Thursday, November 12, 2009

Narcolespy and me

Hi. My name is Sara and I'm a narcoleptic.  I was diagnosed this past August after years of medical tests trying to figure out why I'm so darned tired all of the time.  I finally had a light bulb moment and asked my doctor if I could get a sleep study and the result was a narcolepsy diagnosis.  It was such a relief to know that nothing life threatening was happening.  The only thing I ever knew of narcolepsy before my diagnosis was what I saw on TV sitcoms and I have found that everyone I have ever talked to about my narcolepsy has the same understanding of it.  So, here is all you ever need to know about narcolepsy brought to you by little old me. :)


A normal sleep cycle lasts 90 minutes and most people will have five or six sleep cycles each night.  There are two different kinds of sleep in each cycle: Non-REM (NREM) sleep and REM sleep.  Most people have a significant proportion of their sleep as NREM sleep early in the night and increase the amount of REM sleep the get with each sleep cycle.  The earliest REM sleep occurs in most people is usually 30 minutes.  A person with narcolepsy will enter the REM stage of sleep with little or no NREM sleep.  The average person will wake after completing each sleep cycle but won't remember it.  This means they wake every 90 or so minutes each night.  When I did my sleep study, it was shown that during one hour of the night, I woke 11 times.

There are four common symptoms of narcolepsy: cataplexy, sleep paralysis, hypnagogic hallucinations, and automatic behaviour.  Most people with narcolepsy don't have all the symptoms.  I have two - cataplexy and hypnagogic hallucinations.

Cataplexy is the sudden weakness of muscles. It is usually brought on by strong emotions but can occur at anytime.  The muscles weakness can be as mild as facial muscles relaxing or as sever as total collapse and everything in between.  Cataplexy can often look like a seizure.

Hypnagogic hallucinations occur during the moments between wakefulness and sleep when a person is falling asleep or just waking up or while dozing.  They are very vivid and lifelike and are often frightening.

 Sleep paralysis is when a person is unable to move or talk while waking.  This can last for a few seconds or a few minutes.

Automatic behaviour occurs when a person continues to perform tasks while in a sleep episode. When they wake from the episode, they will have no memory of performing those activities.

Interestingly enough, narcoleptics are often diagnosed with insomnia until it is discovered that they have narcolepsy.  The most common symptom of narcolepsy is excessive daytime sleepiness.  Narcoleptics will often have trouble falling asleep at night due to the disturbed sleep patterns.  Both of those occur in insomnia and so a misdiagnoses of insomnia is not uncommon.*

Narcolepsy  kind of goes in spurts.  It usually starts in the teen years but is not often thought to be a reason to seek treatment as it is brushed off as laziness.  It will get increasingly worse and then plateau for a few years and then get worse then plateau then get worse... As the narcolepsy increases in its severity, a person will experience more symptoms and will eventually seek treatment for them.

And me

I first saw my doctor about five years ago because I was just so darned tired all of the time.   I had always been someone who likes to nap and sleep, but the sleepiness was starting to interfere with my life.  My doctor put me through a bunch of blood tests over the next few years as I came in to see him.  Then I started getting really dizzy.  Dizziness isn't a symptom of narcolepsy but I seem to get dizzy when I'm tired.  More tests and more normal results.  Then I started having my cataplexy episodes and would trip a lot, drop things and even fall down the stairs.  Finally I requested a sleep study be done and voila!  Narcolepsy.

I am currently on a daytime stimulant to help me get through the day.  It helps me a lot in that, even though I really really want to sleep, I feel like I can get through the day without napping.  I am supposed to take a nap each morning and one each afternoon, but I laughed when I was told this as I am a stay at home mom with four kids and can't exactly just squeeze a nap in.  Actually, I don't really know anyone in the real world who can just up and nap during the day other than retired people.

I was called lazy when I was a teen but I really couldn't help it I was just so tired.  Even now, I feel like I'm lazy when I just have to lay down.  People over the age of three aren't supposed to need naps!  I'm not at the point where I will randomly fall asleep (like what is shown on sitcoms) but there are times where I can't physically resist having a nap.  I also have boughts of insomnia two or three times a year.  I am currently in the middle of one right now and it's just horrible.

I am supposed to stick to a very strict sleep routine and so I go to bed at 9:30 sharp and get up at 7:00 every day.  Even on the weekends.  I love sleeping in, but it really helps me to stick to the routine.  This kills me because I am just not a routine kind of person.  However, during my insomnia episodes, all of that is thrown out the window.  I will sleep an entire day so my body can catch up on sleep once the insomnia is over.

I am tired a lot.  There are times where I will refuse to drive because I don't think I can concentrate enought to be safe.  I rely on public transportation a lot so I don't have to drive (the environmental impact is the main reason, though).  When I am overly tired, I get stroke-like symptoms.  My head will tingle and half or all of my face will feel like it's been frozen - kind of like a local anaesthetic.  I also have a hard time focusing.  I know that's a common symptom of sleepiness but somehow this is different than what I experienced before my narcolepsy got worse.  I can't even describe it, it's just weird.

I hate having the hallucinations.  Some are really frightening and lifelike.  I had one where I hallucinated that my husband was on the floor dying right in front of me.  But, mostly, my hallucinations are just lifelike.  I can have several before I finally snap out of it.  Most of the time, I hallucinate about getting up and doing my morning routine so when it happens it feels like I have started five days, instead of just one.  I have been having these since my teens and I have taught myself to bite my tongue if I just can't tell when I am awake or asleep.  If I feel pain, I know I'm not hallucinating.  My biggest fear is that I will one day wet the bed when I hallucinate that I'm going to the bathroom.  So far so good on that one, I'm happy to say.

When I have a family get together and we're all laughing and goofing around, I will often drop things and trip over my feet.  This is always accompanied by a kind of freezing feeling in my brain.  That feeling is also there when I am experiencing extreme emotions that aren't so nice - like frustration, irritation and anger. I remember three specific occasions when I was frustrated beyond frustration with my kids and ended up falling down the stairs and one occasion when I was irritated beyond irritation with Lilly when we were walking and I ended up on my keister on the sidewalk.  These are all symptoms of cataplexy.  The more tired I am, the more likely I am to have a cataplexy episode.  Sometimes they're as simple as having a hard time typing.

When I am in a hypnagogic state (the state between sleep and wakefulness) I will often have involuntarily muscle movements.  This happens almost every night in my fingers.  But from time to time my jaw will involuntarily snap open and my head will snap forward.  Sometimes my arms or legs will move involuntarily.  I was worried when these things started happening and asked Kevin what seizures are like and ruled them out when they felt completely different than what he was descrining.

It is such a relief to have answers to all of the problems I had been having.  Everything that was making me worry that something was seriously wrong with my ended up being a symptom of narcolepsy.  But, I am really tired of being tired.

*What brought on this post is this piece of flair I found on Facebook:

Because not only is it possible, it's common for narcoleptics to have insomnia.

1 comment:

  1. This is soooooo going to sound sarcastic, but it isn't! That was really interesting. I've always wondered about narcolepsy & so this was fascinating!