How long did it take you to get an Idiopathic Hypersomnia diagnosis?
How many years? Were you surprised when you were diagnosed?
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.
I mentioned it to a doctor who finally referred me to a sleep specialist how ultimately referred me to a Pulmonologist. My Pulmonologist “diagnosed” me in 30 seconds. I’m on a treatment. I’m still searching for a good treatment. I’m hopeful I'm glad both doctors took you seriously and investigated further. I hope you find a treatment plan that really helps and that better solutions come along in these next few years. - Lori (Team Member)
