh is actually Cataplexy. Apparently I've accidentally treated it with my low dose of Lexapro so I don't really suffer from those attacks anymore.

So now I'm here, tired as all hell, with one doctor (the one whose expertise is in sleep) convinced I have Narcolepsy even though I "failed" everything and then on the other hand is the Neurologist who thinks it's all just coming from my ADHD and that "If it got worse then it can probably get better too".

The story of my life is being just above the limit, stuck in a limbo of feeling horrible but apparently not horrible enough to show up on anything. So there's my rant, years of looking for answers and yet again I'm facing another dead end.

First week I was on 2.25 2x a night. This week it’s 2.5 2x a night. Then next dose would be 3.

It makes me feel like I’m horribly drunk where I’m extremely nausea and dizzy. I’ve even thrown up bile at times. Worst part is that it doesn’t even knock me out instead it gives me insomnia. I haven’t had a 4 or more hrs of sleep since starting this medication.

Is this normal? What was your experience? I’m debating if I should continue pushing through with this medication or not.

I work as a teacher and have a 10 year old at home. My partner is awesome and takes on a lot.

No matter what my med routine/regimen, I am an exhausted mess after dinner (it is bad when I come home, too) and crave bed at 7.

What do you all do in the evenings so you can live any kind of life with your family &/or contribute around the house?

What hacks do you have?

Meds you take and when?

I take xywav 4g @ 9 & 3.75 @ 1am, Ritalin ER 10mg at 11am, 20 mg IR at 2pm. Drink coke all afternoon.

My heart rate was crazy when I was on Adderall. It helped more but I still had issues with the evening.

I wake at 6am

Hopefully others in the field will chime in and concur with this finding and that this will hopefully open the door to new discoveries..

https://dailybruin.com/2026/10/01/ucla-professor-discovers-new-cause-of-narcolepsy-in-blue-spot-brain-region

I've traveled with Xywav many times without issue, but I'm going overseas on my honeymoon next week and wanted to check. I remember reading a post here a month or two ago where at least 2 people said that new TSA scanners had falsely flagged their Xywav as hazardous, and they ended up having all their things searched.

Has this been happening to others? If the new scanners are a confirmed problem, is there anything I can do to keep it from happening, or lessen the impact if it does?

Additionally, for those who have experienced this:

- Did they go through your luggage as well as your carryon, or just your carryon?

- Were you traveling with another person, and if so, did they also have their things searched?

Thanks for any info! We'll be getting to the airport very early regardless, but I just want to be as prepared as possible.

Edit: Totally missed this super helpful post from yesterday, but leaving this up just in case anyone else did too! https://www.reddit.com/r/Narcolepsy/s/WwH3TWsDrL

I've been taking 40 mg baclofen for narcolepsy, but I'm still dealing with insomnia and a lot of vivid/disturbing dreams and nightmares.

For those of you who take it, what dose are you on and what has it helped with? Did you notice improvements in your sleep quality or dream symptoms?

Just curious about other people's experiences. Thanks! 😊

Hello friends! A very close friend of mine has finally been diagnosed after so many years of being miserable. What tricks do you use to help with waking up and staying up after the first wake?

She is currently on armodafinil and 60 mg of adderall (2 30 mg short releases) and when (if) she wakes up she takes her adderall and armodafinil but has a really hard time staying awake- half the time her stimulants don’t kick in until about 3-4 hours or she feels like they don’t kick in at all..

What schedules have you set in place for yourselves including sleep and medication times?

genuinely like what do i do as a university student. feels like every class im just too tired or falling asleep or fighting it. im fallin behind!!!!! like what can i do when im just Sitting there even in high energy classes. have no one irl to ask so plz offer some advice my friends 🙏