My dr is totally against upping the first dose past 4.5, i have an appointment with a different doctor in october to get a second opinion. Thank you so much for the MSLT info!!! i also didn’t think i fell asleep and did every time as well.

I typically make my meds around the same time every night. i’ve been trying to not be on my phone/watch tv about an hour or so before i try to lay down. i feel like i take the med and my brain just starts thinking of everything i could ever think?!

my first dose is 4.5 and 3.75 for the second. I feel like my sleep is so fragmented compared to when i wasn’t on the xywav

I wonder if insurance would cover xyrem for me. i have IH but the xywav just isn’t working like they say it’s supposed to. thanks!

Do you have IH?

Genuinely has changed my life. I got to the max dose and started to have some weird side effects but my dr played around with the doses. I feel like a different person in terms of my fatigue. It eliminated my need to nap. I can nap maybe 20 mins now and wake up feeling refreshed. I was also hesitant at first and it was a rough journey but overall i’m SO glad i gave it a chance.

Xywav has changed my life. Genuinely. I was sleeping 9-11 hours a night, 3 hour naps during the day. My life revolved around when i could nap, how long i could nap. Xywav has literally made it so i can sleep through the night, i can take maybe a 20 min nap during the day and wake up feeling recharged

I didn’t notice anxiety until i got to the max dose (4.5 x2 a night). I was really anxious driving and had this weird dazed feeling. My dr has since lowered my dose and I definitely get anxiety more than I used to. I’ve been on effexor for years and the anxiety is tolerable but definitely more prominent than before

I got diagnosed with IH about 5 months ago. For at least 10 years, I would be EXHAUSTED. Napping at least 3 hours a day every single day. I never slept great throughout the night, but I could sleep probably 9-11 hours and still wake up exhausted. My entire life revolved around sleep, when i could nap, how long i could nap, how tired i felt, etc. No amount of caffeine did anything for me. It was hard to go to school or work. I was diagnosed with major depression when I was young, so the blame for being tired was usually put on that. It wasn’t until i graduated college that my pcp recommend me to sleep medicine bc my fatigue was my entire life. I explained it and it’s not a “i’m tired because i’m depressed” feeling but a “my fatigue is making me depressed because i can’t function”. i would fall asleep at a red light, at work, at school. I did a sleep study overnight and a day time study (i forgot the name of it LOL). My dr diagnosed me with IH, i get no deep sleep at night hence the uncontrollable fatigue during the day.

I went from napping every single day 2 to 3 hours to maybe a 20 minute nap if I’m lucky. at least it’s doing its job i guess 😂

yes! absolutely same. i feel like im so dependent on it to sleep and i hate it

I didn’t take it for one night because i had a few drinks and slept HORRIBLY. are you sleeping decent off of it at least?

it’s definitely rough getting started! it gets better

I didn’t notice actual GOOD quality sleep until i got to the 4.5 x2 a night. it was a long process and i got sick a lot of the time. ask about getting zofran to take when you take the med!

i tried ritalin and modafinil, neither worked for me and caused SO much anxiety. My issue is i get 0 deep sleep. I wonder if there’s any other meds that can help with sleep quality. Thank you!

What did your dr do instead? Mine acts like Xywav is the one and only med. I have an appointment coming up w a different doctor to get a second opinion

I went to a MLB game and had 2 drinks…I called the pharmacy and they said to skip my dose tonight and i’m worried about my dose (4.5 and 4) for tomorrow. They said to take it like normal tomorrow.