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Cataplexy Symptoms


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#1 jsg1206

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Posted 01 January 2013 - 08:56 PM

I was "officially" diagnosed with Narcolepsy / IH in 2005 after decades of struggle.... I have always proclaimed that I do not have any symptoms of cataplexy, but maybe I don't fully understand the different levels of cataplexy.... Here is my question for anyone out there with cataplexy (I tried Xyrem years ago, but it was horrible stuff, felt like a depressed zombie in the morning, could not function), when I get really stressed / anxious (ex) was yesterday (I am making a sudden career change that will happen by this Friday - basically forced to make the change) - this has been and is extremely stressful. I notice in the morning when I am especially stressed thinking about it, my legs get wobbly / shaking, feel like I am off balance........ might just be from anxiety, but would love to hear from others that have diagnosed cataplexy. thanks Happy New Year to all



#2 SleepySiren

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Posted 02 January 2013 - 02:21 PM

I was "officially" diagnosed with Narcolepsy / IH in 2005 after decades of struggle.... I have always proclaimed that I do not have any symptoms of cataplexy, but maybe I don't fully understand the different levels of cataplexy.... Here is my question for anyone out there with cataplexy (I tried Xyrem years ago, but it was horrible stuff, felt like a depressed zombie in the morning, could not function), when I get really stressed / anxious (ex) was yesterday (I am making a sudden career change that will happen by this Friday - basically forced to make the change) - this has been and is extremely stressful. I notice in the morning when I am especially stressed thinking about it, my legs get wobbly / shaking, feel like I am off balance........ might just be from anxiety, but would love to hear from others that have diagnosed cataplexy. thanks Happy New Year to all



My eyes start twitching when i get really stressed or agitated. My knees get wobbly when I am happy or having a good time.When I am excited with anticipation.

#3 SleepySiren

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Posted 02 January 2013 - 02:21 PM

My eyes start twitching when i get really stressed or agitated. My knees get wobbly when I am happy or having a good time.When I am excited with anticipation.


But I don't think I have cataplexy

#4 wisher

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Posted 10 January 2013 - 04:16 PM

It could be cataplexy, although I'm not sure since one of the words you used to describe it was "shaking". At least, for me, when cataplexy hits, it's a weakness - not a shaking. I pretty much lose control of whatever muscles are affected (in varies in strength, and can include my arms, legs, just my knees, neck, etc.). It feels like my muscles suddenly turn to jelly.

 

I'm not a doctor, and everyone's cataplexy experiences are different, so I can't say for sure either way. What I can suggest, though, is that you just keep an eye on it. See if it happens during any other particularly emotional moments?



#5 Krickett

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Posted 22 January 2013 - 05:59 PM

Ive discovered that when i am really pissed off suddenly (thankfully always seems to be when im sitting) my hands an feet are tingly [ins and needles like they are asleep and my knees feel like jello.....onset cata?



#6 workingmomof2

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Posted 02 February 2013 - 04:37 PM

I was diagnosed with narcolepsy with cataplexy just this past August 2012. I also have syncope which I had 3 separate tilt table tests for and went to the syncope center at the Cleveland Clinic in Ohio. The syncope diagnoses came 3 years ago. Prior to that I ws diagnosed with epilepsy but that got ruled out with a 5 day eeg in the hospital. So, the N diagnoses has been 10 years coming. I have pinpointed that stress and anger are my biggest triggers. I can feel the attacks coming. My eyes feel heavy, I feel "out of it", sometimes I get heart palps, and I get dizzy. I know when I have to lay down. Then I can't move or talk but my brain is completely awake as I can hear and feel everything. This lasts sometimes up to 30 minutes. My eyes roll in my head and on occasion my head twitches very subtly. My hands and feet are freezing and tingly like they are asleep or not getting blood? When I "come to" I am very tired and sleep a few hours. Sometimes I am better after the sleep sometimes it takes days. 



#7 Megssosleepy

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Posted 11 February 2013 - 03:36 PM

Ive discovered that when i am really pissed off suddenly (thankfully always seems to be when im sitting) my hands an feet are tingly [ins and needles like they are asleep and my knees feel like jello.....onset cata?

