How long did it take you to get an Idiopathic Hypersomnia diagnosis?
How many years? Were you surprised when you were diagnosed?
My son, age 25, is a PhD student, struggling with anxiety and sleep issues since high school. He waited one year for a 24- hour sleep study, which revealed it took 7 hours to reach REM. He currently sleeps 15-16 hours per day. The sleep clinic prescribed a cpap and wanted him to try it for three months. It is not helping at all. He may need to leave his school program because of the excessive need for sleep. We don’t know where to turn for help. Is there any medical help for this condition?
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
25 years
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)
I found out at 57 years old, SMH but the part that is most frustrating is what this Beautiful Soul said years and years of not being heard and the fact that no one acknowledges the effects it has on us (work, safety, chores, socially)
We hear you. It can really hurt at your core when people fail to acknowledge how disabling a sleep disorder can be. We all sleep and we've all had trouble sleeping or staying awake, so it's easy for people to assume that sleep issues go no deeper than that. I am noticing a lot more advocacy lately though, which leads to awareness. Hopefully, that will make a difference in the future. Thinking of you. - Lori (Team Member)
Thank you for being open and sharing your journey.
I’ve only discovered the term Idiopathic-Hypersomnia in the last 2 weeks. It’s been eye opening, to say the least.
Why no sleep doctor, who always read my CPAP reports, can’t see I wear my CPAP far too many hours sleeping per day hasn’t said,
“…wow, you sleep a lot more than most people”, I do not know.
Today I requested a new appointment with my sleep specialists.
Did you need to do a sleep lab test to see the patterns of your sleep?
I had an at-home test decades ago to diagnose sleep apnea, but nothing else.
I’m loosing my life to sleep.Welcome to the community and thanks for sharing your story. I imagine there are some mixed emotions. Great to have a diagnosis but also, now what!? Just know you aren't alone. One of our health leaders wrote a great article that explains how an IH diagnosis is just the beginning (https://idiopathic-hypersomnia.net/living/diagnosis-is-just-the-beginning) This may be of interest in your current stage. Warmly, - Reggie, Idiopathic-Hypersomnia.net team member
Welcome,
! That's wonderful article Reggie shared with you, one of my favorites. Here is another one about the diagnostic process that I thought you might find helpful: https://idiopathic-hypersomnia.net/diagnosis. You will likely need another sleep study just to rule out other possibilities, unless your other study was recent. Let us know how your appointment goes, if you don't mind. I hope you get some answers. Best wishes. - Lori (Team Member)
