I have had Cataplexy since I was 39 years old. Cataplexy is one of the main symptoms of Narcolepsy, I have excessive Daytime Sleepiness. The worse part of this condition is the Cataplexy. Cataplexy is usually triggered by strong emotions, I have severe Cataplexy which is usually triggered by laughter, or being surprised by loud noises, or someone calling your name, or loud bangs on the street. About 90% are triggered by laughter, what happens is there is complete muscle paralysis, you can not speak but you are aware of everything going on around you.Cataplexy can result in dropping of the jaw, slurring or complete loss of muscle tone. Cataplexy usually last up to about 5 minutes at a time. It makes working and social acitivities very difficult. I have found that the more tired I am, the more spells I have. At the very beginning of my illness I would have spells that would last over 2 hours, however the time frame may not be accurate when I am in a full blown Cataplexy spell. I was very lucky to be diagnosed quickly, some people it has taken up to twenty years to find out what they have.......They have no cure for it, nor are they aware of what causes it other than lower levels of hypocretin . It has changed my life drastically, I am unable to work, I need to sleep every 3 hours so that I do not have one spell after another...the big thing for me is sticking to a schedule. Because I am on medication my episodes usually only last now for 30 seconds to about two minutes. If something is really funny, and I have the Cataplexy as soon as I think of it again, then I have another one. I have had about 15 one after another, that gets frustrating when you just want to stand up and carry on your day....
Please read my days with Cataplexy post April 2010 to have a better understanding of my day.. Thank you.
I stand looking out into the distance over the water.
I lean upon the tree for support knowing that I have overdone it.
I sit upon the base of a fallen tree. my cane close at hand.
for when I am very tired, I need that darn thing to stand.
I was startled by a biker as he rode upon the trail behind where I was sitting.
He had said hello, my head slumped down, I had a Cataplexy spell.
Thank God that I was sitting or I could have fallen to the ground.
The passerby had probably thought me rude,
you see I can not speak or talk or even move.
In about two minutes I am back, just more tired than before.
I put both hands on side my head and look into my lap.
I know the only thing to get me through the day,
Is too lay down and have a nap.
Even though I have times of anger.
where I want to do more,
I am tired of spilling dishes, and food falling on the floor.
I look over to where the truck is parked,
I must make my way, one foot in front of the other,
The feet seem to get heavier and heavier as I continue on my way.
Come on dear Lord, please just help me get to the truck.
This time I knew that I would need some luck
Walking towards me I saw my husband coming over the hill.
I knew he would be wondering why I had not stayed still.
He gently put his hand in mine, and offered me support,
He told me of what he had seen while he was out walking.
We made our way slowly the rest of the way,
and he helped me in the truck.
He said that I was really tired,
and I commented that I could not remember when I was so exhausted.
We laughed, because I say that everyday,
And as we laughed my head slumped forward
and I had another Cataplexy spell.
I am not complaining,
I am just trying to explain
what a normal day is for me.
I am careful when I hold a child and always sit down,
I don't go on escalators, or swim, or go where the senses can be overstimulated.
No bright lights, no comedy clubs, no boats, no driving, even have to be careful
when I am cooking, or having a bath, or walking on the stairs. or talking to my friends, family
and neighbors, for you just never know what they will say, so I have chairs all over my yard,
so that I can be somewhat prepared for my day.
Note to self...there are always people much sicker than I and though we all try to appear as if we are okay,
Be kind, don't be scared to ask questions, let them know your there for them.
If some of the fear and anger can be replaced by educating others,
then it is best just to be there.
sometimes when people get sick, healthy people don't know what to say.
I don't think it is lack of interest, I think it can bring out some very
uncomfortable and awkward moments.
Because my life has changed so drastically, and our lifestyle has changed,
a lot of friends have stayed away,
Maybe it is because they can not stand to see me different.
I am okay with it, it is not like we can pick or choose .
I hope this has given you a little more insight
as to what Cataplexy is.
It is a symptom of Narcolepsy.
My cataplexy is considered very severe.
Medicine helps to keep it somewhat under control,
you just never know when an emotion will trigger it..
On that note, I am off to sleep.