How long did it take you to get an Idiopathic Hypersomnia diagnosis?
How many years? Were you surprised when you were diagnosed?
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)
It took me 20+ years. And, more recently, I have realized that symptoms that I thought were weird but hadn't previously considered to be related were probably early signs, so probably more!
