Diagnosing and treating idiopathic hypersomnia

Sleep Health Sleep Disorders
1

I’ve struggled with excessive daytime sleepiness for about 15 years. I have been treated for anxiety, depression, ADHD, and ruled out many other underlying issues. I have had two normal sleep night time studies, one of which was followed by an MSLT test that indicated IH. I have chronic migraines and took my pain prescription too close to my sleep study and it showed up in my drug test. I took one of my prescribed fioricet pills, which contains Barbiturates. I also didn’t stop taking Adderall soon enough so that showed up in my drug test as well. My sleep specialist said that because Barbiturates can cause sleepiness, I need to redo my sleep study bc he can’t diagnose and treat idiopathic hypersomnia without a spotless sleep study, even though everything is pointing to IH.

I am so disappointed in myself for making such a careless and preventable mistake and delaying progress towards checking another box even more. I am deploying with my family for my husband’s international assignment through the national guard, so I won’t be in a position to redo my sleep study for another 2 years. I’m so desperate to improve my current level of functioning and sleepiness so I can be/do better for my family.

Is this typical and expected that one prescription pain pill could prevent/postpone a diagnosis and exploring treatment options for IH? Is it worth bringing my results to another sleep specialist to see if they are willing to help me and prescribe something like XWayv to see if it helps? Or since XWayv is a restricted substance do I need a perfectly clean sleep study to be considered for this medication? Thank you in advance for any information or advice.

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Hi Ali,

First off, don’t beat yourself up for not stopping your meds on time. You take them for a reason, and it’s easier said than done to go without them for a period before your sleep study.

I can’t speak to whether another sleep specialist would be more willing to officially diagnose you. What I will say is that two years is a long time to go without treatment, especially if your doctor highly suspects you have IH and there’s potential that a new medication could help you.

I would certainly try bringing your results to another sleep specialist and seeing what they can do. If the answer is the same, I would really look into taking another sleep study while you’re abroad. I’m not sure what you’re coverage looks like during this period, but I’d say improving your quality of life is worth whatever hoops you’d have to jump through.

In the meantime, here are some resources for living with IH:

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