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Talking with your doctor about idiopathic hypersomnia...

Posted by toryinhampton @toryinhampton, Apr 20, 2023

During this past year, I was diagnosed with idiopathic hypersomnia. After trialing several medication's the only option that appeared to have an effect on this disorder was Adderall. Though I am on 30 mg of Adderall XR in the morning and 20 mg of Adderall in the afternoon, I am still having difficulties in staying awake. How do I address this topic with my provider and share with him that the current dosage is not working? I am concerned my doctor may believe I am drug seeking, and I'm finding it difficult to have this conversation. My mother was a prescription drug addict, and I am extremely aware and careful with everything I take.

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Profile picture for SusanEllen66 Susan McMichael
SusanEllen66 Susan McMichael | @SusanEllen66 | Jul 6, 2023
In reply to @amandajro "Hello @SusanEllen66. You will see that I have moved your post into an existing discussion on..." + (show)
Profile picture for Amanda Roe @amandajro

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?

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@amandajro the neurologist gave me a prescription for Armodafinil but neglected to get pre-approval from my insurance company. So now I’m waiting for the approval so the pharmacy can fill it.
He is starting me on a half dose for the first week. I will let you know how that goes when I get it!

Thanks.

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Profile picture for autnchris
autnchris | @autnchris | Dec 5, 2025
In reply to @timbrownfl "In my experience they usually start treating IH excessive daytime sleeping (EDS) with Modafinil or something..." + (show)
Profile picture for Critically Thinking @timbrownfl

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.

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@timbrownfl I tried Xywav for about 4 weeks recently, and it gave me side effects and made me feel worse, if that was even possible. I am miserable. I have been up since the alarm clock went off almost 3 hours ago and I am having a hard time keeping my eyes open, my body also hurts all over from my Rheumatoid Arthritis.

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Profile picture for autnchris
autnchris | @autnchris | Dec 5, 2025
In reply to @SusanEllen66 "@timbrownfl hi Tim, I was diagnosed with IH yesterday. I saw your interesting post and I..." + (show)
Profile picture for SusanEllen66 Susan McMichael @SusanEllen66

@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!

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@SusanEllen66 I was also curious about NORD

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autnchris | @autnchris | Dec 5, 2025
In reply to @timbrownfl "As far as NORD goes, I see that IH is not on their list of rare..." + (show)
Profile picture for Critically Thinking @timbrownfl

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.

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@timbrownfl Caffeine does nothing for me either

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