How long did it take you to get an Idiopathic Hypersomnia diagnosis?

Hello! I haven’t starr re Ted treatment yet. I have my official follow up in the 22nd of this month. When the doctor called they explained the diagnosis and that they will want to start me on a more effective treatment when I have my follow up appointment, but because my sleep latency was terrible they wanted to ensure I was doing something in the interim. My primary care had started me on Modafinil to help with daytime fatigue and clonazepam to help induce REM and deep sleep from a sleep study I had a year ago. The doctor explained they will want to start me in a better bed time regimen, likely Xywav, because my sleep architecture need to be improved and they may try a different daytime medication since I still fall asleep taking Modafinil. I am excited to finally have answers and I am hopeful to find a treatment regimen that will help but also, I am a little afraid of the Xywav.

Hi . It can be scary to take anything that messes with the Central Nervous System, but lots of people have had good experiences with Xywav. I hope you're one of those people.
I am super excited for you to finally get on a good treatment path. Keep us updated, if you don't mind. Sending loads of positive energy your way. - Lori (Team Member)

That is such a long time to live with a misdiagnosis. I'm glad you finally got the right treatment and that it's helping. That must be a great feeling. Sending the best of all wishes your way. - Lori (Team Member)

Hi . Did his sleep study show breathing interuptions? If so, those interruptions might be preventing him from reaching REM sleep and leaving him exhausted not matter how long he sleeps. Here is an article that explains sleep apnea and its impact on overall health: https://sleepapnea.sleep-disorders.net/basics. If the study showed no or few interruptions, I'm not sure why they would prescribe a CPAP or how it might help. Many sleep specialists are pulmonologists, so they tend to look for breathing issues related to sleep instead of neurological influences. If he is not convinced he has sleep apnea, it might help to get a second opinion from a neurologist who specializes in sleep issues instead.

Here is an article about treatments for IH: https://idiopathic-hypersomnia.net/treatment. However, you'll see that IH medications mostly promote wakefulness. They'll help him stay awake, but they might not help him get REM sleep. Certain insomnia medications, like Orexin antagonists, can promote REM sleep. Here is an article about insomonia medications that includes a description of Orexin antagonists: https://insomnia.sleep-disorders.net/prescription-drugs. I hope this helps and that he can find a doctor who will offer a second opinion quickly. It can't hurt to try a CPAP, but three months is a long time to wait, especially since he's in the midst of pursuing his degree. There's no harm is looking for another doctor while he tries the CPAP.
Please keep us posted. I'll be thinking of you both. - Lori (Team Member)

you are incredibly kind. I truly appreciate your thorough response. My son had scored only a 6 in the apnea portion of his sleep study, which indicates very mild apnea. The cpap has not improved his sleep.

I will follow up as you suggested, but it’s hard to know where to turn for help.

Thank you so much,
Janis

Hi . I see you're new here. Welcome! What a journey. How did you cope and how did you finally get diagnosed? Warm wishes. - Lori (Team Member)