42 replies to this topic

[Damian]

its okay for some, I have to refain from laughter,crying even down to surprise because these all send me into a cataplexy where I will totally collapse in a heap. When it happens when your out in the supermarket and you collapse and you can see the looks you get. Then when you at the checkout you can still here people like "thats him who was on the floor". I have no issue with my problem I got it and until its controlled it'll all keep happening. I feel for my family members who are with me when I have these cataplexy attacks

[Damian]

[
CATAPLEXY

I had a bad experience the other day been talking in dining room to some family, do you know them solid wooden chairs that have high backs? I was stood next to one felt a cataplexy coming on tried to move away ended up with my stomach on the top of the high back and my head was just of the seat and legs were of the floor luckly my brother in law and my dad grabbed me as the chair started to fall back with my weight. it f****** hurt got bruised stomach
and felt sick once I come out on my attack.

[MEColumbo]

[
CATAPLEXY

I had a bad experience the other day been talking in dining room to some family, do you know them solid wooden chairs that have high backs? I was stood next to one felt a cataplexy coming on tried to move away ended up with my stomach on the top of the high back and my head was just of the seat and legs were of the floor luckly my brother in law and my dad grabbed me as the chair started to fall back with my weight. it f****** hurt got bruised stomach
and felt sick once I come out on my attack.

Damian, that happened to me before. The attack was so violent that it busted some of those cappilaries in my my eyes, and the whites of my eyes were the color of blood for almost 2 weeks.

[doscious12]

My cataplexy ususally occurs when i am very tired.Laughter and when a horror movies music start to play usually what triggers it.

[bagpuss]

I USE TO ONLY GET CAT ATTACKS FROM LAUGHTER.NOW I GET THEM FROM HORROR AS WELL .FOR SOME REASON THEY ARE GETTING WORSE. IVE GOT A CLOSE FRIEND THAT IF SHES OUT AND ABOUT WITH ME AND I HAVE A BAD ONE,SHE EITHER LAUGHS WITH ME AND SITS ON THE FLOOR OR GETS ON HER SOAP BOX AND SAYS TO ON LOOKERS HAVE YOU NEVER HEARD OF CATAPLEXY ???????? AND STARTS HANDING OUT LEAFLETS.BLESS HER .IT MAKES ME SMILE EVERY TIME

[Lais02]

I USE TO ONLY GET CAT ATTACKS FROM LAUGHTER.NOW I GET THEM FROM HORROR AS WELL .FOR SOME REASON THEY ARE GETTING WORSE. IVE GOT A CLOSE FRIEND THAT IF SHES OUT AND ABOUT WITH ME AND I HAVE A BAD ONE,SHE EITHER LAUGHS WITH ME AND SITS ON THE FLOOR OR GETS ON HER SOAP BOX AND SAYS TO ON LOOKERS HAVE YOU NEVER HEARD OF CATAPLEXY ???????? AND STARTS HANDING OUT LEAFLETS.BLESS HER .IT MAKES ME SMILE EVERY TIME

That's great! I wish my friends were that good lol. My friends act like N is a terrible secret of mine or something like that... so they don't exactly hand out fliers lol

[MASHEDGETSMASH]

HI everyone,


Q. How comes i don't have cataplexy when i'm having sexual intercourse ?

Q. Does anyone else ?

sorry im so blunt.

[Damian]

HI everyone,


Q. How comes i don't have cataplexy when i'm having sexual intercourse ?

Q. Does anyone else ?

sorry im so blunt.

I made a post about this try looking in the forum for this topic already had a couple of replies

[bagpuss]

That's great! I wish my friends were that good lol. My friends act like N is a terrible secret of mine or something like that... so they don't exactly hand out fliers lol

MY FRIENDS ARENT GOOD AT KEEPING SECRETS.LOL MY ELDEST SON IS LIKE THAT.HE IS COMING ROUND SLOWLY. I SHOWED MY FRIEND WHAT YOUR SAID AND O BOY.........AFTER SHE GOT OFF HER SAOP BOX ABOUT FRIENDSHIP AND HOW LUCKY I AM LOL YES I KNOW THAT. SHE SAYS SOMETIMES IT HELPS HER IF THE ON LOOKERS ARE SEXY MEN .

