Teen suffers from 'sleep attacks'
Living with an invisible illness
For years my son would sit in class and look spaced out. He would put a head set on to listen to music while the teacher stood talking or while he did his work.
He would get up and walk around, even walking out of class at times to go find a quiet corner so he could sleep. He would talk, either to himself, or to others.
If the class was slow and of little challenge, he would use these and other tactics to stay awake.
Time after time, he would get into trouble for talking, walking out of class, getting angry and frustrated, or simply going to sleep.
He was even stood down by one teacher/school director because he constantly fell asleep in her particular class.
When he was at intermediate school he would come home, curl up on a chair and sleep for as long as he could, until I had to wake him to get him to music, or dance.
In his early teens he would get laughed at (in a friendly way) by the dance teacher and others in his dance class because he would be yawning, or worse, fall sleep at the Ballet Barre, in the middle of class.
One day he came home from school to tell me about an exam he sat. He remembered the first five minutes of the exam, but then fell asleep, waking up just before the exam finished.
He was annoyed to realise he hadn't done the exam. Then he looked at the paper in front of him he was shocked to find he had done the exam, and passed. He has no memory of doing it, as he had done it in what is termed "Automatic Behaviour".
He made it to Year 13, but quit after the first term. He had had enough of teachers that didn't make the class interesting enough for him, weren't stimulating in their way of teaching or generally just "talked to us, not with us".
He hated sitting in classes like that. He would come out of these classes and not remember anything about the class.
He also never liked to partake in family fun. Laughing was something he didn't seem to like to do. On many occasions, when laughing, or having a really good time, he would mumble "stop it, I can't move".
If outside running around with his siblings and laughing he would sometimes collapse to the ground.
We got so used to his behaviours that we started to ignore them. Although always sleeping, he didn't appear depressed. He even went online himself once to see if he could have bipolar, or schizophrenia. He didn't feel he fit either of these conditions.
Things changed at the end of term one this year. Again he got into trouble for leaving the class to get something to eat, and bringing the food back into the class.
When I asked him why he did it, he said it was the only way to stay awake. He had felt sick, extremely sleepy, and was feeling agitated right in the pit of his stomach. This was typical of nearing the end of a school term.
Because of these feelings and his brain not always being able to hold on to impulse control (another symptom of extreme fatigue) he told the teacher what he perceived to be a home truth about her ability to teach the class. Of course he was stood down.
While he was stood down his father and I sat down with him to play a game of cards. He was winning and started laughing. We were now used to the fact he would drop his head to the table for a few seconds and ignored it as usual.
He did this a second time during the game. At the end of the game he went inside to do something on the computer.
Ten minutes later he came out and announced quite simply: "I have narcolepsy and cataplexy."
I wasn't shocked, just curious. I had heard of narcolepsy, sort of, but never cataplexy.
After my husband and I finished the card game I went inside to look up these two medical conditions.
It was like a light bulb going on. Everything could be explained, including the short term memory, the automatic behaviours, the appearance sometimes of looking like a zombie.
So an appointment was made with our doctor. Twelve weeks later after a Mean Sleep Latency Test (MSLT) we had a confirmed diagnosis of Narcolepsy Cataplexy Syndrome. He is a person with narcolepsy (PWN), but he is not called a narcoleptic.
I had no idea what this would mean going forward, and we are having to learn.
What we have found is that this is a very misunderstood condition. There is no cure, but there is treatment.
The treatment is not pleasant and it requires daily medication to force your brain to stay awake.
One of the main symptoms of narcolepsy is described as Excessive Daytime Sleepiness (EDS). This is different to being tired and refers to falling asleep at inappropriate times throughout the day and/or the experiencing of chronic pervasive sleepiness and fatigue.
Some call them sleep attacks.
Cataplexy is the most specific symptom in narcolepsy, and involves a temporary involuntary muscle weakness in response to emotions or the anticipation of emotion.
Narcolepsy can affect about one in 20,000 people, but is under diagnosed or misdiagnosed as being depression, or when cataplexy is involved they can be diagnosed with epilepsy.
These problems can be made worse by other sleep disturbances. We have found out that our son also has a sleep disturbance of Severe Periodic Limb Movement. This means his legs move for over a third of his night sleep. Although he is asleep, he is not resting as he should.
Having narcolepsy is best described as 72 hours of sleep deprivation then being expected to function like a normal person.
If anyone has tried to stay away for two days, they will find that even simple tasks can become hard, learning something new may be almost impossible and if you are expected to sit listening to a speaker on you will fall asleep, you can't stop yourself.
Going forward, our son will have to take medication for the narcolepsy to stay awake during the day and to help keep his brain focused. He should also take medication to relieve the worst of the cataplexy symptoms.
The medication for cataplexy is currently just antidepressants. This stops the sufferer getting the highs and lows of emotion, therefore, they don't collapse from them.
The common sides effects of these treatments is a high risk of periodic limb movement. Given he already has this, it will likely make it worse, and therefore it could cause a cycle of upping meds. More limb movement means less good sleep, less good sleep means more EDS, more EDS means more meds. You see the circle.
The drugs used for these conditions are not designed for them, they are a these-sort-of-work-so-they-will-do treatment.
It is only in the last few years that the realisation is that it could be an auto immune disorder where the body attacked the chemicals in the brain that regulate the sleep/wake cycle.
The worst thing is that employers are not interested in taking on someone who has had problems at school or if the employer thinks it is even possible they may fall asleep if the job is boring. If he has a cataplectic attack because he is joining in having fun at work, is there an OSH risk?
He couldn't work as a labourer on a building site, or in the circus, or even on the floor of a factory, where the work is repetitive and not stimulating. What employer will put a couch/chair somewhere for him to slip off and have a sleep for an hour at lunch time, just to stay awake for the afternoon?
The medication to stay awake is no guarantee, it is a "let's hope".
Life for this 17-year-old is not looking quite as rosy as it did when he was well above average in the sciences and maths subjects at school.
Because there is so much emphasis on English, which is an extremely difficult subject for a PWN he has not passed this to level required for entry to university, or to even do a diploma.
He has found that the subjects he took at school (physics, chemistry, music, etc) are of no use to him when he probably can't get into the career he wanted to do.
He is now having to try and re-plan is whole future, taking into account the limitations this condition puts on him. But to look at him, you would never know he was not like you or me.
If any of this sounds familiar, don't say to your doctor: "I am always tired," instead say "I am always sleepy," because there is a difference between being tired (which we all suffer if we have a late night) and being unable to stay awake suddenly or at inappropriate times.
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