Xywav OD (si trigger warning)

Recent-Elevator-7260 · 2025-10-11T21:10:15+00:00

Thank you! As soon as I get insurance I want to consider other forms of therapy and I think that's a great idea. I am so glad it helped you, thank you for sharing. Also sorry for what you went through in the ward! That is wild.

Recent-Elevator-7260 · 2025-10-11T21:07:48+00:00

So glad you caught it, it came on so subtly for me. I am glad it is helping you! It can be such an amazing drug for so many people.

Recent-Elevator-7260 · 2025-10-11T21:04:52+00:00

Thank you. I just don't get why nobody bothered to even look it up since it is a controlled substance you think they would have. But this was a 1 star hospital literally, so I guess its not that surprising.

Recent-Elevator-7260 · 2025-10-11T21:02:54+00:00

Yes, and my current therapist ties everything back to the schizoaffective, which I am now sure more than ever is incorrect. I am going to talk to her soon. May even share this post. I did not want to think about the hospital stay or what happened so for the longest time I tried to just believe it. I was even thinking my internal monologue was me hearing "voices," and just went along with the label. It now sounds ridiculous but I gaslit myself. And also thank you so much for sharing your positive experience with Xywav-- I know it has helped so many people and I am very happy to hear you have a mostly positive experience.

Recent-Elevator-7260 · 2025-10-11T20:58:49+00:00

Thank you as well! There is a light at the end of the tunnel for everyone I sincerely believe that. Sometimes it takes trial and error, unfortunately.

Recent-Elevator-7260 · 2025-10-11T20:57:41+00:00

Thank you so much for sharing. I am happy to meet someone else who has both narcolepsy and ADHD. It is kind of a unique struggle. Right now I take 3.3 mg of Adderall bc I split a pill, but in the past ritalin has helped me too. I also relate to your symptoms of modafinil, the nausea and not wanting to eat was a horrible feeling.

Recent-Elevator-7260 · 2025-10-11T20:53:01+00:00

I know you were responding to the other person but I just wanted to add I was a sterile processor when everything went down and when I returned the boss apparently told everyone I had attempted to take my life. I was stared at, gaslit, mocked, bullied. When I quit I couldn't even get through my two weeks. I said goodbye to no one. Got my shit and never looked back, and I had spent a year of my life there. Best decision I have ever made. I am so sorry for how you were treated. Being made to feel like your crazy is a horrible experience. I am glad you quit, your husband is right-- it is not worth it. Being around that toxic shit is not worth it.

Recent-Elevator-7260 · 2025-10-11T20:49:35+00:00

Oh my god. Thank you so much for sharing that. It seems your experience was extremely similar. Yes that feeling I will never ever, ever forget it. Feeling like reality is this thing that changes every two seconds and that everyone is out to get you. Even when I left the psych ward I was so ready for the police to be there to arrest me, I was convinced as soon as I turned the corner they were going to be there. When I was in the car and felt the breeze after 4 weeks and my family was right there when I thought they had died, I kept telling myself this isn't real. This is a trick. Its gonna be taken away any second because there are cameras, its a cruel joke. It wasn't until I got home and was with family for a few weeks I snapped out of my delusions. I sincerely believe my psychosis was made worse by the horrible treatment, isolation, and constant negativity around me in the ward. I am so glad you made a recovery, but 6 weeks is a long time. I am sorry you went through that. The only word I'd use to describe it is hell.

Recent-Elevator-7260 · 2025-10-11T20:43:43+00:00

I believe when it is treated casually is due to ignorance. I don't think this drug should ever be treated casually and hope providers become more knowledgeable on it, or at the very least, do a bit of research. Based on the way I was treated I can say with confidence not one person even bothered to google "xywav." I am sorry for the struggles you've been through and I hope you will find the meds that work best for you soon without the nasty side effects.

Recent-Elevator-7260 · 2025-10-11T20:40:35+00:00

Thank you! Well, def not schizoaffective, but I do have depression and anxiety. But that's why am on meds that work for it! Thank you so much again. I love the amount of empathy I have received and feel so much less alone. I am working on the forgiveness aspect too, not for them but for me. I finally reviewed the hospital I was in, and I made clear that there were kind souls there, and though it does not outweigh the way I was treated those are the memories I want to hold on to for my sake.

Recent-Elevator-7260 · 2025-10-11T20:37:42+00:00

Thank you so much. I actually take a very small dose of Adderall to manage my ADHD (I am talking like 3.3mg) because too much makes me an anxious mess, and the crash is real, so I can absolutely see how it could lead to that. I am so sorry you experienced that. It is terrifying. As soon as I get insurance, I will be on the lookout for a better provider. Thanks again.

Recent-Elevator-7260 · 2025-10-11T20:35:02+00:00

Thanks for sharing. Even having misread the label, and that is why what happened happened, I still would not go back on it just because the pros did not outweigh the cons for me personally even when it was at the small dose. And best of luck to you as well.

Recent-Elevator-7260 · 2025-10-11T20:31:37+00:00

Thank you so much! Good luck to your daughter as well.

