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Living With Narcolepsy

Narcolepsy is a sleep disorder in which the brain’s ability to control the sleep-wake cycle is affected.

Narcolepsy is much more widely recognised now, but there are lots of misconceptions around it

Symptoms of Narcolepsy include disturbed sleep at night time and excessive sleepiness during the day. Some people also suffer from cataplexy, in which people suffer from limpness through the body when experiencing emotions like laughing or crying. When this happens the knees may buckle or the body may collapse. As normal sleep patterns are affected, people living with the condition can find it hard to concentrate. Narcolepsy affects around 30,000 people in the UK.

Cassie was diagnosed with Narcolepsy in 2014.

How were you diagnosed?

'I was diagnosed in April 2014, when I was 25 but I remember first experiencing symptoms at 16 when I started falling asleep in class.

'It took a long time to get a diagnosis as I found out I had Hodgkin’s Lymphoma (a type of cancer affecting the lymphatic system) when I was 21, and thought this might be the cause. I was in remission within a year and still falling asleep, but I didn’t start pursuing a diagnosis until it started to affect my working life.

'Because narcolepsy is relatively rare, the doctors were generally quite dismissive. I eventually saw a doctor who gave me an Epworth Sleepiness Test, after which I was referred for more tests.'

What are the symptoms to look out for?

'First and foremost, excessive sleepiness during the day. Not just 'I feel a bit tired', but being physically unable to stop yourself from falling asleep.

'This would happen to me in a warm room where I couldn’t get up to walk around (e.g. lectures), particularly after eating. It feels like you’ve gone without sleep for days - I would sleep after school or work for an hour, but it never made me feel any better. I got to the point where I could fall asleep anywhere.

'At work I would forget information after hearing it, or not take it in at all. Often I would go into autopilot and start answering with irrelevant information, and wasn’t able to write legibly.

'Then there’s cataplexy. Not everyone with narcolepsy experiences cataplexy, but it can make diagnosis easier as it’s a common symptom. Attacks involve a temporary muscle weakness, which can make you collapse. This can look like a fit as the face sometimes goes into spasm. My attacks only lasted a minute or so, but it can happen for longer, and sometimes in repeated episodes.

'I would also have very vivid dreams and would sometimes feel like I was awake and paralysed when I was sleeping.'

How is it treated?

'I take medication to stimulate the central nervous system, but it doesn’t address the cause of narcolepsy, only the symptoms. The treatment depends on the severity of the symptoms; your doctor will advise. Currently there is no cure.

'Other than medication, there are things you can do to manage it like taking regular naps and having a regular sleep routine.'

How does it affect your day-to-day life?

'Now that I’m being treated narcolepsy doesn’t affect me as much, but if I forget to take my tablets the symptoms come back straight away. At the weekend I’m not as punctual at taking my tablets, so my productivity and motivation drops.

'Even with medication, I have to be aware of my condition when driving. If I get any sense of being tired I know I need to pullover. I have a short-term licence as a result of the narcolepsy.

'If I’m out drinking the tablets don’t work as well. This can be a problem on the train as I’ll fall asleep more often than not, and I’ve missed my stop once or twice. Now I set an alarm on my phone and, where possible, don’t travel alone.

'When I don’t take my tablets it’s difficult to concentrate for long, which made lectures and lessons particularly hard. Whenever I’m not doing anything in particular, my body just wants to sleep and this makes people think you’re rude or ignorant, or that you think they’re boring.

'This was really hard before I was diagnosed because I couldn’t give them a proper explanation, even though I suspected I had narcolepsy for years.

'I’ve also previously felt like I’m sleeping my life away, which isn’t great.'

How would you sum up what Narcolepsy is to you?

'Embarrassing, and an inconvenience. It was a lot more embarrassing when my cataplexy was more severe, as I would collapse when I found something really funny or upsetting and appear to have a fit.

'Now that I have a diagnosis, I don’t feel like I have to back up my symptoms with an apology all the time, but having to explain myself every time I fall asleep is something I would rather be without.

'It’s better since I started medication, but I’m aware that I’m becoming tolerant to my tablets. Narcolepsy is much more widely recognised now, but there are lots of misconceptions around it and lots of people think I’m joking or exaggerating when I tell them I have it.'

BBC Advice factfiles are here to help young people with a broad range of issues. They're based on advice from medical professionals, government bodies, charities and other relevant groups. Follow the links for more advice from these organisations. The BBC is not responsible for the content of external websites.

This page was last updated on 26 Oct 2017