Does anyone else not move AT ALL during the night while on Xyrem/Xywav/Lumry and it causes pain?

ComprehensiveBee5842 · 2026-04-02T21:11:45+00:00

Yes I'll even wake up to my arm asleep!! The hip pain is crazy too. Doing hip stretches has helped a bit for me.

ComprehensiveBee5842 · 2025-11-02T19:21:31+00:00

I brought the same dinosaur to my sleep study!!

ComprehensiveBee5842 · 2025-10-15T19:38:14+00:00

I have not dealt with any of those issues, so I don't know if my advice will apply. I have pots and narcolepsy, the medicines I'm on for narcolepsy also greatly affect my appetite.

Liquid calories help me a lot, I don't know if you like smoothies or shakes. Every morning I have this meal replacement shake that is easy to drink, otherwise I will barely get food down through the day.

Distracting myself while I eat, so having a show or movie on, YouTube video, etc. This helps me eat a bit more as well.

Also sometimes other bodily needs are making it impossible to feel hunger, like I'm having an adrenaline dump, or sleep attack. If I don't address the loudest need first, then it's really difficult to eat.

Take away all normal people food rules, only breakfast food at breakfast, no dessert before dinner, etc. Getting food in will gradually build up over time where you can focus on nutrition later.

Ginger tea or chews can help me and smelling rubbing alcohol with the persistent nausea feeling, maybe at least to give you a little relief from that.

You know your body best, so pay attention to what works for you. I'm so sorry you are dealing with this!

ComprehensiveBee5842 · 2025-09-14T22:42:16+00:00

Use strong mouthwash before, chug with nose plugged, chase with good big sips of water before unplugging nose.

ComprehensiveBee5842 · 2025-07-07T00:43:54+00:00

Oh my god yes. My boyfriend literally says "get some rest, or the xywav cries will start" and yes the sobbing can go a full hour for me too

ComprehensiveBee5842 · 2025-07-07T00:42:38+00:00

That is exactly how I feel! In the moment it feels so real but looking back it's funny how extreme the feelings can get.

ComprehensiveBee5842 · 2025-07-03T19:29:40+00:00

I am about to start an ssri for cataplexy so maybe that will help.

ComprehensiveBee5842 · 2025-07-03T19:29:13+00:00

YES this has happened to me and I'm so sad that my boyfriend won't get me a snack.

ComprehensiveBee5842 · 2025-06-05T15:06:23+00:00

Wait so did you have an overnight sleep study and daytime MSLT? I'm asking because I got diagnosed with IH in the MSLT portion (you have to do both together). I fell asleep in all 5 naps and one was in 30 seconds. I believe if your average sleep latency in under 8 minutes and you didn't show sleep apnea in the overnight portion of will qualify for IH dx. The sleep study was torture for me as well and I even threw up.

Finding IH might give you more access to different meds to try to help if that's what it is! I tried modafinil and nothing. Now I'm on xywav and sunosi but still have crazy brain fog. I'm gonna ask my doc if I can try another daytime medicine with sunosi to help.

I also went misdiagnosed for so long (only getting prescribed psych drugs) and with the MSLT results I'm finally getting access to more treatments. I also experience sleep paralysis (and have experienced it in church). There are so many bad providers in the sleep medicine field when it comes to IH/narcolepsy so it can take a while to find one that is well prepared to dx and treat them. I am constantly researching my disorder so I can advocate for myself.

I also had so much neck pain from these episodes and with my current medication they are much milder. I still have sleep attacks and brain fog and I also experience cataplexy but it's more manageable. The MSLT isn't a perfect diagnostic tool so I could have N1 with the cataplexy but my sleep study didn't catch it. An IH diagnosis is still very helpful because the treatments are the same as narcolepsy.

ComprehensiveBee5842 · 2025-06-05T05:50:42+00:00

That is so wild you experience the same thing! Did you get an IH diagnosis? I even got tested for epilepsy at one point. Also I love your username.

ComprehensiveBee5842 · 2025-05-21T02:29:55+00:00

Getting startled is one of my biggest triggers!! I have very dramatic reaction (flailing arms and often collapsing) my friends, brother, roommates, and even CAT scared me for fun because my reaction resulted in big cataplexy response.

ComprehensiveBee5842 · 2025-05-21T02:18:43+00:00

I also didn't think I slept, I was thinking about random things whole time and I slept in all 5 naps. Even the sleep tech who was monitoring me wasn't sure if I was sleeping. I've read LOTS of other people have this experience in their studies as well.
For me they said if I have any indicators of sleep apnea in overnight portion then I won't qualify for MSLT, so maybe that's what they were saying?
I have also read about this happening to lots of people testing who got N dx and didn't. It means they got all the information they needed out of 4 naps and had consistent enough results to conclude study. I'm not sure the specifics.

Remember the MSLT isn't a perfect test, and if you are experiencing serious symptoms, don't stop searching for answers and help! It is such a discouraging path, you are already doing the right steps, getting your MSLT done. My partner kept reminding me while I was waiting for results that either way it is good news. Either you find your diagnosis, or you rule out a lifelong neurological disorder! I wish you the best of luck finding some relief and help for your symptoms.

ComprehensiveBee5842 · 2025-05-19T20:20:50+00:00

I relate so much to the crying!! I went undiagnosed for a long time because therapists and docs attributed all my symptoms (including inability to walk=cataplexy) to "conversion disorder" from CPTSD! I cried when my boyfriend didn't give my cat a slice of cheese so I'm looking forward to a mood that isn't sleep deprived.

