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Is This Cataplexy?


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#1 Fallen

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Posted 29 October 2008 - 11:29 AM

I have Narcolepsy and Cataplexy. I am familiar with most of it. But Something happens when my Boyfriend and I fight that is Cataplexy like... but yet maybe it's not? There is no way for me to explain this without me being a Drama Queen and for that I apologize profusely. Let me tell you about this morning and my reactions so that maybe you can help me figure out if this is a Cataplexy attack or not. The thing is it last so very long... like easily between half hour and an hour, and that doesn't normally happen with laughter and shock.
(I am not looking for relationship help, I already know what kind of idiot I am! lol. Thanks anyway.)

We were fighting pretty serious this morning. I wasn't even out of bed yet. He was yelling at me and throwing stuff and getting upset that I would not talk to him I was ignoring him again etc etc....
I on the other hand was like frozen. When this happens I cant move, I cant breathe, I cant speak. I just lay there limp and my arms will twitch really badly. I have no control over this. So I just am there in that position with tears running down my face completely unable to respond or protect myself. Even after the fight is over, even when he has left, I am still there for a very long time, like I said between 30 minutes and an hour. Then when I am able to at least breathe again, I am so tired I go straight to sleep for hours. With normal cataplexy, I just crumple to the floor and get back up again. Is this the same thing only worse? What is happening to me when I am clearly in such a vulnerable position? Honestly it scares me to death. Today is not the first time it has happened. And I am getting very concerned about it. Will this happen later on for other reasons than fighting? I'm not really sure what to do.

#2 Mike M

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Posted 29 October 2008 - 11:14 PM

Fallen,

I am sure that others will offer their thoughts, but what you are describing sounds like sleep paralysis, especially since you were in bed when it happened. During sleep paralysis, you are awake, but your brain gets confused. Like cataplexy, your brain triggers the autonomic response to REM, immobilizing your muscles as if you were in the dream state. But, it often lasts much longer. Others who have experienced sleep paralysis talk about it in the same language that you used. I hope that helps.

#3 Lais02

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Posted 30 October 2008 - 01:27 PM

I agree with Mike. Sleep paralysis is what I thought of too. I have very mild C. I definitely experienced sleep paralysis many times though, so maybe someone with C who has it in a range closer to yours could comment better.

Sorry I'm tired right now and can't seem to figure out any words to write anything more... that would make sense!

#4 Kimberly

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Posted 02 November 2008 - 04:53 AM

The thing that makes me question whether this is Cataplexy or Sleep Paralysis is the fact that it happened during an intensely emotional situation, and Cataplexy is typically brought on by emotions.

What is happening (brain turning off muscles to prevent from 'acting out' dreams) is technically the same thing in Cataplexy as in Sleep Paralysis --- the difference is, in Cataplexy it happens due to an emotional stimulus, whereas in SP it is just carried over from the normal action of REM atonia during sleep. So it could have been a combination of both if you were just waking up, I suppose.

My Cataplexy has never been very long-lasting and I do not experience SP, so I can't say for sure -- but I have read about others whose Cataplexy attacks last so long that they have to have an assistance dog with them to keep people from erroneously trying to administer CPR.

I am concerned that you could be seriously vulnerable in this state if things were to progress from arguing to something more physical. I am not aware if they lessen the instance of Sleep Paralysis, but I do know that certain anti-depressants do lessen the effects of Cataplexy (I myself am on Effexor XR for this reason). You might want to talk to your doctor about it and see if an anti-cataplectic medication would be a tool that might help you feel stronger during this rough time.

#5 Fallen

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Posted 02 November 2008 - 07:16 AM

Thank you all for your replies. I should be more clear though I am sorry. This has happened before, not just when I am in bed. It has happened while I am up and about and I have to sit down. Then I just kind of slowly slip into this "phase" My friend suggested that it was neither SP or Cat, It was just my mind seprating itself as a way for it to protect it self. Which doesn't make sense either. I just dont know.

#6 dogdreams

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Posted 02 November 2008 - 07:31 PM

This happens to me, and I've been there with the boyfriend thing too. You're not alone. Mine use to pinch, bite, and hit me when I was in C to try to "snap me out of it". It was scary.

I have N with severe C, and I also get long episodes where I'm paralyzed but I have seizure-like movements in my arms and torso. I can't even breathe at times. It's not considered a N symptom, but there are a few of us out there with it, so you're certainly not alone. I've yet to find a doctor that knows what it is, so I just call it myoclonus for simplicity's sake. Taking Klonopin helped for awhile but don't ever take that drug long-term. It really screwed me up for awhile.

