@SusanEllen66 - There is another discussion that you might want to join in on here:
--- Talking with your doctor about idiopathic hypersomnia...: https://connect.mayoclinic.org/discussion/talking-with-your-doctor-about-idiopathic-hypersomnia/

In my experience they usually start treating IH excessive daytime sleeping (EDS) with Modafinil or something like it. It's not an amphetamine, but it stimulates the central nervous system to promote wakefulness. I hear your point about sensitivity because I had a terrible response to Modafinil and it's brother Armodafinil (made me so nervous I could hardly get out of my chair). After Vyvanse, I finally ended up back with a common amphetamine Adderall which is in short supply right now. It helps with how I feel between naps by making more alert which had been a big problem for me. It definitely improved my life, but didn't really lower the amount of naps significantly.

Now I am taking Xyrem (like Xywav), to help me get a deeper sleep at night (it has been approved to treat IH now), and that is supposed to treat my EDS. It's incredibly expensive even though it's really just GHB which has been around forever, but is highly abused. I'm getting some decent results, but not enough for $9k a month, co-pay $1,700 (my co-pays are picked up by National Organization for Rare Disorders). My biggest problem is really with loss of working memory and cognitive ability. I’m getting ready for a bunch of Neurology tests to come soon I hope. I may have a post on that later

You have my best wishes. Please let us know how your journey goes. Better than mine I hope.

Hello @SusanEllen66. You will see that I have moved your post into an existing discussion on IH that you can now find here:
- Talking with your doctor about idiopathic hypersomnia...: https://connect.mayoclinic.org/discussion/talking-with-your-doctor-about-idiopathic-hypersomnia/

How was your appointment on the 30th?