 

The other night, a car didnt stop at a stop sign and literally pulled out in front of me I was scared then very angry...  my legs felt very warm and fuzzy... like light pins and needles with a bit of warm jello mixed in.  For me that was Cataplexy. If I wasnt on Xyrem I would have lost my legs!



#8 Krickett

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Posted 11 February 2013 - 06:04 PM

The other night, a car didnt stop at a stop sign and literally pulled out in front of me I was scared then very angry...  my legs felt very warm and fuzzy... like light pins and needles with a bit of warm jello mixed in.  For me that was Cataplexy. If I wasnt on Xyrem I would have lost my legs!

So definitely Cataplexy then huh? I am on Xyrem as well



#9 SnoozleBear

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Posted 15 March 2013 - 08:48 PM

I havent had any diagnosis yet, just have had long term sleep problems, and hopefully will be having a sleep study done soon. Just reading through various threads on here, and can relate to a lot of what people are saying. I've never had an instance where I've collapsed or anything that severe, but I find when I am extremely nervous or stressed, I get spacey, heavy, weak and dizzy. usually I am sitting down, but my legs feel very tingly and 'jello' / unstable when I do stand. My eye sight keeps moving in and out of focus and occasionally my eye will twitch. Also when stressed or nervous, I have a ringing/buzzing in my ears, as well as feeling of pressure or blocked-ness in my ear drums, and its like someone has turned the volume down a little for a few minutes. it usually happens along with the other symptoms (though not sure if this one is related? probably something to do with blood pressure). I feel exhausted after this happens, and usually need to get home to sleep. If I dont fall asleep on the train on the way home first haha!

 

When I laugh, (usually only if I laugh hard) I will sometimes have jello legs and (embarrassingly) may loose control of my bladder, just a little.

Also (probably just general unfitness) but if I go for a jog, or exert myself too much, again - jello legs and my knees will buckle 

Lastly when I walk around or go out - sometimes if I feel very exhausted and will stumble and trip over my own feet, I will feel heavy all over and walk very slowly - and I tend to be less aware of my surroundings - walking into things, accidentally bumping into people and hands suddenly drop things a lot.

 

Can anyone relate to any of this? could some of this possibly be mild cataplexy? 



#10 Krickett

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Posted 07 September 2013 - 06:26 PM

I can relate to just bout all of it.. and yeah its documented that physical exertion can cause cataplexy... you sound pretty textbook to me.. or at least you sound almost exactly like me.. 



#11 3.8jake

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Posted 29 October 2013 - 11:32 PM

When I was 10 my one and only nightmare that I remember ever having to this day caused me to wake up and was 100% paralyzed (except for eye movement) for what seemed like an hour before I finally was able to scream for my parents, about 99% paralyzed, but I was able to move the upper half of my body by the time my Dad came to the room.  I remember my legs and arms feeling like spiders/ants crawling over them after I "woke up".   A hand full of times when say a deer ran out in front of me while driving, or spinning out while auto-crossing,  triggers my left leg to loose its strength / unable to hold steady force (I'd pump the clutch with my left leg despite my best effort to keep it all the way down).   High level's of anger triggers leg buckling/shakes. (always my left side???) Never been diagnosed for cataplexy....I'm just assuming at this point.



#12 Asksuzan

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Posted 05 November 2013 - 01:37 AM

Does anyone have balance issues? I don't loose complete control I just stumble around like a drunk.

Is this a cataleptic sign? Or am I just really clumsy?

#13 Hank

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Posted 05 November 2013 - 08:10 PM

Does anyone have balance issues? I don't loose complete control I just stumble around like a drunk.

Is this a cataleptic sign? Or am I just really clumsy?

If you have N and you stumble like a drunk without drinking, it sounds like a big red flag for cataplexy.

 

I was once pulled over for a minor speeding ticket and wound up having my trunk searched because my speech was slurred and no alcohol on my breath. I seemed so suspicious with no diagnosis to explain it. Now I know.



#14 lyssy813

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Posted 13 November 2013 - 12:23 PM

I don't quite understand what Cataplexy is since there are so many different variances. It just makes no sense to me at all.  I was convinced I did not have Cataplexy but when speaking with the sleep specialist, she asked if I ever have strange feelings in my muscles or weakness, etc.  The only thing I can think of is when I'm caught off guard, I get this feeling for only a second and it feels like going down the hill of a roller coaster.  I've always thought that was a normal reaction to have; that it was nerves.  The sleep specialist said it is Cataplexy.   

