I'm like a bicycle, it's only when I stop that I fall over!!
Thinking back now, my first recollection of falling asleep in weird places was in lectures during first year in college, 1996. I don't remember any problems in 6th year of school just months before hand but definitely keeping alert during lectures was a problem. I seem to remember I just thought it was normal. I certainly didn't do anything about it, didn't go to a doctor, didn't say it to anyone. I just got on with it.
During third year of college I distinctly remember falling asleep while standing up on a bus. My knee walloping the pole I was holding onto woke me up fairly sharply though! I still didn't see a doctor. After college I started working and driving home one evening I dozily bumped my car into the one in front while crawling through rush-hour gridlock traffic. Luckily there was no damage and I had an understanding "victim" so nothing came of it. I STILL didn't see a doctor.
Fast forward to 2011 and I'd been through a few different jobs around the country, gone back to college to do a HDip, secured a full-time teaching job, bought a house, gotten married, become a dad and I FINALLY went to a doctor, thinking I had sleep apnea. The GP referred me to Dr. Crowe in the Mater and she got me to do the overnight sleep test, which I had done at the Bon Secours in Dublin. Of course it took a few months to get all this organised from the initial GP visit to the sleep test and in the mean-time I'd taken up running and lost a pile of weight, almost two stone. As a result the sleep test showed I was clear for sleep apnea but I had all the classic symptoms of Type2 Narcolepsy, without Cataplexy.
As you can see, the lead-time from initial symptoms to diagnosis was 15 years!! A course of treatment was organised and medication prescribed and with regular visits back to Dr. Crowe I've been managing my condition since.
I'd never met a person with Narcolepsy before, at least not knowingly. I'd heard about it but really only in the almost slapstick way it might have been portrayed in a movie or on TV. So I had to educate myself. The Narcolepsy Ireland FB page was very useful and I went to the first Suddenly Sleepy Saturday event I could, which was very informative. But the best thing I took from that day was that I wasn't the only one. There are plenty of sleepy-headed comrades and the FB group did offer a great support network.
The daytime sleepiness is the worst symptom as it has the most impact on how I live my life. I remember reading a phrase: "If you don't take the nap, the nap takes you" and it's true. I find it hard to schedule in regular naps so most days I get hit by a metaphorical train straight after dinner (6pm-ish) and I'm forced to sleep for anything from 15 minutes to an hour. My mood takes a nose-dive just before the nap too and it takes a while for the fog to clear after I wake up. Sometimes it doesn't clear at all and the rest of the evening is a write-off in terms of doing anything productive.
The other symptom that's tough to deal with is the sleep paralysis. I don't get hallucinations or visions of persons or beings in the room with me. I just feel like I'm trapped in my own frozen body. It usually happens just as I nod off to sleep and in the moment, I HATE it. My wife can usually recognise when it's happening and can wake me enough to snap out of it but I often lapse back into it over and over again until I finally get to sleep. The only saving grace is I usually don't remember it's happened unless she might comment "you had a bad night last night" the next day. But when it's happening, it's horrible.
Occasionally I get daytime REM intrusion. It usually happens after lunch at work, if I'm reading or sometimes even when talking to someone. I can feel my eyes "wobbling" and I try to get up and move around or do something to try to jolt out of it. I hope nobody notices, it's never been said to me so I think I'm getting away with it. It's a weird one though.
I've been prescribed Modafinil to treat the daytime sleepiness. I don't take it every day, I take it as I need to: usually when I know there's going to be a long drive or a long period of sitting passively. I'm in my current job as an adult-ed teacher for 12 years now and loving it. There are days where the heavy eyelids start but I find if I mostly stay standing and keep moving I'm OK. Watching my food intake (carbs in particular) helps to manage the daytime sleepiness. Without doubt a heavy meal knocks the stuffing out of me so if I know I need to keep alert like for driving or perhaps at a conference or a wedding or something where I can't (or shouldn't!) be napping I try not to eat much, even if I'm medicated. Buckets of coffee though at every available opportunity!
I tried the keto-diet and the whole bulletproof coffee carry-on. I gave it a solid month to see if it helped my symptoms but sadly it didn't. So I'm relying on my medication, stealing a nap wherever I can and watching the amount and type of food I eat to keep on top of the symptoms.
For a million reasons, I just can't get into any form of "sleep hygiene" routine. That's not how my life works. At home in the evenings, after the usual after dinner nap and the kids have gone to bed, I try to get to my garage where I spend a couple of hours at my hobby: restoring old Volkswagens. It doesn't work out every night: the fog doesn't always lift but on the nights I can get to the garage, it could be midnight before I come back to the house.
I've found that 6 to 6.5 hours sleep per night is about right for me. That one nap after dinner is usually about 30 minutes but if I can get up and outdoors before that one kicks in, I can escape it until bedtime.
Living with Narcolepsy
Life with Narcolepsy is challenging but I have to say that having a diagnosis and a treatment plan in place is far better than before I knew what was going on. Saying that, I managed to get through an Honours Degree, a Higher Diploma and four different professional roles before I got my diagnosis and didn't drop out of or get fired from any of them so I must have developed some coping strategies, unknown to myself! Even before I knew what I had, I had a kind of motto: "I'm like a bicycle, it's only when I stop that I fall over". So I found that if I kept going and going and going I could keep ahead of the wave. Thankfully, now the medication is there to fill in the gaps when keeping active isn't feasible.
Truth be told, it's a pain in the ass having Narcolepsy. Nobody would ever choose to have it, but I'm not going to let it hold me back. All I can do is make the most of the one life I have and live it as best I can. Just keep on keepin' on!