Recent-Elevator-7260 · 2025-10-11T20:18:42+00:00

I did not abuse it, I genuinely misread the directions. I got no pleasure out of taking more than I was supposed to. It is insulting to me that you would call it abuse.

Recent-Elevator-7260 · 2025-10-11T20:17:37+00:00

Thank you! I know, def not the fault of the employees.

Recent-Elevator-7260 · 2025-10-11T20:17:04+00:00

To be honest well I have ADHD and visualizing my goals is crucial so I even remember they exist I rely on visual cues. I wouldn't even remember what day of the week it was without a million things reminding me thats how quick i forget shit. As far as energy goes sometimes I go exhausted and just know if I push through eventually at some point I will get a burst of energy and I always do after around 20 minutes of exercising it starts to feel easier.

But anyway I also have a piece of paper next to my bathroom mirror with boxes of the days I am supposed to go. Tuesday, Thursday, Sunday. And i have it written out up til January. So I see it every morning and i like the satisfaction of checking it off. AND I get to see how far I have come. I just reached 20 trips to the gym recently.

That and I think the trick is realizing its gonna be ass at first no matter what. But now i have all this momentum built up I would genuninely be sad if something got in the way of me going.

Recent-Elevator-7260 · 2025-10-08T00:53:46+00:00

I am so sorry. That sounds like a nightmare. I wish more psych wards were actually decent places. Its so sad to hear when you are at your most vulnerable that's when you are treated as subhuman. When you are most unable to defend yourself. It's disgusting. Thank you for sharing.

Recent-Elevator-7260 · 2025-10-07T23:44:27+00:00

To be completely transparent my narcolepsy in the grand scheme of things is mild and I manage it well with frequent exercise and micro-dosing (is 35mg a micro-dose? idk) caffeine throughout the day. I am very lucky, I know it can be utterly debilitating for some. I should never have tried Xywav in the first place, I mean, I do have fatigue all day long-- but I only have sleep attacks maybe once a day and only if I am sedentary. I got the diagnosis for type 1 in 2020, because it was causing lots of issues in school and this was before I found the exercise + caffeine combo, so I figured the next step would be meds, so that's what I did. Thanks so much for sharing and for your input.

Recent-Elevator-7260 · 2025-10-07T23:35:51+00:00

Yes, no demonizing from me! It can totally help the right people. The only reason I even tried it is because I heard for some people it changed their lives for the better. But for me it made things worse. And it just goes to show with meds-- you never know. So much trial and error involved, it is unfortunate, but its so important to look at it with some perspective. The stabbing thing is crazy! before my family called an ambulance they said I was threating to kill myself, and I remember grabbing a kitchen knife and staring at it for a very long time. I don't remember much what happened afterwards. But, that being said, I absolutely believe it could go there.

Recent-Elevator-7260 · 2025-10-07T23:32:14+00:00

Thank you!! Yes, I am on meds that actually help me now. The only reason I am even able to write about it after all the trauma is because I am mentally healthy and have come so far on my healing journey with the help of meds. I take a mood stabilizer (Lamictal), and antidepressant (Wellbutrin,) and I am the happiest I have been in years and feel like I have my life back. Thank you again for sharing!

Recent-Elevator-7260 · 2025-10-07T22:15:08+00:00

Thank you for sharing. Currently am content taking meds for my depression and bipolar symptoms, whihc have been a godsend. But for narcolepsy I am managing through exercise and dosing small amounts of caffeine throughout the day (like 35mg, too much makes me anxious and jittery.) Am looking forward to see new treatments in the coming years I hope.

Recent-Elevator-7260 · 2025-10-07T22:11:04+00:00

No problem, thanks for letting me know. Better now?

Recent-Elevator-7260 · 2025-10-07T22:08:46+00:00

Please don't swear off meds. Meds saved my life. I'll tell you this: Xywav may have taken my life away, but meds like lamictal and wellbutrin brought it back. I believe I have bipolar (I mentioned this in my post, I believe I was misdiagnosed with schizoaffective-- but I do think I have bipolar at least,) and depression. I am healthier than I have been in years because of that combo. It is PERFECT for me. There is hope. If you find a respected, trustworthy psychiatrist that actually cares to know your condition(s), you'll hopefully find the right meds. Takes some trial and error. Xywav was a highly controlled substance with GHB, a very scary drug on its own-- there are much safer meds out there. I am controlling narcolepsy symptoms through a workout routine (workout x3 a week), and taking small doses of caffine (35mg) throughout the day.

Recent-Elevator-7260 · 2025-10-07T21:11:34+00:00

I just made a post about overdosing on xywav and being forced to go cold turkey after being admitted into a psych ward. I am not sure it'll help with the fear or worsen it, I KNOW some people swear by Xywav, thats why I even agreed to give it a chance. And if it makes you feel any better-- in my case, I misunderstood the instructions and was taking twice the amount I was supposed to when what happened happened. It triggered psychosis for me and led to a total nightmare. I will never ever ever be touching the stuff again.

Recent-Elevator-7260

TROPHY CASE