 

However, since dx, I've definitely been more aware of the symptoms of N (I'd had since I was so young, I thought it was all normal) and I have noticed if I eat a heavy meal, my arms feel weak. There's no motor impairment or anything, just a feeling of heaviness - I guess is a way to describe it.

 

Can anyone else relate to that? There's just such a HUGE scope of symptoms, I don't understand how it's all lumped in as Cataplexy. Maybe someone will be able to better clarify for me.

 

Not that it matters what those feeling are or are not (in my case, anyway) - I mean, it is what it is, right?  ;)



#15 ironhands

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Posted 13 November 2013 - 01:02 PM

I get that feeling as well, I always thought of it as anxiety.

 

In my understaning, and I have no idea what I'm talking about because I don't experience cataplexy as far I know, it works like this:

 

There is a mechanism in place during sleep that prevents people from acting out their dreams physically, essentially paralyzing the sleeper.  I believe (and I have no facts to back this up), that when emotional triggers happen in the dream, the body pumps out more of the paralyzing agent to compensate for the accopmanying adrenaline release.  Since many with N sit on the border between the sleep and waking state, the brain kicks out that same agent during the waking state, incorrectly interpretting that the person is awake and needs the paralyzing effect to prevent themselves from acting out the circumstances of the perceived dream. 

 

Again, not having experienced it as far as I know, that's how I see it... Anyone have any solid info to validate/invalidate what I've said?  Makes sense to me and my limited knowledge of C.

 

I can relate to the feeling of heaviness after eating.  That's why I skip breakfast and lunch, I get too tired to function after I eat.  It's much, much worse if there's gluten in the food.



#16 sk8aplexy

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Posted 13 November 2013 - 03:49 PM

Well said, I couldn't agree more...  --> "There's just such a HUGE scope of symptoms, I don't understand how it's all lumped in as Cataplexy."  <--

It seems that there is a lot of confusion out there as to what Cataplexy is or can be, and I would love to see better terminology or a broadening of...

 

ironhands description is good, as to what is occurring.

 

Here's my $0.02 on it (a bit long, and likely mostly things I've already said somewhere on this forum -sigh-):

Cataplexy 'is said' to be only triggered by (descriptions, out there somewhat, vary) 'strong emotions' that occur during interactions, which are 'most often the pleasurable, or pleasant, emotions.' 

In my own experience with Cataplexy, such being emotions related to pleasures or happiness, is around 90% the case and/or reason for occurrence.

There are so many vast variations of what people experience, as far as triggers to their Cataplexy goes (some others people are triggered by are surprise, lights, anger, exhaustion, etc..).

I think triggers can be, for some to gauge why (or what is the triggering from); extremely subtle, camouflaged and nearly impossible to determine. 

For instance (in my own case), fighting Cataplexy seems to escalate it dramatically, when it first started occurring I'd resist it hard and wouldn't realize that I was doing such; once I was able to recognize that it (whatever it was) was occurring, and I attempted to just let it happen, eventually realizing that if I layed down quickly and relaxed along with attempting to let whatever triggering humor, or occurrence, go (breifly) the Cataplexy would quickly dissipate... 

My triggers are variable (I'll describe some of them down below), impossible to entirely predict, yet to a slight extent somewhat predictable.  That is once you've learned your own 'common triggers.'

 

'Minimal Cataplexy' -> many variations, but there being a brief muscle flicker, like a short of the muscles, a sudden intense (perhaps) wave of sensantion/s, this can be in one part of the body or throughout (this occurs in throughout 'moderate' and is real quick in 'severe' yet somewhat in 'n out during, as muscles go / then come back).  The article titled 'Complex movement disorders at disease onset in childhood narcolepsy with cataplexy' if you google such, has images of common facial Cataplexy effects, in children...

'Moderate Cataplexy' -> freezing and/or prolongued (30 seconds or more) twitching/twitchyness.

'Severe Cataplexy' -> involving near immediate, instant, collapse to complete temporary paralysis; person is conscious, able to think, hear and sometimes see.