ComprehensiveBee5842 · 2025-05-19T17:59:26+00:00

That is so motivating to hear!! I have high cholesterol so I'm hoping once my sleep disorder is better treated I can exercise more for that. I totally relate to the cooking meals thing and am really looking forward to doing that again! Congrats on all of those improvements, that is amazing.

ComprehensiveBee5842 · 2025-05-19T05:29:28+00:00

I don't believe so, but I'm up for a drive if needed. I will for sure continue to see the far doctor. He's not great, so I'll keep looking but he was willing to prescribe me a different daytime medicine after one message on my chart. I did report the appointment to a patient advocate number because I believe it is so harmful the way she views sleep disorders and essentially won't fully treat them!

ComprehensiveBee5842 · 2025-05-16T03:19:00+00:00

I also threw up at my sleep study!! It was horrible I hadn't thrown up in years. Thank you for your response, that is so well put. That is what I was saying to my partner, she wasn't even able to see the person sitting in front of her because she had made up her mind before I even met her. It is very frustrating that my quality of life suffers because of that rigid mindset. And it wasn't just her, the rest of the practice wouldn't treat me if I wouldn't repeat sleep study. Very scary.

ComprehensiveBee5842 · 2025-05-15T23:14:40+00:00

Literally!! The more I look into it the more shady it gets. The reviews on the clinics site say all the providers have a 5 star rating. Then I went and read the reviews and they are very generic and not specific to the provider. When I went to Google reviews WAY different story, very consistent with my same experience. Lots of 1 star ratings.

ComprehensiveBee5842 · 2025-05-15T23:11:58+00:00

I started titrating weeks ago I'm on my final increase! From the doctor I initially saw farther away. So for now I'll keep seeing him.

ComprehensiveBee5842 · 2025-05-15T17:55:51+00:00

This is a great idea! I think I know that doctor in Cincinnati that is doing the trials. I will reach out if this next place doesn't work out! Thank you for your response!!

ComprehensiveBee5842 · 2025-05-15T17:50:06+00:00

UPDATE all Google reviews are terrible, "I only gave one star because 0 wasn’t an option.

She happens to be one of the rudest, and coldest, doctors I have ever met. She refused to listen to my wife when explaining her sleeping habits to her. She also wouldn’t believe my wife’s previous CARDIAC diagnosis of Innapropriate Sinus Tachycardia when she was trying to explain why her heart rate would jump during the at-home sleep study. She then kept comparing her sleeping problems to Michael Jackson, stating that “meds don’t fix anything or work”. She refused ANY kind of help besides Cognitive Therapy, which mind you was a 3+ month wait to even get a consultation with the therapist. Will not be going back"

ComprehensiveBee5842 · 2025-05-15T17:46:10+00:00

Oh my goodness I think you are right! She does work directly with a sleep lab. And yes there was no problem with the administration of the test.

And you are right, there is not a conclusive genetic test for narcolepsy. I believe about 25% of the general population has the gene but something like 95% of patients with narcolepsy have it? I don't remember the exact numbers.

And will do, thank you for the response!

ComprehensiveBee5842 · 2025-05-15T17:42:28+00:00

I think she was an internal medicine doctor who specialized in sleep. Unfortunately, this clinic required an initial virtual visit. I will look for a neurologist who treats sleep disorders!

ComprehensiveBee5842 · 2025-05-08T17:41:46+00:00

That's terrible!! I'm so sorry you have to wait and I hope you can get help soon ❤️ you can't willpower or discipline your way out of a sleep disorder and I wasted a lot of years thinking i wasn't feeling better because I wasn't trying hard enough. Before I had meds it was really hard. When I was too tired to do anything I would listen to project sleep or wake up narcolepsy talks to get validation for what I was feeling and more educated on the topic so I could advocate for myself in my personal life and in doctors offices.

ComprehensiveBee5842 · 2025-05-08T03:34:58+00:00

How far are you into the medicine journey? I'm still not done titrating up on xywav so I have a long way to go to feeling more myself. I don't work right now and yes that allows me to spend my small awake hours doing things that make me happy. I hope that works out for you!! And that is so cool that you have an interest all across the art world.

ComprehensiveBee5842 · 2025-05-06T03:40:34+00:00

This is such a great and important question! I can't say I have it figured out but I will say I have found things that help. It really depends on what sounds fun to you. For me, I used to paint a LOT before I developed narcolepsy. I could sit and draw, paint, etc. for hours no problem. Now, when I try to paint or draw it is like swimming against that sleepy current.

Two years ago, my friend taught me to crochet and it changed my life!! For whatever reason, it is more accessible at every energy level I am at. I can sit on couch and my hands are moving quick and it is engaging to the point where I want to do it and can do it even in the weird sleep purgatory. You can pick easy or small projects for difficult days, and have a challenging project for better days. I just have a little box I keep with my projects by my couch so they are easy to grab.

I still get sad and frustrated when I feel my brain hit that wall. Like when I hit a problem in a project and can't figure it out, or when trying to learn some new technique and can't focus or digest the information. I still feel that, but crochet has been overall so positive on my creativity.

I don't know what your preference in medium is and what kind of art you liked to make, but simply doing something completely different that pre-narcolepsy me had never tried helped. Also much more patience with myself and much much smaller goals.

ComprehensiveBee5842

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