drago

Do Narcoleptics Develop Cataplexy Later?

13 posts in this topic

I have had sleep paralysis since I was 3. I found out what it was called when I was 16.

I was diagnosed with narcolepsy when I was 22. I believe I have had it since I was around 21.

Is it possible to develop cataplexy later on? Or, is it something you generally have when you are diagnosed with narcolepsy?

Also, when my legs/arms fall asleep, it is incredibly painful when they re-awake. My friends think I am really weird when I am in pain when my legs wake up - one friend said "you look like an old person with a long-problematic knee injury" when I tried to get up with one of my legs falling asleep. Is this related?

Thanks,

drago

Share this post


Link to post
Share on other sites

hi,

As far as the pain goes - i get that as well - i don't think it would be much of a leap to suggest that it is related as there are lots of things in Narcolepsy that although are not a primary effect of the condition - they happen anyway.

as for the cataplexy - i dont think there is any answer - some people see their narcolepsy change for years - i know that i didn't have sleep paralysis when i was younger but do now so some times things can change. but some people just never get any cataplexy - does not mean that their narcolepsy is something else - it just means you don't get cataplexy.

i don't know if that makes you feel much better though

Sam

Share this post


Link to post
Share on other sites

I have cataplexy since ive been diagnosed with Narcolepsy. My cataplexic attacks differ sometimes. Most times when i am coming out of an attack, i lose all muscle control and start thrashing around. I have given myself concussions when noone was there to help me. now people in my life know to hold my head off the floor and not try andhold me down. I dont know if anyone else has this problem. sometimes with an attack, i just fall down and sleep, yet i can still hear everything, i just cant answer. My speech going is a big sign of an onset of an attack, other times my right side of my body gets heavy and i cant use it...dont know. i just feel so different and it scares me.

Share this post


Link to post
Share on other sites

I don't really have an answer for you, because I've heard yes and no on this. I wish I really knew. I think it is very possible to have this develop, esp if you have it lightly in the beginning. I have it lightly and I worry about the day that I might possibly start hitting the floor. I've done it when laughing, but I felt like had to sit down, not like I fell down. Maybe I would have if I didn't sit down? It was different than others seem to describe... in more or less ways.

So I don't know. I asked my doctor, but I don't think his answer was a definite of yes or no really. I wouldn't count it out as a possibility though.

Share this post


Link to post
Share on other sites

In my case it was yes. may many years later.

Share this post


Link to post
Share on other sites

I am the poster girl for that campaign. Did you see me? Oh, wait, no you couldn't have. I laid down right before the picture was taken.

Share this post


Link to post
Share on other sites
I am the poster girl for that campaign. Did you see me? Oh, wait, no you couldn't have. I laid down right before the picture was taken.

HA!!!!!!!!!

Share this post


Link to post
Share on other sites

I forgot to ansere this, sorry. C developed later for me, much later, and it's getting worse, although citalopram (celexa) helps a good bit.

I get sleep / tingling in fingers, hands, toes, feet. those are my normal spots, but it be other places. i've recently begun having feelings of being shocked in the palms of my hands and the bottoms of my feet and it does not feel good.

Share this post


Link to post
Share on other sites

I never remember having any issues with it until about 2 years ago. I have been diagnosed narcoleptic for about 18+ years. My "cataplexy"...if that is actually what it is comes on with pain....most times unexpected pain. It doesn't have to be intense...just has to catch me off guard. One time I twisted my neck and immediately "passed" out...but I think it was cataplexy now that I look back on it. The only other time I have had a real issue with it was after an orgasm...weak....heavy limbed...etc. Sometimes when I laugh I get an all over weakness. So my vote is YES...it can come on later in life. I am not medicated for my narcolepsy so that might have something to do with it....but I am not big on taking pills/medicine....so I prefer it this way. My dad and sister also have narcolepsy....however, they are medicated. I think my sister has had some cataplexy...but my dad has not. I also noticed it takes me an unusual amount of time to wake up for anesthetic. So maybe I am a "light weight"...or maybe it has something to do with narcolepsy. Who knows. Hope this helps you out;)

<h2 class="me">

</h2>

Share this post


Link to post
Share on other sites

I don't get it every time I sleep but have been video taped where my 5 year old (50+lbs) was Jumping up and down on me for 30 min .... woke up w/ NARLEY Ass bruises on my ribs back and chest...

lol Love my son :) uhmmm yeah, happens once or twice a month or if i screw w/ my sleep if i change it up to an hour... BOOM sleep threw 6 alarm clocks and a crap load of phone calls... wake up when my body is ready.. :(

makes me Hate to sleep...

any others?

Mike

(btw, ex-wife deleted it after showing me ... was mad :( lol

but no pain other then if some one thinks i need to be hit kicked or jumped on to wake me up...

***************************************************************************************************************************

N has its tolls in life... what has it taken from you?

Share this post


Link to post
Share on other sites

In the literature that I have read about 60% of people with N will develop cataplexy within 3-5 years of being diagnosed.... I don't have the article infront of me right now to tell you were you can read about this yourself but I will try to remember tomorrow while I am at work to look for it....

Share this post


Link to post
Share on other sites

I have had sleep paralysis since I was 3. I found out what it was called when I was 16.

I was diagnosed with narcolepsy when I was 22. I believe I have had it since I was around 21.

Is it possible to develop cataplexy later on? Or, is it something you generally have when you are diagnosed with narcolepsy?

Also, when my legs/arms fall asleep, it is incredibly painful when they re-awake. My friends think I am really weird when I am in pain when my legs wake up - one friend said "you look like an old person with a long-problematic knee injury" when I tried to get up with one of my legs falling asleep. Is this related?

Thanks,

drago

Share this post


Link to post
Share on other sites

My answer to that question is " Yes ". I am now 80 and I have had N since my late teens but the Cataplexy which was nonexistant at the beginning has now become progressively worse. I was planning to have a note put on my tombstone " No more Narcolepsy, thank God " ( Joke ). I find that I am my own worst problem, many a time it is what I say that will induce a Cataplexy attack but worse than that, I just need to think something to induce the big C. My children know me well by this time and as soon as the big C shows up they grab a chair for me and let me sit. For some peculiar reason sitting seems to make it go away. There is no record of any ancestors or decendants having this major problem.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now