Living with narcolepsy: I have to take four naps a day

Cristín McNeill has type 1 narcolepsy, a neurological disorder that causes excessive sleepiness, sleep paralysis and hallucinations, and sudden loss of muscle tone. She lives in Maynooth, Co Kildare with her husband and five-year-old son, and is the owner of Willow Bridal Studio

Cristín McNeill. Photo: Tony Gavin

As told to Katie Byrne

November 09 2020 06:00 PM

‘I started showing symptoms of narcolepsy in late March 2012, after my mother passed away very suddenly. She was 47 and she passed away in her sleep.

I was 23 at the time and her death was such a shock to my system that my body nearly went into shutdown mode. I had a bit of a cough already and I ended up with pneumonia. It eventually cleared but I was still experiencing fatigue and suffering from terrible insomnia, and I was nodding off without much prior warning.

I went to the GP and it was obviously chalked up to grief and depression, which I fully accepted. But then, three months later, I started to notice there was stuff happening to me that couldn’t be explained by grief, and I started experiencing symptoms of cataplexy, which is sudden loss of muscle tone in response to strong emotion.

The first time it happened I was in Tesco with my now-husband. I was leaning on the shopping trolley because I was tired and he made me laugh. All of a sudden my head started to fall. I couldn’t hold it up and my knees started to buckle. He said, ‘Oh my God, are you OK?’ but I couldn’t respond because my jaw wasn’t working properly. It was terrifying.

I was later diagnosed with type 1 narcolepsy, which means narcolepsy with cataplexy. I was quite stubborn and insisted on being referred to a specialist, so I was lucky to get diagnosed a few months after I started noticing the symptoms.

Emotions like laughter, anger, sadness, or even getting impassioned about a subject, can trigger a cataplexy attack. When I was younger, I’d be in a nightclub having fun but then someone would make me laugh and my best friend would have to hold me up.

It would always look like I was paralytic drunk. Sometimes a bouncer would come over and my friends had to explain that I had narcolepsy. Thankfully, they always gave me that time.

It’s a tough disease to live with and it can make you hold back emotionally. You start to fake laugh and be very measured with your feelings, and that has a huge long-term effect on you and on your mental health.

I was like that initially, but now I just let it go. Sometimes it takes me by surprise but the majority of the time there is someone there to hold me up. My family and friends are very good at spotting when it’s about to happen and they’ll run over. Sometimes, when my husband tells a joke and I don’t have an attack, he says, ‘Oh, you mustn’t have found it that funny then’!

Narcolepsy also causes sleepiness, which is like nothing I have ever experienced before. It gave me an understanding as to why they used to use sleep deprivation as a form of torture. Medically, they liken narcolepsy to someone with a normal sleep cycle staying awake for 72 hours straight, and then trying to lead a normal life.

I have to take about four naps a day, so I’m very lucky that my husband works and we can afford for me to stay at home and take care of our five-year-old son. It also means I can focus on the bridal shop that I recently opened.

I usually wake at about 6.30am. I get my son ready for school and we leave the house at about 8.30am. I go to the gym straight after I drop him off. It boosts my energy long-term, but I have to nap in my car for 20-40 minutes afterwards.

I then head home and have a shower and take another nap. Then I collect my son, feed him and have another nap with him in the bed beside me. He knows mammy has narcolepsy and he goes on the iPad. We set a timer on it that wakes me up and cuts his screen time off.

When my husband comes home from work, I start cooking dinner. He takes over the childcare and does the bath and bedtime story and I usually take a nap when he’s doing that.

Night-time is another kettle of fish. I’m wired but exhausted. It’s like insomnia and when I eventually fall asleep, I regularly experience hypnagogic and hypnopompic hallucinations. Dreams are very, very vivid and in the beginning I found it difficult to differentiate between dream life and real life

I was working as an office manager when I first started experiencing symptoms. I wasn’t able to get through the day without nodding off and I once nodded off in front of the managing director.

I had an awful lot on my plate and I was really not cutting the mustard. And as someone who is quite ambitious, it made me feel terrible about myself.

I thought I just needed a break from the corporate world so I started working as a private nanny. I had to stop when I found myself nodding off while caring for the children. I thought ‘this is not safe and this is not OK’.

There is no medication or treatment for narcolepsy. There’s just medications for other conditions that have side effects that sometimes help. Antidepressants can block the cataplexy, and they work quite well. Stimulants like Ritalin can help with the sleepiness.

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People with narcolepsy have to pay for their own medication and we shouldn’t have to because it is an incurable disease. It’s as prevalent as MS or Parkinson’s but there is no awareness, no education or recognition. And training for GPs seems to not be up to par at all.

I have the best support from my family. My husband has been my backbone, and his family too. We’ve been together since he was 15 and I was 17, so we’ve spent half our lives together.

But still, there is nobody out there with narcolepsy who is living in any way, shape or form.”

For information and support, see narcolepsyireland.org

Living with narcolepsy: I have to take four naps a day

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