How long did it take you to get an Idiopathic Hypersomnia diagnosis?
How many years? Were you surprised when you were diagnosed?
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!
It took 10+ years for me. The doctor who made the diagnosis was absolutely wonderful. She was interested in the 'whole' person and how my life was being affected. She knew not only what was going on with me but she also took into consideration that numerous relatives in my father's family had dealt with similar issues. Appointments lasted an average of 30 to 45 minutes and often ended with a hug. Unfortunately for me she took a position at a VA hospital (but good for Vets). My current 'sleep' doctor's appointments last 10 minutes max. He is certain using a c-pap is going to 'cure' my problem so he only fills my meds 1 month at a time, forcing me to contact him each month for a refill. What a change!
Hi
. I'm glad you had such a great experience with the first doctor, but this new one sounds far less empathetic and communicative, and maybe not so familiar with IH. Have you considered finding someone new or do you want to stick with this doctor for a while? Have sleep tests ever shown any sign of sleep apnea? Best wishes. - Lori (Team Member)
25 + years. I wasn’t surprised. I was relieved. I felt vindicated, excited, and hopeful. After 25 years of being dismissed and gaslighted, I was thrilled to give it a name. It having a name confirmed what I already knew - I was not making this up.
After being diagnosed have you seen any actual improvement? I’m on a treatment now, so yes, things are better than I was unmedicated. Not perfect, but better. And now that I know I have a disability, I have an accommodation at work.
I’m grateful to finally get a diagnosis