I do feel there are worse occurrences for some people with it. For instance, (a sort of difficult combination I think is what I'm describing) falling asleep during it and/or the complete temporary paralysis lasting beyond a brief period as some can have episodes that last hours. 

 

Cataplexy, in my case, has been there in numerous forms basically for my entire life.  My parents recently told me, that as I baby, I would sometimes just stop reacting to them tickling me (from intensely laughing), they'd continue and I would blankly stare off.  As a kid, if I were tickled in the belly, I could laugh and roll, but my arms would be entirely non-responsive/limp; there'd be sensations everywhere throughout my body, and such seemed normal because I was being tickled.  No one tickling someone, is gonna fall (stop tickling) from the other while laughing, saying "ha ha, I can't stop you, because my arms aren't lifting, ha ha"...

 

Around 20 years old, I began to have to lean against the wall, or doorway, while laughing real hard; and only at home.  That turned into me having to awkwardly make my way to the ground, where I'd laugh.

It began happening quite frequently, more and more often.  Started to then note it was occurring also, when I'd be handing off plates of food that I'd cooked, to either of my parents, or also when they'd compliment me on the cooking.  I had to tell them to stop saying "the food is good" and/or complimenting me on it.  Smiles (of them enjoying the food) at the table even began triggering it, as well. 

Not long there after, I began to nearly collapse immediately, upon whatever intense laughter and/or while trying to hand off plates of food I'd cooked; while on the ground, at first I could laugh (similarly to as a kid while arms wouldn't respond, being tickled) but not long later on, I'd begin to laugh - collapse or make my way down -  then I'd stop laughing and just lay there briefly (paralyzed) before laughing again.

A really strange element of it all for me was, that this until my mid 20's, really only happened at home where I was most comfortable and with my guard down.

Throughout my 20's, I had very very frequent 'minimal Cataplexy' and learned to gauge it occurring, at the first flicker/wave/sensation.  It was happening where ever and around whomever, I skateboarded for years with it, landing tricks pleasure would cause my head to droop or cause me to have to step off immediately.  Letting my head, often shoulders too, droop along with feeling my face basically spasm briefly; was usually what worked.  If it progressed to 'moderate' I'd drop whatever and/or lean up against something within a step or few, in distance, or I'd make my way awkwardly to the ground and just sprawl myself out.

 

I can't nail it to anything specifc besides 'lifestyle adjustments.'  Mostly having to due 'perhaps with' having gone Gluten and Dairy free for a bit over a year now.  However, my lifestyle and behavior is very isolated, which is to say that if I tried to go be very social, likely it would not be long before I began collapsing again.

Maybe, the above is helpful, somehow slightly for someone?  I have no idea...



#17 Ferret

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Posted 13 November 2013 - 11:09 PM

Excellent description Sk8aplexy. I can relate to all of it. Mostly, my cataplexy is triggered by laughter and mirth because that it is my usual state of being. I have also experienced it with intense outrage (as opposed to anger), sorrow, grief and being startled/scared. I don't just crumple though. If I'm held up (to keep from falling) by someone, then I will vibrate like a tuning fork with increasing amplitude. I would actually prefer to be on the ground but I can't talk to tell them that. I do relay that info to them after the fact. If I'm sitting, my arms will become spastic and jerk (this usually results in things being knocked off the table). My hubby's voice telling me to "breathe" has become an important trigger to bring me out of it. It wasn't until he started saying it that I realized I wasn't and had to consciously think about breathing again.
I have gone through times when it's been very bad and frequent. I am enjoying a "lull" right now...only three in the last couple of weeks. Stress makes it worse.
The longer you have cataplexy, the more you learn ways in which to minimize it...like keeping your emotions in really tight control. The unexpected gets me every time.
quote "A really strange element of it all for me was, that this until my mid 20's, really only happened at home where I was most comfortable and with my guard down."unquote
Home is still the most common place for me too. It's a safe haven where I can truly be myself without judgement.

#18 metalman76

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Posted 14 November 2013 - 05:45 PM

It effects my legs and arms with weakness, my vision gets very blurry, and I can't talk either. Luckily I have only had 1 true collapse but have narrowly escaped more than I can count by sitting down or leaning across something. I have done a good job of hiding all of my symptoms (some even from myself) for many years although I had no idea what was causing them. Finally diagnosed 5 years ago or so.