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Real members of MyNarcolepsyTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Who Or What Source Of Information On Narcolepsy Has Been Most Helpful To You?

Who Or What Source Of Information On Narcolepsy Has Been Most Helpful To You?

A MyNarcolepsyTeam Member said:

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.

posted 23 days ago
A MyNarcolepsyTeam Member said:

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

posted 24 days ago
A MyNarcolepsyTeam Member said:

To be quite frank, my own body has been the best source of information. For many years, I had no idea what I was dealing with, but somehow my body gave me cues to do things that once diagnosed turned out to be the right things, like exercise, napping, eating fewer carbs etc. It's so important in this disease to listen to your own body and I believe that a lot of the time, that's what we intuitively do anyway. The real problem is society doesn't always agree that you should sleep at 11am in the morning or avoid the gym in the evening or eat chicken and salad for breakfast and when we do these things we have to put up with funny looks or uncalled for comments!

posted 3 days ago
A MyNarcolepsyTeam Member said:

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?

posted 24 days ago
A MyNarcolepsyTeam Member said:

Well I’ll be frank. I guess the doctor that caught it but soon after that gave recommendations that were ridiculous. I’ve self medicated all my life because I’m fearful of loosing my license. So I guess myself for figuring out what works enough to get by and finally this forum who gives me information for others experience.

posted 25 days ago
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