Andrea Scott, 36
My Story: Misdiagnosis

I fell pregnant with my son at the age of 16 and left school with no qualifications. Two years later I began to experience the first symptoms of what I now know to be narcolepsy.

It started with an increase in sleepiness, but sleeping is a normal thing to do so I wasn’t too worried at the time. It was only when I had my first cataplexy attack that I realised something was wrong. One day I was laughing at something on the TV when I suddenly collapsed like a puppet that had had its strings cut and lay on the floor unable to move.

Trying not to make a big deal of it, I struggled on without medical help. However, over the next 12 months the sleepiness increased and the cataplexy attacks became more frequent. I found myself unable to stay awake while doing everyday activities like shopping, crossing the road or eating a meal and taking care of my son who was 3 at the time, became impossible.

Further anxiety was caused by increasing episodes of sleep paralysis accompanied by vivid hallucinations which were so terribly frightening that I would frequently wake up crying, petrified that I was going to die.

At this point I went to see my GP for help. Aged 20, I had been experiencing symptoms for two years and had spent most of this time apologising to people about my excessive tiredness. The attacks of cataplexy were embarrassing, frightening and concerned me greatly. But despite the hope that my GP could help he dismissed my symptoms as the result of the stress of being a single mother and I left feeling disappointed and very alone.

I changed doctors and over the next few years underwent various tests for diabetes and thyroid problems as well as neurological testing at Newcastle General Hospital. As a result I was diagnosed with a mild form of epilepsy. The medication I was given had horrendous side-effects and after a few months I stopped taking it preferring to cope without.

It wasn’t until several years later when I had moved to a different area and was registered with a different GP that I went back to seek medical help for the persisting symptoms. This time the doctor I saw really listened and suggested that I may be suffering from narcolepsy. He prescribed dexamphetamine immediately and referred me to a specialist neurologist who 8 years from the onset of symptoms made a definite diagnosis of narcolepsy with cataplexy.

Since then I’ve had ups and downs. Following diagnosis I’ve taken different medications some of which have helped more than others. I’ve started and then later had to abandon University and various jobs and I have never learnt to drive.

But, over the years I’ve learnt to have some control over the symptoms. I try not to allow myself to get into too much of an emotional state and I avoid stressful situations which I know might trigger a cataplexy attack. When I’m away from familiar surroundings, I’m constantly looking for safe places to be able to reach and sit down for a nap and I try not to sleep on my back as this makes sleep paralysis more likely.

Accepting narcolepsy and in doing so how it limits my life has been the biggest challenge that I have faced as a result of this illness. I’ve had to find a career that fits around my condition but I haven’t let this stop me. I’m qualified in NLP, Counselling, Crystal Therapy and Web Design, and I even worked for the Samaritans for a while. As I look back now aged 36, I am extremely proud of what I’ve achieved and will continue to grab every opportunity in life that I can.