[Marcianna]

[
CATAPLEXY

I had a bad experience the other day been talking in dining room to some family, do you know them solid wooden chairs that have high backs? I was stood next to one felt a cataplexy coming on tried to move away ended up with my stomach on the top of the high back and my head was just of the seat and legs were of the floor luckly my brother in law and my dad grabbed me as the chair started to fall back with my weight. it f****** hurt got bruised stomach
and felt sick once I come out on my attack.

Oh man! Your about as dangerous as me! Here is my top five worst cataplexic attacks:

1. falling and landing on a lawnmower. (thank god it wasn't running!)
2. falling and busting a statue with my head.
3. falling while walking down the street into oncoming traffic.
4. falling and denting some ones car in the parking lot with my head...( yeah I got a thick skull so what?)
5. falling all over the place barely able to walk for a good long time during two diffrent funerals. Both times I was accused of being drunk and disrespectful. oh yeah, I'm a drama queen too. I almost forgot.

We should get together and tell each other bad jokes sometime. we can record it an put it on You tube. Maybe we will get a sponser and have our own show! Stu can be our special guest. It would be great fun! Cuz sometimes you just gotta learn to laugh at yourself. Because Noone is laughing with you until you do. they're just laughing at you.

[Damian]

Oh man! Your about as dangerous as me! Here is my top five worst cataplexic attacks:

1. falling and landing on a lawnmower. (thank god it wasn't running!)
2. falling and busting a statue with my head.
3. falling while walking down the street into oncoming traffic.
4. falling and denting some ones car in the parking lot with my head...( yeah I got a thick skull so what?)
5. falling all over the place barely able to walk for a good long time during two diffrent funerals. Both times I was accused of being drunk and disrespectful. oh yeah, I'm a drama queen too. I almost forgot.

We should get together and tell each other bad jokes sometime. we can record it an put it on You tube. Maybe we will get a sponser and have our own show! Stu can be our special guest. It would be great fun! Cuz sometimes you just gotta learn to laugh at yourself. Because Noone is laughing with you until you do. they're just laughing at you.

You are mad wouldn't even try to use a lawn mower,heres one for you to read..

Im 6ft and way 13 st 10lb.
Walking up stairs at home, 18 steps in total, got two from the top, fell down backwards knock myself out, shattered three teeth,whiplash on neck (collar needed), pulled shoulder badly bruised ribs and just top of left arm numourous dints and bruising to my head. Came round spitting teeth and blood then of to A&E.

[Marcianna]

You are mad wouldn't even try to use a lawn mower,heres one for you to read..

Im 6ft and way 13 st 10lb.
Walking up stairs at home, 18 steps in total, got two from the top, fell down backwards knock myself out, shattered three teeth,whiplash on neck (collar needed), pulled shoulder badly bruised ribs and just top of left arm numourous dints and bruising to my head. Came round spitting teeth and blood then of to A&E.

AGH! Ok that is not funny! Sometimes I wish that we could go through this unconscious. I fell down stairs only once but it wasnt to bad... but I did move to a ground level house right after that. I knew it was likely to happen again and I might not be so lucky next time. oh I am sorry I wasn't more specific before, I have never actually used a lawn mower. I was just standing beside one at a friends house. The only serious injury, (thank goodness) that I have gotten was a broken foot. I have been really lucky.

And I know this sounds really stupid, but it kinda helps in my situation anyway, that I am a girl. There is always some guy friend of mine around ready to be a hero and jump in and catch me. It used to annoy me, but I realize now alot of those situations could have been alot worse. Especially landing in the road. That could have been messy.


On another note has anyone ever had paramedics called on them?
When that happened to me, whoever called said I was having a seizure. And when the para's got there they got mad and left.
They said I was faking it. Are they even allowed to do that? I mean they are not doctors so can they make a call like that?

[too exhausted]

Cataplexy seems to have been in the media (UK) a lot recently with one lady being interviewed on tv and in the newspapers. Her is the her story.



No laughing matterEvery time Kay Underwood finds something funny her muscles become paralysed and she collapses. She tells Kate Hilpern about living with cataplexyKate Hilpern
The Guardian, Tuesday August 19 2008
Article history

New medication has eased Kay Underwood's symptoms, but there are no cures. Photograph: Fabio de Paola

As far as party tricks go, Kay Underwood's is hard to beat. At least that's how many of her friends see it. Frequently introduced as the woman who "collapses when she laughs", this 20-year-old architecture student has cataplexy, which causes an abrupt relaxation of all her muscles the moment she begins to giggle.

