#xywav

also- i feel like I’m going crazy, but has anyone else on xywav noticed other things tasting bitter/salty? not like from the aftertaste, i mean like after i wake up and eat food and brush my teeth and all that, i go to drink some water and it tastes strangely bitter? at first i thought my water filter needed to be replaced, except my bottled water tasted the same….

I've never tried MiO, so if anyone has, what was your experience?

for the last 3-4 years (but especially the last two), my hypersomnia has literally been ruining my life. day by day, it was destroying me. i couldn’t make it through a single day without needing 15+ hours of sleep.

three weeks ago, for the first time in two years, i made it through an entire week without needing to nap. i was awake for a full fourteen hours without needing to nap every day for seven days straight.

xywav has given me my life back. i’m going on hikes again, hanging out with friends i’ve missed, and doing all the things i was too exhausted to do before.

It's been a really crazy month. Early on, I was given a light diagnosis (PCP only so far - sleep study and specialist pending) of idiopathic hypersomnia after seeing a Xywav commercial and, as it suggested, asking my doctor. I'd only been reporting the constant total exhaustion for 35 years with no one really interested. You can read my "Welcome to IH" article on Medium. Then, before I could get any medicine or make it to a sleep study/sleep specialist, my husband had a total knee replacement, which led to a hernia, which led to his intestines moving into his chest, which led to an emergency surgery, which led to a still-exhausted-not-yet-medicated me having to take care of him now.

I finally started Modafinil yesterday. It did nothing. Perhaps it will just need to build up a bit in my system. We shall see... but I'll be blogging all this out here. Maybe I'll find some others to talk to.

However, I am still exhausted most of the time. I'm just awake and exhausted. Which is better. Still not very punk rock, but better than I was before.

Side effects include: more emotional blunting than I already have from the IH, not much appetite during the day, major munchies at night, joint pain, was getting horrible headaches at first, pissed the bed a few times because I was too zooted to wake up and go pee (lol), can't walk straight when I do get up at night to pee so I gotta hold onto the walls, etc.

My sleep doctor has ordered me to get more exercise during the day to help with alertness. Apparently, walking my dog "doesn't count". I don't want to disappoint my dapper old French man sleep doctor, so I joined a gym. It's a pain in the ass, but it does kind of help.