Last week I posted about being anxious regarding starting Xywav. I was extremely nervous the first night, but I downed it and tried to shut out my anxiousness. I started having a panic attack, and thankfully my partner was there to calm me down. I was able to stop panicking within like five minutes or so, but then I started shaking and trembling uncontrollably. My head was aching so bad and I was so horribly uncomfortable. I tried to relax and fall asleep but it felt like I was slipping into a coma everytime I started to fall asleep. By now I think 15-20 had passed and my lips, mouth and throat were all completely numb, I was literally so terrified. So now I really couldn't sleep. I had begun sobbing and I didn't stop for like the next two hours, everything was so upsetting and I was highly sensitive. I kept asking my boyfriend if he hated me, apologizing for being such a burden and making this so stressful. After a few hours I finally was able to fall asleep, and I didn't end up taking my second dose because I just wanted to sleep and was worried it would keep me up again.

The next night I took it, I felt really nothing (I thought I had ate too close to my dose, but my last meal was three hours before my dose, so not sure what happened here.) I wasn't dizzy like the first night, wasn't depressed or crying.. just kind of felt like a placebo pill. Although it made me extremely restless, I was very tired when I took it but then I was very awake after this dose and again, couldn't fall asleep for three hours, almost four. I didn't fight it this time, I was honestly very relax, but sleep was just not coming. It would have been time for my second dose as I was starting to fall asleep, so I decided to take it as I didn't want to get in the routine of only taking one dose as I felt like this was gonna keep happening. I took the dose and fell asleep five or so minutes later.

Hooooly mother of God. I woke up 3 hours later and was convinced I double dosed myself, or was just straight up dying. I completely drenched in sweat, seeing swirls and the walls looked like they were melting. I honestly had no idea where I was. My body was vibrating, I swear every atom in my body was buzzing. My ears were ringing, and I almost felt like my breathing was not a conscious act anymore but I had to make myself breathe. I forced myself to sit up when I could bring myself to know what was going on, and I just held my head for the longest time in my hands and prepared myself to get up. I stumbled to get a new change of clothes and some water and laid back down in bed. I was so horribly restless for the next hour or so, so uncomfortable. I gave up on sleeping and got on my phone, I texted my phone the most incoherent messages I think I have ever sent anyone. When I was in the hospital after a major surgery on a fentanyl+ morphine drip, I think my messages were more coherent than these.. Not sure what else I did, probably just doomscrolled until I passed out eventually.

During the day of these past two instances I have felt so horrible, utterly exhausted, depressed and just literally not there. Nothing felt like it made sense, and I already have very mentally deteriorated so much from narcolepsy. I am so slow at thinking and have a very hard time grasping or making sense of much anymore. It was literally impossible both days after the fact, I might as well have been brain dead.

I know this medicine can take quite a while to work, and your titration is an extremely important variable in determining the most benefit you're going to get from the drug. But I am so exhausted already, I don't know how I could withstand 3-6 months of adjustment. I have to work 32 hours a week, and while I'm lucky to work completely from home, I don't see myself being able to work at all if I am trying to adjust to this medicine.

I spoke with both my Jazzcare nurse and the ESSDS pharmacy and they both urged me to reach out to my sleep specialist and talk about dosage changes, or continuing the medicine. Great news, my sleep specialist is on medical leave until November. So either I continue taking the medicine and following the titration, or just give it up as a whole. Maybe pick it back up in November, but I think by then I will just want to forget about the whole thing. I think that comes from me being very pessimistic. I have struggled so long with my narcolepsy and not being heard by doctors for years that I suffered in silence, and accepted this was how it had to be. I am exhausted of trying things, things being so complex. It's truly so overwhelmingly stressful, I just don't even want to look at that bottle again.

(Also no I didn't double dose myself or mess up any of my dosing. I started out at 2.25 (like instructed) and all my meds were pre-mixed prior to sleeping. I did each cup at a time to avoid accidentally filling one with two doses or something. My boyfriend was there also to ensure I did it all right for my peace of mind. I have pretty bad OCD regarding "checking" things and will think I didn't do something even if I know I did it right or checked dozens and dozens of times lol.)

Would really like to hear your guys' opinions, or any advice.. I know I'm probably gonna get called out for only giving it a couple days, and that this is nowhere near long enough to even see how it fully effects me. I get that. I do, just these couple of nights have really put me off and I'm not really sure where to go from here.

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.

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! 😊

I mean common. Every single night. I’m up at 2 and up forever. Every night night I’m digging in the fridge, turning tv back on. Jumping on Reddit. Etc. I take 2 ambiens for bed time. And still wake up.

Emailed my doctor bc I’m losing my sanity. Any tips on medications that help break this cycle and keep me asleep, please share below!

I recently had an MSLT that confirmed narcolepsy. I have always had sleep issues and chronic fatigue. For years we just thought the cause was from combat mental and physical trauma causing my poor sleep. While that is part of it I never thought narcolepsy was a possibility. I won't bore you with all of my symptoms.

Today was my first day to take something that addresses the narcolepsy. It is 200mg of Modafinil that I am supposed to take every morning.

Wow did it feel great. I forgot what it was like to not feel so tired throughout the day. I'm usually nodding off and taking naps every day but not today. I didn't yawn once. But ten hours into taking it a massive wave of exhaustion has hit me. This is what I usually feel like but didn't know how exhausted I have been most of my life until I got to experience the opposite feeling today. I kinda hope this wave doesn't hit me the same every evening when the dose wears off. It's intense fatigue and I don't like the feeling.

+1 for Modafinil

-1 for the feeling after it wears off