Idiopathic Hypersomnia

Hi Allessio77. I have been diagnosed with Idiopathic Hypersomnia 4 years ago which was about a year after I started my CPAP therapy. My advice, first of all, is don't get too hung up on the term Idiopathic. The biggest reason it is Idiopathic is because it is rare, and there just hasn't been enough studies done on this. My sleep doc told me that she puts anybody in that category that doesn't fit in the category of narcolepsy. (which doesn't seem right to me) From what I have learned through various research and message boards, there are a few differences between narcolepsy and IH. One of those differences is that with IH you often have little or NO REM sleep. When they did my sleep study I not only had no REM sleep, but I also had no N3 stage sleep either. Also, from what I've read, with IH our sleep is not refreshing at all and we are typically VERY difficult to wake up. There is even a term called "Sleep Drunkenness" which basically describes our state upon waking up because we are so tired...well, we almost act drunk. Like walking into walls, etc. You can imagine. With Narcoleptics their sleep is refreshing. Also, Narcolepsy will sometimes have a symptom called Sleep paralysis. When they wake up, they can not move or even open their eyes for a period of time. I don't think this happens every day, just occasionally.

So, with all of that being said, I am wondering if your doctor considered a diagnosis of Narcolepsy as well as IH. I am also curious if your sleep study revealed normal REM sleep.

For me, personally, the only medication that works for me is Adderall. I have tried Provigil and Nuvigil, but one gave me a headache and neither really worked at all. They made it so that I couldn't sleep, but didn't give me any extra energy, so I would just lay in bed, too tired to do anything, but unable to sleep. NOT pleasant! The issue I have with being on Adderall is that I also have a bad heart. I have had two massive heart attacks, a double bypass and multiple stents were placed. It was tough getting any doctor to be willing to prescribe Adderall at all, but I struggle with not being on a dose high enough to work as effectively as it COULD because we can't go any higher because of my heart.

Anyway, if you want more info on IH, pm me. Especially if you have a Facebook page because there are some awesome support groups on there for people with both IH and Narcolepsy!

Good luck!