At What Age Were You Diagnosed With Narcolepsy?
I was 35 before I was diagnosed. I had an intern psychiatrist "wonder" if I had a sleep disorder but never saw him again when he left his training position. An MD didn't consider narcolepsy until I "drew" a diagram of what I now know was a cataplexy attack after feeling exuberant about something. He thought I either was bipolar or had narcolepsy so he sent me to a sleep specialist to run out the sleep disorder. Thank god he did. I have had this since around age 10, probably a year or two earlier than that. I was halfway through my PhD coursework before it was diagnosed. It actually was a huge relief to know what it was. I knew something was wrong but had no idea what or how to explain it to anyone. For me it actually was a gift to have it figured out. It wasn't treated effectively until I was nearly 50 and started using XYREM. It was a miracle drug for me. But even with XYREM I wound up on disability. But life is manageable now, but somewhat impoverished without employment. Still I feel lucky it was caught when it was.
Thank goodness to thought to draw your attack,
. How creative of you. I wish you'd still been able to work, but I'm glad you're at peace with it and that XYREM is helping. Hopefully, even better treatments or a cure is around the corner. Best wishes. - Lori (Team Member)
23, but I knew I had it before being diagnosed and had to tell my care team I needed the full sleep study, I don’t think they believed me until they saw the results themselves.
It has been hard to find a plan that works with my other medications and my current work environment so far unfortunately. It can be tough when you have other medical conditions. I hope you find a plan soon that works for you and allows you to live your life as fully as possible. - Lori (Team Member)
18 years old!
3 years ago at 39 years old. 25 years of symptoms.
#NotAnother25
