- Narcolepsy
- Interviews
chazer25's interview
How did all start?
For several years after my daughter was born, I worked swing shifts (3 12-hour night shifts, 3 days off, 3 12-hour day shifts, etc.). I blamed my sleepiness on a constantly changing sleep schedule and keeping up with a baby / toddler. When my daughter was 5, I moved to a day-time job (8-4). And even after a full night sleep, I was falling asleep at work. So I went to the doctor for a bunch of tests (thyroid, vitamin deficiency, metabolic, hormones) and was astonishingly normal. It took about another year before I was sent a sleep specialist for the overnight test and the MSLT.
Do you already have a diagnosis? How long did it take you to get it?
I was 31 when I was diagnosed. I've suffered from excessive sleepiness my whole life.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Being treated by a neurologist or a certified sleep specialist has been most helpful for me. My primary care physician, while a great doctor, just doesn't have the knowledge about sleep disorders that the specialists do.
What has been the most useful thing for you so far?
Medication!
What have been your biggest difficulties?
Medication! - The pharmacological companies keep making generic versions of the medications I'm on - and the generics just don't work as well.
How has your social and family environment reacted? Have your social or family relationships changed?
My family knows and understands the disorder. I don't think things have changed much.
What things have you stopped doing?
Nothing. I still live my life the same. I'm just more careful about when I drive.
What do you think about the future?
I'm concerned that my symptoms seems to be getting worse as I get older. Also, as a peri-menopausal woman, the night sweats interrupting my sleep even more are becoming a problem.
So far, which years have been the best years in your life? What have you done during them?
All of them have been good :) I just live my life. It's the only one I get.
What would you like to do if you didn’t have your condition?
There's not much I wouldn't do WITH narcolepsy.