Some of my triggers for these episodes are: dehydration, long sun exposure, and certain foods I'm sensitive to, like wheat. I don't have many episodes at all if I avoid foods that are bad for me. Next time it happens, think back to what you were doing in the last hour and see if there might be any similarities between events. Your trigger might not be a normal C trigger like emotion. Sometimes I also wake up having a "bad day" and just have symptoms from not sleeping well. There's nothing I can do about this but call in sick to work and sleep all day. Sleeping always makes these episodes disappear and makes me feel somewhat normal again, but sometimes it's hard to get to sleep when I keep shaking.

Feel free to private message me if you ever need to talk. I can even give you my phone number if it helps. And you are not being a drama queen. Not even close! smile.gif

#7 jlossrn

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Posted 07 February 2009 - 04:42 AM

WOW, There are so many people experiencing different things and while some are true cataplectic attacks, Others are more in keeping with psychological responses. The Experience that the woman was describing when fighting with her boyfriend is a withdrawl from the current situation. Ask yourself if it is worth it to continue with the current situation or not. Sometimes we are so used to a situation no matter how harmfull that we think it is normal. Others who are looking in, see the situation for what it is. These people and or friends may tell you things that you do not wish to hear. You may deny it because you do not wish to believe that they are true. Yet, in your heart of hearts, you know that it is. There is a better life for everyone if you only have the strength and courage to believe in yourself. Have trust and faith in Life that there is more than daily arguing, fights, and tears. Believe in yourself. Love who you are and life will take care of the rest.

As far as true cataplexy is concerned, I was always experiencing knee buckling or dropping things. My vision would go blurry or I would slur my words. I too have experienced the electric shocks. They felt like my brain was desperately trying to stay alert when another part of it was equally trying to fall asleep. My cataplexy has never been dramatically associated with emotions. The other night, I experienced my first full collapes. My son needed a diaper change at 4am. I went and got the diaper, When I returned to the bedroom, My body simply lost all muscled tone. I fell to the floor like a rag doll. I didn't fall face first. I just crumpled down like someone cut the strings from a puppet. So I lay on the floor with my knees bent and my cheek on the floor. My son says "Daddy fell". The only thing I was able to do was moan a weak UH HUH... as I lay there, I'm thinking to myself. "so this it was a full attack feels like, I hope it doesn't take too long for me to get back up". Then my son says "daddy is being silly again". I was then able to weakly say "Daddy is silly, I'll be right there buddy". Then slowly I begin to feel like I have a little bit of energy and I'm able to get back up. This whole process from fall to getting back up took only about 2 min. I hope and pray that I never have to experience that again.

#8 eightlegs

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Posted 07 February 2009 - 02:11 PM

My cataplexy seems to be limited to my arms and neck (once in a blue moon my legs.... but rarely). General stress for me isn't so much a "trigger" but when I'm stressed out for a few days, I'm more prone to every little thing. I can imagine the situtation you're in would be stressful to say the least.

Mine are short lived... but I definitely twitch... and I've had mild episodes that lasted over a half hour.. where I wasn't completely immobile, but what I call "jello".

The being unable to breathe part seems a lot like SP... I had a whopper of a sp spell the other night where I was convinced they were going to find me dead smothered in my pillow... I've had sort of a shortness of breath with C though...

Heck.. ok.. maybe that's not much help... but as for the boyfriend... you obviously know something is wrong... and whatever is causing your spells you are truly in danger. Please get yourself out of that situation....

#9 desertpond57

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Posted 07 February 2009 - 05:48 PM

QUOTE (jlossrn @ Feb 7 2009, 04:42 AM) <{POST_SNAPBACK}>
WOW, There are so many people experiencing different things and while some are true cataplectic attacks, Others are more in keeping with psychological responses. The Experience that the woman was describing when fighting with her boyfriend is a withdrawl from the current situation. Ask yourself if it is worth it to continue with the current situation or not. Sometimes we are so used to a situation no matter how harmfull that we think it is normal. Others who are looking in, see the situation for what it is. These people and or friends may tell you things that you do not wish to hear. You may deny it because you do not wish to believe that they are true. Yet, in your heart of hearts, you know that it is. There is a better life for everyone if you only have the strength and courage to believe in yourself. Have trust and faith in Life that there is more than daily arguing, fights, and tears. Believe in yourself. Love who you are and life will take care of the rest.

