If a primary care doctor cannot help,try different docs until someone does. Psychiatrist, sleep specialist. The doc who diagnosed me is a lung/sleep specialist. Prior to this dx with hypothyroidism. Low thyroid many similar symptoms to narcolepsy. In addition since early childhood, periodic fainting. In my 40's it was happening again. After many heart tests. Dx with idiopathic síncope. Which means I faint &they don't know why. I was being treated for thyroid but, kept complaining about tiredness. As I got older it was getting worse. My fear of possibly falling asleep while driving pushed me to complain &request some medication to help me stay awake
The psychiatrist prescribed Adderall. I took that for years. Finally spoke with primary doc & said I'd like to know if my thyroid is well controlled, why am I still so tired. Sent to endocrinologist, hadn't been to one since thyroid dx. Who in turn sent me to sleep specialist. After nightime &daytime testing finally dx with narcolepsy. After discussing with this doctor, I probably had this most of my life. When asked if I ever wondered if others had my experience like falling asleep on the bus only to be awakened by the driver at the end of the line. Or how I could doze off standing up. Or if I'd be sitting waiting anywhere, I would fall asleep. I always thought well im just tired. &if this is your norm, how would you know it's abnormal. Anyway I was in my late 50's before finally diagnosed
Now I take armodafinil. It has less side effects than Adderall. For me. Everyone is different.
I shared in hope this info will help anyone else. With proper treatment hopefully you too will find a way to cope.

The though of losing my license has occured to me but only cause our legal system would rather suspend you before investigating. Let's face it... If any of us have an auto accident and someone knows we have narcolepsy the could claim we fell asleep at the wheel and sue the hell out of our insurance company claiming we never should have been on the road. It's probably unlikely but always possible. I say to hell with that. I'm a pizza delivery driver. I've done it for almost 20 years. By the grace of God I've had one accident... On a super bowl Sunday I was rear ended. No damage no cops. I told the lady I prefer to get on with my day cause you hit me and I have no damage so why waste our time. I'm nervous for a different reason. I'm on stimulants of some kind... Currently it's coffee or red bull and bronkaid. It hasn't always been that innocent. I served 3 years in prison for self medicating. The system failed me on many levels but I'm surviving. One question.. how does anyone with narcolepsy find a wife or even a gf when the entire day is devoted to working enough to survive and sleeping enough to be able to work?

Prior to diagnosis, I used google and and used websites like NHS website, webmd etc to get an idea about symptoms.

But following diagnosis, the best information for me has come from narcolepsy communities and other people with narcolepsy. I learned a lot more about narcolepsy past the standard typical symptoms

My pleasure! I wanted to learn everything I could and find good support for interventions besides just medication, which is the only thing my doctor suggested. I feel much calmer knowing what I might experience as the condition progresses and giving names to my experiences. As well, I feel more in control of the disease progression, which (true or not) has given me a level of peace. I'm in a much better place healthwise than I've been in a long time. So, I'm happy to share my resources with others in hopes that it might help even one person.

"The Nocturnal Brain: Nightmares, Neuroscience, and the Secret World of Sleep" by Guy Leschziner
Narcolepsy: A Funny Disorder That's No Laughing Matter by Marguerite J. Utley
Narcolepsy Network: https://narcolepsynetwork.org/
Wake Up Narcolepsy: https://www.wakeupnarcolepsy.org (Especially check out their Brown Bag webinar series)
National Sleep Foundation: https://www.sleepfoundation.org/narcolepsy
The Wahls Protocol by Dr. Terry Wahls: https://terrywahls.com/the-wahls-protocol/
Dr. Terry Wahls automimmune support website: https://terrywahls.com/