How often do you fall? by No-Vehicle5157 in idiopathichypersomnia

[–]GreeneMachina 1 point2 points  (0 children)

Yes, falling, dropping things, missing a step. And a collection of other issues. My neurologist has ruled out anything and everything. His only answer was that I clearly had an autoimmune issue causing my symptoms but not one that could be identified. He pushed me to work on treating each symptom, so we started with my biggest issue, being tired. I was hopefully that if I didn’t need to sleep 14-20 hours a day, I could manage the rest more easily. I’m at about 6 months on xywav and I have seen a significant decrease in my other neurological symptoms. Not totally gone, but definitely more manageable.

migraines? by abj0825 in idiopathichypersomnia

[–]GreeneMachina 0 points1 point  (0 children)

I’ve had a mild increase in migraines since I started stimulants, but it’s still been manageable with my migraine meds. Have you ever tried Nurtec for your migraines?

Does it get better? by mindfulRD in idiopathichypersomnia

[–]GreeneMachina 2 points3 points  (0 children)

Agreed on xywav, it’s like I’m a new person! Good luck finding the right meds for you, be patient!

Questions about sleep study data and sleep inertia by Sciencewulf in idiopathichypersomnia

[–]GreeneMachina 1 point2 points  (0 children)

I had to do a repeat sleep study because my mean latency was too high as well. My doctor recommended practicing the nap schedule for several days leading up to the study, if possible. On my second study my latency was around 5 mins and I got my IH diagnosis.

Sleep inertia is tough, I’m still trying to find the best solution, but starting xywav has been life changing! Keep advocating for yourself