Narcolepsy FAQs

Hello,
I thought I’d do a follow-up post to my last one, about me being diagnosed with narcolepsy. I’ve been asked a few questions a few times, so I thought I’d try and stop people wondering.
I should just say, these are my experiences and everyone has different degrees and forms of narcolepsy. One size doesn’t fit all.
Are you alright?
Yeah, fine.

Are you going to die? 
No. Well yes, one day, but not from narcolepsy. Unless I sleep-walk out of a window. A high up window.

Will you just fall asleep mid-sentence? 
Probably not. I fall asleep when I’m not particularly engaged with anything, like when I’m watching telly, or being driven in a car, or, when I was an undergraduate, during a particularly dull lecture. I do get sleepy though. Think Ovaltine x10.

Is there a cure? 
Nope. Next question.

What do your funny turns looks like?
Like this:

Is there medication?
Yep.

Are you on medication?
Sort of. I was taking two tablets, one to help me sleep through the night another one to help me stay awake during the day but I’ve stopped them now. The one to help me sleep didn’t really work so I’ll be starting another one in a week or so to see if it works any better.
I don’t think I’ll stick at medication altogether, but I felt like I couldn’t dismiss it without trying it.

So are there side effects? 
The first few days on my sleepy soundly tablet, I felt like my head was made of candyfloss and everyone was under water, like I was living in a giant sugary fish tank. The sensation was not pleasant. It reminded me of the one time I tried ‘happy pizza’ in Phnom Penh. It got better, but I was still sleep walking and very restless at night, which it was meant to curb.

The keepy wakey tablet had two main side effects: a lack of appetite and anxiety. I could live with the lack of appetite, but I just couldn’t tolerate feeling anxious all the time. I was awake, yes, but the cost for me was too high. So I stopped taking it (with GP approval, I should add).
On a side note, the keepy wakey tablet is one of those smart drugs students take to get them through.

Did that help with your Master’s degree?
Haha, no. Firstly, I didn’t start taking it till 2 days before I handed in my dissertation- I had to phase my meds in to monitor side effects- which was a bit late in the day, really, for it to make a difference. Secondly, I was taking it for proper medical reasons rather than a need to focus, so its smartening effects on me were negligible. No increased focus, no increased mental alertness, just less sleepy than I was. And the severe anxiety didn’t exactly make the last few days of dissertation much fun.

So what now?
Day time naps. And being a bit nicer to myself when I can’t keep my eyes open. I’m not lazy, I’m narcoleptic. I have a designated napping space in the office and it looks like this:

It’s not a long term solution but I’m getting used to it now. I have my 2pm nap for 15 minutes and then eat a banana when I wake up. My banana intake has skyrocketed since I was diagnosed, not sure why. I don’t even really like them, I just feel like I need a banana. Odd.

Has it affected your life in any meaningful way?
I’ll probably never drive, and I’m not thrilled about that. But I can’t risk falling asleep at the wheel.

Other things are more just irritating, like how travel insurance costs more because I have an”underlying medical condition”, and how volunteering at Glastonbury (something that we were half considering for next year) has become more tricky. I can’t say “oh no, I can’t do my 6 hour shift on a Gate E because I have to nap”, can I really?

Otherwise, I’m alright. People have expressed surprise that I’m not half asleep all of the time, but it doesn’t really work like that. I’m still very much a morning person, I still have the energy to run long distances, I can ride a bike without conking out halfway over Lendal Bridge. It’s my brain that gets confused about what it should be doing, and it usually happens when I’m not doing anything. I tell you, the dreams I have are epic.

If you do want to ask me anything, feel free.

Cx

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