After years of living with IH my doctor thinks I have N1 and wants to make another sleep study. Is it worth it?

Diagnosis/Testing

Hi, I was diagnosed with IH many years ago and have had the symptomps over a decade. Last spring my symptomps changed a bit. I started experience what my doctor thinks is cataplexy and while my EDS is as bad as before, my nightime sleep has went from sleeping tons to can't stay asleep, very fragmented tons of nightmares and sleep paralysis. My doctor says this sounds very typical for N1 and for some patients the symptomps just develop over time.

He wants to do another sleep study. Before I got IH diagnosis I had to go trough 3 sleep studies because I was so nervous (new places and situations are hard for me) I was just crying all the time and could not get enough hours to the overnight study to do the day one. Finally 3rd time I was calm enough to do it and got my IH diagnosis. Back then I had REM on only one nap so they went with IH. But the whole ordeal was torture, and I swore I'll never do it again.

So now I am thinking is it worth it to go trough all that again for N1 diagnosis? My doctor says they wanna prescribe me xyrem and if I don't have narcolepsy diagnosis, even the cheap version is gonna cost 100€ per bottle where I live. I don't have that kind of money. With diagnosis it'd be 60€ and even that is a stretch for me. Doctor said he could also just give me something for the cataplexy without diagnosis but giving my other conditions and medications there is not many options for me.

I'm just thinking... what is the point to go trough that torture again if I can't even get the meds. I'm a university student currently and money is super tight. I'm talking about my food budget is 80€ per month kinda tight. I know it's gonna be easier money wise eventually, but I can't help thinking if I go for it, get the meds and they don't work. Doctor also said xyrem is the only one there is to try. So if it does not work it was a waste of time. I also have phobia for medication, I am currently on medikinet and it took me a month of crying and panic attacks to be able to take it without being afraid of dying. I know logically it's not very common thing to happen but it's just a phobia from previous terrible experiences. Especially with meds like xyrem, i'd probably need a lot of support and time to be able to take it.

I think I'm just looking for support, if anyone's been in situation similar to mine, or any advice you'd do in this kind of situation. Not asking for diagnosis, just support and advice :) Also sorry if i used wrong terms or anything, english is not my first language and while im pretty fluent, my vocabulary of medical terms is kinda limited :D

Posted Jul 17, 2025, 8:26 AM UTC

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