3 replies to this topic

[tiredofbingtired]

I am new to all of this and was wondering how you can be sure it is idiopathic Hypersomnia. I don't even know where to begin, all I know is that I have always been tired. I am in my middle 40's and don't remember a day I wasn't. Even pictures of me as a kid I look sleepy. My husband and kids finally convinced me I needed to get checked again. When my sons were little I was told I had OSA and put on a CPAP. When I was good with it I felt better, but to be honest I hated that machine. Sleeping in it was very hard, I would wake up and take it off, sometimes I didn't even remember doing it. So getting checked at a sleep lab was not unfamiliar to me. But after seeing my PCP and answering questions about narcolepsy, I got very concerned. Long story short, my sleep studies (day and night time) showed I didn't have OSA but did have IH. The EDS was the only thing I experience so narcolepsy was ruled out.
OK, my question: How do I know for sure it is IH? Blood work r/o diabetes, llyme disease, an iron deficiency, and lupus. My thyroid is regulated with levothyroxine, so that's ok. The only thing that is not helping is the epsteins Barr virus showed active (doesn't help the EDS). I was told that medication spud help and after having a difficult time tis past weekend I think I am going to give the Ritalin a try (generic of course). Would a neurologist or Nother sleep doctor tell me anything different? Are there any other conditions this could be? I was told about hemacromatosis and was considering being tested for that too.
Any advice would be helpful, feeling alone and crazy lately.

[LauraL]

Hi Tired,

I'm not a doctor, so my advice is worth what you're paying for it, but my understanding is that an idiopathic hypersomnia diagnosis is essentially a diagnosis of exclusion--you show some symptoms of a sleep disorder, but don't fit any of the diagnostic criteria exactly. It seems from what I've read that the distinction between narcolepsy without cataplexy and IH is sort of fuzzy--and that there isn't widespread agreement on exactly what criteria place a person in one diagnosis versus another.

Once they ruled out OSA as my problem, I stopped seeing the sleep pulmonologist my PCP referred me to, and made an appointment with a sleep neurologist. She was a lot more knowledgeable about narcolepsy and IH. I also went back to my PCP in between and talked with her about other things it might be, and she ordered some more tests.

The "explore all avenues" approach seemed to work for me! Good luck!

[okami]

I was put though the whole CPAP thing as well even though I was marginally above the 'normal' index. Eventually, I was diagnosed with IH as well.

That didn't sit well with me for a few months. I felt like it was a dx that said "As doctors, we don't know what is wrong with you so we're giving you a half-a**** dx."

After I got over that, I realized that I still have access to the meds I need to function so I shouldn't worry about what exactly I really have.

My advice is to not worry too much about it. You should still have access to the stimulants. The only reason really to seek further is if you are experiencing cataplexy. If you still pursue further dx, just come to grips with the fact that not many doctors know about this disorder so it will take some time till you get that elusive dx of Narcolepsy (which might bring more problems than relief with it since you might be required to report to the DMV and we all know how much they love hearing that you might fall asleep while driving).

So I've rambled on too much. Hope I helped you out some with my experience.

Good Luck!!

[tiredofbingtired]

Hi,

Thank you for the advice. I am not going to give up. I will give the medicine a try and see how it goes. I do feel there are other things to have ruled out, so I will work on that too. Thanks again for taking the time to help.