As far as true cataplexy is concerned, I was always experiencing knee buckling or dropping things. My vision would go blurry or I would slur my words. I too have experienced the electric shocks. They felt like my brain was desperately trying to stay alert when another part of it was equally trying to fall asleep. My cataplexy has never been dramatically associated with emotions. The other night, I experienced my first full collapes. My son needed a diaper change at 4am. I went and got the diaper, When I returned to the bedroom, My body simply lost all muscled tone. I fell to the floor like a rag doll. I didn't fall face first. I just crumpled down like someone cut the strings from a puppet. So I lay on the floor with my knees bent and my cheek on the floor. My son says "Daddy fell". The only thing I was able to do was moan a weak UH HUH... as I lay there, I'm thinking to myself. "so this it was a full attack feels like, I hope it doesn't take too long for me to get back up". Then my son says "daddy is being silly again". I was then able to weakly say "Daddy is silly, I'll be right there buddy". Then slowly I begin to feel like I have a little bit of energy and I'm able to get back up. This whole process from fall to getting back up took only about 2 min. I hope and pray that I never have to experience that again.


Thats exactly how it is when I fall and the time it took you to recover is the same for me everytime. With everyone having so many different experiences/Cataplexy I couldn't help but feel that sense of relief you get knowing you're not crazy or alone. My worst fall was when I landed wrong and fractured my foot. The buckling knees, slurred speech are a daily thing now. I have noticed lately that if I bump side of my right knee I get a shooting pain and my left arm goes weak. I guess years of buckling and falling have taken a toll on them.
I have to say from experience that once something new shows up it seems to be a part of you, so you can bet on falling again. I'm just thankful for this site and the support.

#10 dogdreams

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Posted 07 February 2009 - 09:30 PM

QUOTE (dogdreams @ Nov 2 2008, 04:31 PM) <{POST_SNAPBACK}>
I have N with severe C, and I also get long episodes where I'm paralyzed but I have seizure-like movements in my arms and torso. I can't even breathe at times.


Follow up: the non-epileptic seizures are caused by a gluten intolerance. If I eat gluten I get these seizures for a few hours 15 hours after eating gluten, and spontaneous C for 3 days. Who wouldda thunk it? tongue.gif If I avoid gluten, I only get C when I laugh at jokes or feel fear & anxiety.

#11 twinkiesaram

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Posted 22 December 2011 - 08:19 AM

Before being diagnosed, I used to feel like I was going to drop or my legs were going to give out when I got very excited, laughing a lot, or sometimes very angry - perplexed. It only happened maybe once a month or on occassion and I have never collapsed or fallen. I used to think that it was because I had low blood sugar or maybe didn't get enough to eat that day. I actually contributed my EDS to some biological thing or lack of food/caffiene. When I finally was diagnosed and started reading about cataplexy, I wasn't sure if I actually experienced that or not since I've never fallen or collapsed. Maybe it's just a mild C?

Since starting Provigil though, I noticed an increase in the frequency of that feeling of dropping. I was joking around with some fellow interns and almost dropped the mug of water I was holding. Has anyone else experience an increase in frequency when taking medication?

#12 sleepyk

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Posted 22 December 2011 - 07:26 PM

The cataplexy-ish feelings I get have definitely gotten stronger since starting Nuvigil. My legs get weak, and stairs feel like mountains. My vision blurs now, too. My face gets numb, too, like I just got a shot of novacaine. Still not 100% sure this is C, but I didn't ever feel like this before taking Nuvigil. I have read on other posts that others w/N feel more C when taking a stimulant.

#13 phreadriquebean

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Posted 03 January 2012 - 03:45 AM

sleepyk and twinkiesaram, have either of you had a racing heart or palpitations when this happens? I have POTS and NCS. They cause a rapid increase in heart rate and a sudden drop in BP and cause very similar symptoms. Check out www.dinet.org for info about them. Since N and POTS are both related to inappropriate autonomic responses to normal stimuli, I wonder if they are related. I had to go off of Provigil last time I tried it because I had a major increase in my clear POTS/NCS symptoms.

That being said, I generally have very little C and have only had a few full body episodes that I'm sure of. I have a hard time telling if something is C or the POTS/NCS acting up. Sometimes I only know by how fast my heart is beating. Most of my C attacks are from exhaustion and tend to be the gradual, increasing heaviness in arms, legs, head type -- all symptoms associated with POTS/NCS. The ones I have been sure of have been more sudden and sometimes had an odd trigger, like a cold breeze when getting out of the car...

#14 Lorz

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Posted 08 March 2012 - 03:08 PM

This is amazing, reading all the posts from you guys where your experiences are eerily similar to mine. During my full body cataplexy attacks, my mouth also goes dry. Have any of you ever experienced this as well? I am wondering if it is directly from the cataplexy or if it is because I am panicking about having a full body attack.