"Sometimes I only have to think about something funny to collapse - and sometimes it happens again just as I'm coming round because I think about the joke that made me fall over in the first place," she says. "Once I tried to calculate how often it happened in one day, but I lost count at 40."

Like all people with cataplexy, Underwood wasn't born with these symptoms. "It first happened one day shortly after I went to university. I was sitting in my kitchen, my flatmate made me laugh and I hit the floor. I could hear and see everything going on, but I couldn't move a muscle."

Cataplexy is not a condition in its own right. After excessive daytime sleepiness, which Underwood has also experienced since she was 15, it is the second most common symptom of narcolepsy (which is caused by the lack of a neurotransmitter called hypocretin, which controls wakefulness and sleep). Its causes are as yet unknown. Some believe it may be genetic, while others think it could be the result of an auto-immune disorder or brain damage caused by a severe infection. There is also no known cure for this lifelong illness, which affects around 20,000 people in the UK. It is estimated that 60-90% of people with narcolepsy also have cataplexy.

Laughter is the most common trigger but some people have cataplexic attacks when they feel other strong emotions - anger, excitement, embarrassment, fear, or surprise, for example. There are even people who collapse when they think about sex or say, "I love you." "I had one patient who it happened to whenever he felt smug," says Dr Andrew Hall, a consultant in anaesthesia, intensive care and sleep disorders at Leicester General Hospital, where Underwood is being treated.

"If anger set me off, I'd be fine," says Underwood. "I'm always laughing. Sometimes my mum and I don't even have to be talking about something funny to laugh."

No sooner have we sat down in Underwood's parents' garden in Leicestershire than the two of them chuckle about the biscuits we're eating. It's difficult to anticipate when comedy will strike and for the past two years, Underwood has risked hurting herself every time it does - she once almost drowned in a swimming pool. She has developed a fear of escalators and can't walk down stairs without someone in front of her.

"It's always at the forefront of your mind because you constantly have to assess an area for danger. Is there glass around? Any sharp corners? Even having a cup of tea in your hand can be dangerous," she says. "I had to stop cycling and driving. At one time, I thought I might not be able to have a family because what kind of a mother would I be, collapsing all the time? Then there's the embarrassment factor. All of a sudden, you can fall into your dinner or your drink starts pouring straight out of your mouth."

However, Underwood does not collapse over the biscuit joke. "I'm on new medication that started working three months ago," she explains. Having taken it for a year, and aware that there are no long-term solutions, she won't disclose the name of the drug.

In the United States and the rest of Europe sodium oxybate, which replicates the activity of hypocretin, is a first-line treatment for cataplexy. Few patients receive it in the UK because it costs around £9,000 per year.

More commonly prescribed here are anti-depressants which can help to alleviate excessive tiredness, which is thought to decrease attacks. However for many, including Underwood, they not only fail to work but cause a range of unpleasant side-effects.

"I'm constantly wrestling with the difficulty of getting sodium oxybate prescribed for patients," says Adam Zeman, professor of cognitive and behavioural neurology at Peninsula Medical School in Exeter. "There's an incredibly elaborate procedure for every patient and the prescribing boards stall as long as they can every time. I think there's a feeling that cataplexy is a condition that doesn't need a pricey drug."

"A lot of people don't take it seriously," says Underwood. "It's not like you're in pain with it and because it happens when you laugh, people think it's funny."

Underwood adds that she had enough trouble getting her cataplexy diagnosed at all. "The first doctor said it was anxiety and the second said it was my blood-sugar levels.

The third one sent me to a specialist, but only because I'd found out what it was myself by looking up my symptoms on the internet."

The average time between first experiencing symptoms and being diagnosed is six years. Zeman believes that this is partly because patients with mild symptoms may assume that everyone gets weak when they laugh and partly because doctors are poorly educated about narcolepsy and cataplexy.

"It's almost certainly under-recognised and it usually tends to get picked up first by the patient themselves rather than a doctor. I see so many people who have been dismissed time and time again. It can be a disabling condition. One study found that its effects can be at least as great as epilepsy. Some people try to keep their emotions at bay, which can affect relationships and the ability to socialise, for example, and others find it difficult to get a job."

