How long did it take to get diagnosed with narcolepsy?

Thanks for your great post. My experience was very different, and still going on - at least until 3 days ago. My crazy hypersomnia started at 61, and I was diagnosed about 20 months later. Later I changed to a different sleep center and my doctor there continued with the Narcolepsy Type 2 diagnosis (he was the director of the center). He insisted that I see Neurology about my memory problems, and they moved me to one of their own, a Neurologist Sleep Specialist. Before I even met the guy he changed my diagnosis to something absolutely ridiculous and stopped my narcolepsy medications. He refused to answer any of my objections for the next seven weeks until I finally blew a cork! Okay I'm a bit of a high agitation type, but I had never gone that far with a physician. I was back to no diagnosis, and I was going nuts. He kicked me out of the practice which left me with nothing. Scared? You're not kidding I was scared. These people don't seem to care or understand what us patients are going through. What was going to happen to me?

Fortunately I found a new practice and saw the doctor just the other day. I'm back on my meds and everything is much better. Phew what a trip.

Sleep Medicine is a very difficult mine field to navigate for all of us apparently.

It took almost five years from when my sleepiness suddenly got way worse in 6th grade to diagnosis.


After I had a hospital stay due to "stress" (in hindsight caused by keeping myself awake and beating myself up for performing below my potential in school), I decided that I was confident in my research and sought a referral. Turns out, sleeping through Saturdays and keeping yourself awake with yt videos after school is not normal. I also didn't believe it was puperty, anymore.


That was in fall of 10th grade and I got the appointment around Easter.
Getting the right meds was (and still is) more of a problem, honestly.

I've had narcolepsy as far back as I can remember. My sister, who is 1 year and 8 months younger, recalls me sleepwalking when she was 3 or 4, which would have made me 5 or 6. I've always been sleepy during the day.

At around 30, I was diagnosed with ADD and prescribed Ritalin. A year later, I was prescribed Paxil for anxiety. After starting Paxil, I decided to stop taking Ritalin due to its stigma. However, I began experiencing extreme fatigue and continuous yawning, even while driving. My doctor suggested a sleep study. After the nighttime study, I had a daytime nap study where I fell into REM sleep in under a minute.

I was diagnosed with Narcolepsy Type 1 and prescribed Ritalin again. I realized then, I would always need stimulants and had been self-medicating before my diagnosis. The sleep doctor also wanted to prescribe Paxil, but I refused due to the withdrawal symptoms I had experienced.

I was around 32 at the time of my narcolepsy diagnosis.
It took another 20 years before I was prescribed Cymbalta for anxiety and depression. As a bonus, it alleviated my fibromyalgia pain, stress incontinence, and overactive bladder. I also noticed I was no longer experiencing sleep paralysis, night tremors, and hallucinations, which I hadn't realized were caused by narcolepsy. Despite these benefits, it didn't significantly impact my anxiety and depression.

I am now 58 and have been taking Ritalin for approximately 28 years, Cymbalta for approximately 3 years, and Adderall for about 2 years. Although, my narcolepsy is being treated, it has gotten progressively worse in the past 5 years. As a result my employment which began June 9, 1999 was terminated January 8, 2024 after almost 25 years of service. That is a story for another time.