At What Age Were You Diagnosed With Narcolepsy?

45 had it since birth but back then it was called chronic fatigue, or mono. or in my house I was called lazy. having narcolepsy in an abusive home was twice as hard.

I was 40 when diagnosed. In the process of finding a stimulant that worked, I started out on methylphenidate, and then others that did not work. We went on Adderall and worked up to 60mg a day. Better but still not even close to being alert enough for work or other things. They decided I must also have depression so they prescribed anti depressants. All of which sent me into depression. When I told them I felt way worse and couldn't do it anymore, they said we are gonna up the dosage. You have to give it more time. About 4 days later I was in my garage with a shotgun crying and thinking I can't live like this. I gathered myself up and decided I was no longer going to take that crap. Within a few days I felt like a million bucks compared to a few days ago. I never went to those shrinks again and found a different provider. He said he thought the problem was that I still was not being stimulated enough and that they should not have just stopped at 60mg of Adderall per day seeing I improved every time we increased the dosage. We got to 90mg a day 1 30mg tab 3 times a day and it was the first time in a very long time I was able to function relatively normal. I also tried desoxin,, that actually was the best I've ever felt. But gov. Regulation only allowed manufacturers so many pills annually. Instead of switching back and forth around Sept or Oct, I decided to stick with the Adderall. Been taking 90mg a day since 1999.

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.

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.