ALICE'S story.
My name is Alice Cullen. I have recently been diagnosed with narcolepsy. It hasn’t been an easy process and it’s so very important to share as every one has a different experience so here goes.
So I have just turned 41 years old. I was diagnosed with narcolepsy with cataplexy in early December 2018. All through my childhood I was an excellent sleeper but had no problem with daytime sleepiness. I didn’t experience any problems at school, college or with study and was involved in many sports and extracurricular activities.
“In my experience the worst part for me was being misunderstood. I don’t consider myself a lazy person so I never thought that about myself. It had become a joke among family and friends about my power naps and little did they know that they were never or still are definitely not a luxury but a necessity. I don’t keep my diagnosis a secret. I think it’s so important to inform and it turns out that people are genuinely concerned and most often very interested!!!”
I started noticing a difference in my early/mid 20s. I’d come home from work for my hour lunch break, eat and sleep for 20 mins and back to work I’d go. Anytime I got in a car ( I didn’t drive at the time) , took the bus etc I’d be asleep within minutes. I never took much notice, not thinking I had a problem. I went back to college at 26 (4 year degree). I struggled getting up for early lectures, thankfully due to nature of the degree lectures were concentrated in the mornings - I would go home in afternoons to nap. I struggled staying awake in lectures and I found it so difficult to retain information. Still I ploughed on..
I graduated but stayed in my retail job because the hours suited ( late starts). A big regret of mine but looking back I wouldn’t have managed a full time Monday to Friday, up early, overtime etc.. I would often be found asleep, head down on canteen table ( still happens!).
About 5 years ago I experienced a strange sensation in my head one day when I found something funny. I can’t describe it too well, like a tightness, no pain and it was fleeting. I forgot about it until it happened again and this time I felt a slacking in my facial muscles and it continued over a period of a time spreading down my body until one day I found my knees buckling and I fell on the footpath ( I was in the company of my husband luckily) and knew then it was time to get help. Of course I googled my symptoms and Cataplexy came up straight away with its association to Narcolepsy (I don’t suffer from sleep paralysis or hallucinations).
My GP referred me to a Neurologist straight away who said ‘yes Narcolepsy’ and scheduled me for sleep tests .... locally... never happened. It was only after all of my symptoms worsened ( multiple Cataplexy attacks daily) that I asked my GP to refer me to a specialist in Dublin. Within 3 or 4 months I had my diagnosis.
It’s been bittersweet. I have changed my lifestyle- cleaned up my sleep schedule, stopped drinking alcohol, and was prescribed modafinil. I still need to work on diet and exercise but all things considered, the changes have improved how I feel immensely. I also had to stop driving for 4 months but thankfully can start again. I still need to nap and suffer from ‘brain fog’ - frustrating but I’ve learned to accept it.
In my experience the worst part for me was being misunderstood. I don’t consider myself a lazy person so I never thought that about myself. It had become a joke among family and friends about my power naps and little did they know that they were never or still are definitely not a luxury but a necessity. I don’t keep my diagnosis a secret. I think it’s so important to inform and it turns out that people are genuinely concerned and most often very interested!!!
I am extremely fortunate in that I have a fantastic support network. I’m hoping to change jobs soon - thanks to the medication I feel able. It’s been a long road but things are definitely looking up.
