Talking with your doctor about idiopathic hypersomnia...

Welcome @toryinhampton, I know it can sometimes be a problem talking with your doctor if you are uncomfortable about the topic. The Sleep Foundation has some information you might find helpful for starting the conversation with your doctor.

"In addition to your sleep diary, tell your doctor what strategies, if any, you've tried to relieve your sleep issues and what effect they've had. Write down any medications you are currently taking for any health conditions. Finally, make a list of the questions you want to ask your doctor about your sleep."
--- How to Talk to Your Doctor About Your Sleep: https://www.sleepfoundation.org/sleep-studies/how-to-talk-to-your-doctor-about-sleep.

@timbrownfl, started another discussion here that you might find helpful:
--- Xywav Narcolepsy/Hypersomnia Med: https://connect.mayoclinic.org/discussion/xywav-narcolepsyhypersomnia-med/.

Do you keep a daily diary or log to track your sleep?

Thank you so much for your response and resources. I've never kept a daily log of my sleeping periods but plan on tracking beginning tonight. I still have a couple of weeks before I meet with my doctor again so maybe with the log it will shed a little light, or at least a glimpse. Some days are much better than others, then there are "triggers" that set me off. It's good to know there is support. Thank you!

Hoping you can get some relief soon. Can you let me know how your appointment goes?

I thought I might have IH for a while, but my doctor settled on type 2 narcolepsy. I doubt it makes much difference with the treatment we receive. I too have been on Adderall for a while. I know one thing from my experience you could tell the doctor. Two Adderall pills, whether 20mg or 30mg, does not cover a day. If you take one in the morning it wears off (for me gone in 5 hours), then you crash where it becomes useless for keeping you awake. After that, the second dose follows the same pattern. The crashes also have nasty effects on your emotions. The other thing is that Adderall doesn't really keep me from sleeping anyway. The best thing it does is to make me alert and productive between naps. That is not a small thing. Before Adderall I was completely useless all day long, and I had a lot of emotional problems, enough to check into a psych facility..

Now I have just started Xyrem (just like Xywav), and it has shown a little promise so far. Combined with Adderall I have been awake all day a few times which is really nice. They ramp you up slowly, so it will be a while before I know the full effect. The idea is to stay awake all day after weaning off the Adderall. It’s wicked expensive, but there is an organization called the National Organization for Rare Diseases (NORD) that picks up my tab.

Good luck; I wish you the best! Keep the updates coming.

I was just diagnosed with IH this afternoon and have been doing research ever since. My appointment with my neurologist is on the 30th. I was told we are going to discuss treatment options for me then.

My concern is for my body’s overreaction to medications. I am hypersensitive and can’t take some of the meds I need because of my reaction to them. If they give me something to keep me awake during the day, I will probably stay awake for days! 😉

I’m happy to know the reason why I feel so tired all the time. If anyone has any suggestions please let me know. Thanks!

@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.

@timbrownfl hi Tim, I was diagnosed with IH yesterday. I saw your interesting post and I have a question. How did you get NORD to pay your co-pay? Sorry if I’m being rude but I’m a member of NORD and I’m am not aware that they did that! Great news!

I’m afraid of taking any medication for this IH stuff. My body is extremely sensitive to all medications and I don’t know how I would react.
Maybe I could just drink a lot of caffeine all day. 🙂

Hopefully you are doing well!

As far as NORD goes, I see that IH is not on their list of rare diseases. Maybe that's because the focus on IH is new compared to Narcolepsy which I have. I'm really a narcoleptic with symptoms very much like IH, and Xyrem/Xywav is used to treat both.

Perhaps you could tolerate a low dose of Modafinil or Adderall, but from what you say I'm not sure you want to do that. I'm not doctor of course.

Caffeine does nothing for me!

Good luck.

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?