Samantha was 16 when she was diagnosed with narcolepsy, a chronic sleep disorder. She describes the symptoms and how it affects her daily life, and an expert discusses its causes and treatment.

Learn more about narcolepsy

Transcript of Narcolepsy

Well, I was about 16, so I'd just started doing my AS-levels.

The main thing was I just started falling asleep randomly.

When I was younger, I used to be able to fall asleep in the car easily,

but it was one of those things you don't notice or pay much attention to.

But that was the main thing, the sleep attacks.

Narcolepsy is a condition where the brain loses its ability... control the switch between being asleep and being awake.

All animals need to sleep.

But narcoleptic patients have lost the ability

to get into deep sleep and stay asleep.

The sleep's fragmented and broken up.

The consequence of that is the following day,

they're very, very tired and the pressure to sleep then builds up.

Phenomena normally associated with sleep and sleepiness

intrude into normal daytime activities.

The first symptoms I started to notice

was feeling a lot more tired than I usually do during the day

and falling asleep at random points.

Sleep paralysis was another one.

Waking up in the morning and not being able to move was quite disorientating

and kind of scary, to be honest.

There is a genetic predisposition to narcolepsy.

Certain genes have been identified

that are far more common in patients with narcolepsy.

That said, having those genes, you're more likely not to have narcolepsy

than to have it.

The incidence in the general population

is between one in 2,000 and one in 5,000,

but up to a third of us have these genes.

It happened pretty much anywhere.

It would happen while I was eating my dinner or in the shower

or at college in a lesson.

It did get to be a bit of a problem, really,

because I was falling asleep at school at lot more than, well, anyone would,

so I was missing out on a lot of work.

Treatments for narcolepsy have improved in recent years.

Traditionally, they centre around drugs to promote wakefulness, stimulants,

initially amphetamines and amphetamine-like drugs.

But more recently, drugs that are much safer and much less addictive

that also promote wakefulness are available.

I get a good night's sleep

and then take my tablets in the morning and another one in the afternoon.

I'm usually sleep attack-free throughout the day

which is a lot better than it used to be.

The support of my friends and family was a major factor in it.

Obviously, you do have bad days

where you think, "The world's against me," and everything like that.

But if you've got some really good people behind you,

then that makes a big difference.

Patients perhaps become better at living with it as they get older.

Sleep requirements change with age.

So, yes, the apparent severity of it can diminish with time.

But I think a major factor of that

is that patients just become better at dealing with it

and managing their own condition.

Well, I've just finished my A-levels so I'll be getting my results in August.

I'm planning to go to university in October.

So, big changes, but I've just got to adapt my lifestyle

to what I'm doing at that point, really.

Adaptation, with this condition, you kind of get used to it.

Change isn't necessarily bad, so you just get on with it.


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