Many people with narcolepsy experience other symptoms besides cataplexy - notably automatic behaviour (being unaware of what you are doing), sleep paralysis (the inability to move when waking up or falling asleep) and hallucinations. "You can think you're going mad," says Underwood, whose hallucinations have included seeing chairs lift off the ground, pirates entering the house and a bomb being dropped through the letterbox. "I've had two patients who were sent to a psychiatrist and wrongly diagnosed with psychosis," says Zenobia Zaiwalla, a consultant neurophysiologist at John Radcliffe Hospital, Oxford.

For Underwood, a friend caused her longest and scariest cataplexic episode, tickling her in order to bring on the famous "party trick".

"I know it's just ignorance," she says. "One day I hope to set up a charity to raise awareness and money for further research".




Also I found this interesting web page about how the brain works with cataplexy.

Paralysed by humour? Don't make me laugh
Yesterday the BBC reported the case of Kay Underwood, a 20-year-old student who can't help collapsing if she's made to laugh. Underwood says her friends think she's putting it on, but in fact she has cataplexy. This is a condition that affects a minority of patients with narcolepsy (a tendency to fall asleep in the day). It involves the muscles weakening in response to certain emotional triggers, most often humour. Other documented cases include a man who experienced weakness and trembling when it was his turn during a game of draughts.

Fortunately for those curious to know more about cataplexy, two open-access articles have been published this year, both of which report the results of brain scans taken of patients with the condition while they were exposed to cartoons or funny pictures.

Their findings are slightly contradictory, in that the first by Sophie Schwartz and colleagues found decreased activity in the hypothalamus of the patients compared with controls, whereas the second paper by Allan Reiss' team found increased activity in this brain region.

However, both papers agree that the condition appears to reflect abnormally intense activity in at least some of the brain's emotion network when exposed to humour (for example both studies found exaggerated activation of the amygdala and nucleus accumbens).

The paper by Allan Reiss made several other notable observations: (1) the patients with cataplexy reported finding the cartoons significantly less funny than the controls. This may reflect their attempt to avoid a cataplectic attack by stifling their emotional response to the cartoons. (2) The patients showed greater activity in a region on the right-hand side of the front of the brain, known to be involved in inhibitory control - again suggesting some kind of damping mechanism aiming to keep a lid on the over-reaction of the brain's emotional areas. (3) The researchers managed to grab a brain scan of one patient caught in the midst of a full-blown cataplectic attack. This revealed significantly reduced activity in his hypothalamus. Based on this, the researchers said "massive suppression of hypothalamic activity may be an essential component of a cascade of neural events leading to muscle atonia" (i.e. the weakening that leads Kay Underwood to collapse).

In other words, it sounds like people with cataplexy have an exaggerated emotional response and that sometimes their brains overcompensate for this with such a powerful inhibitory mechanism that it literally leaves them flattened.




This other web page explains why we are in pain with cataplexy.

http://www.scienceda...20204075039.htm

I have constant pain all over my body and when I am stressed the pain puts me to bed. If I try walking when the pain is at its worse my hip/groin/legs/ will give way resulting in three broken bones so far. It is different to a cataplexy attack because I can feel my body going weak first with a C attack before I slide down. When I have been quite active in the day then that night my arms/legs feel like they are pounding and are going to explode. My skin feels swollen and itchy and I feel sick and then can't sleep. So I will be in bed the whole of the next day exhausted and weak. Does anyone else get constant pian all over their body and the feeling of weakness? Or am I like the alien my oestopath thinks that I am.

[dogdreams]

What exactly is my brain doing when I'm
laughing and about to fall?

-Stu

Your brain thinks its asleep and doesn't want your body to act out what it thinks are dreams when, in reality, you are awake.

To oversimplify it to the extreme:
Whenever you have an emotion, there are 2 paths that it can take. When you are awake, you simply feel that emotion and all motor control continues unhindered so you can walk, talk, laugh, cry, and run screaming from predators.

When you are asleep, however, that emotion trigger takes a different path. It goes a separate route, turns on one part of your brain, turns off another and, in doing so, inhibits any activation of the skeletal muscles before the signal even gets to your spinal chord. It's so complete, you don't even have reflexes. (i.e.: if someone taps your knee, nothing happens.)

In Narcolepsy with Cataplexy, this gets confused because the neurotransmitter system in the Hypothalmus involved in regulating this awake/dreaming 'gate' is damaged, and it sends the signal to the wrong place.

Thus, laughing at the guy who's running screaming from the predator suddenly makes you an easy snack.

[Bobbie]

I am confused about Cataplexy also. I am newly diagnosed. When I get suddenly frightened, my body tightens up and will not move for a few seconds, and a terrible "electric" shock runs through my body, it is frightening and very painful. But I have never fallen down. When I unexpectedly ran into my first love (who I'll never get over), My knees went weak, I stopped breathing, and started to loose my balance, but my sweet husband caught me. I also uncontrolably burst into tears. My Doctor says you can have emotional cataplexy, which I have never heard of before. She said an emotional cataplectic (sp?) attack is an uncontrolable outburst of emotions. Anyone else experienced this or heard of it? Do any of my experiences sound like cataplexy?

Thanks for your help!

Your doctor doesn't understand that it is EMOTIONS that trigger Cataplexy, so her labeling a cataplexy attack as an emotional cataplectic attack is a poor explanation. A Cataplexy attack is exactly that which can be triggered by any variety of "emotions" including confrontations, competition, swatting a fly, disappointments, lkkkkkkkkkkkkkkkkkkkkkkkkkkkkk, oops, fell asleep. Seeing someone you haven't seen for a while can easily trigger an attack whether is was unexpected or not. I am 66 yrs. old and have had Narcolepsy since I was 13. It began with Cataplexy symptoms first. I have never had a painful electric shock from a Cataplexy attack, but I have experienced (without pain) feeling electrical pulsating sensations in my head as I feel my brain drifting into sleep. My experiences are many and much too lengthy for this forum. Imapramine has helped me more than any other medication I have ever taken. Ask your doctor to get you some....asap.

[hathor]

i have had cataplexy for as long as i can remember. i never laughed out as a kid in fact i didnt laugh until i was nearly in my 20's!!!! the things that trigger my cataplexy is laughter, anger, amusement etc. if im tired and im trying to talk to people especially if im tired i feel like im fighting to stay awake and stop the shaking. if i let into the cataplexy i will fall down. if its really bad i just have to take a big breath walk away and go find a place to sleep!!! i have had medication i used to get ritalin and clomipramine but the ritalin made me nasty and bad tempered. the last medication is prozac and provigil which i cant take because i cant sleep at night when im on it!! has any body else had that kind of problem? because of not sleeping at nite i wake up late in the morning and so its to late to take my pills. its just a big circle!!

[Mike M]

hathor,

My problem with Provigil was anxiety. Were you taking it right away in the morning and still struggling to sleep? If so, bummer. One thing to try might be Xyrem. I know that it is tough to get in the UK, but some folks have had success. The drug is short acting and powerful so PWNs tend to get a much better sleep with it. Good luck!

[ulooktired]

I'm new to meds. I've had cataplexy for years and had no idea what was going on- numb legs, total body weakness, slurred speech- and then last september it became a daily affair and on and off all day and very severe shock-like episodes. You see I'm a hospice nurse so i deal with a lot of emotions and stress and drive a lot. I have become an actress at hiding these episodes and I know the best places to hide.
So today I felt reborn when I started provigil and had a normal day and no cataplexy. I am so thrilled! I took 200mg at 7:30 am and 200mg at 2pm as advised by my sleep doc if I started to feel bad. At 1:30 I started to get back into the fog I know all to well and was terrified of having an attack. My attacks are really bad when I'm playingwith my son.So sad, but he's so much happier today-he can tell.
Anyway, anyone else taking provigil for cataplexy?? I am worried about not getting to sleep because I was unable to take a nap today.

[dogdreams]

Provigil did nothing to help my C. It only made me feel more awake.

[Bobbie]

EMOTIONAL CATAPLEXY: is no different than Cataplexy....because basically it is a response by your brain to an emotion. Simply put, the definition of Cataplexy is: An emotion triggers your brain to think that you are asleep and dreaming so it sends signals to your muscles to do the same thing they do when you are asleep and dreaming....loose any control (loss of muscle tone). I don't know why Wikapedia and other informative web sites can't just make a simple explanation that anyone can understand. I have had severe Cataplexy/Narcolepsy for 56 years and everyone I have given the above description to has not had any trouble understanding it.