Jump to content


Photo

Shaking, A New Symptom Of Cataplexy?


  • Please log in to reply
8 replies to this topic

#1 firedancer

firedancer

    Member

  • Members
  • 1 posts
  • Gender:Female
  • Location:Wisconsin
  • Interests:Sleeping, my dog...hmmm...and sleeping!

Posted 08 July 2009 - 12:16 PM

Hello everyone. This is my first post. I was diagnosed with Narcolepsy w/cataplexy a year and a half ago. You could say that even though I take my meds (Vyvanse, Provigil, Lexapro) and see my neurologist every 3 months, I have been in sort of a denial. I try my hardest not to laugh, so not to bring on the cataplexy and embarrass myself, and I keep my medical troubles to myself. But I had a bit of a scare this morning while driving to work. I started to experience weakness all over my body and my hands started shaking. I was able to drive normally, but it was freightening! Was the shaking from me trying to force my weak muscles to work? Has anyone with cataplexy ever experienced this before? Thank you everyone. You all seem so genuine and kind that I finally got the courage to post. Posted Image

#2 Marcianna

Marcianna

    Member

  • Members
  • 817 posts
  • Gender:Female
  • Location:Sleep State
  • Interests:Compassion

Posted 08 July 2009 - 01:33 PM

hi! welcome to the forum! I love the name btw.

Yes. I would certainly consider shaking a cataplexy thing.

I do it all the time. cataplexy for me works like this:

Laughing - Complete collapse

Shock - complete collapse

Anger - Shaking and then maybe collapse

Fear - shaking and maybe collapse.

I actually shake so badly it looks nearly seizure like.

How funny cuz I just posted something last night and I was shaking so bad its full of typo's.

The reason I think it is a cataplexy thing is this. when ever I have a attack, the same thing happens, it wears me out some how and I end up falling asleep soon after. The same thing happens when I am shaking. actually the sleep comes faster from the shaking than the falling down I imagine cuz the use of my muscles and trying to force yourself to stop is a more violent action that if your just falling down.

I hope that helps a bit.

#3 sandkelly

sandkelly

    Member

  • Members
  • 5 posts
  • Gender:Female
  • Location:Virgin Islands
  • Interests:Music, Painting, biking

Posted 08 July 2009 - 02:36 PM

Hello everyone. This is my first post. I was diagnosed with Narcolepsy w/cataplexy a year and a half ago. You could say that even though I take my meds (Vyvanse, Provigil, Lexapro) and see my neurologist every 3 months, I have been in sort of a denial. I try my hardest not to laugh, so not to bring on the cataplexy and embarrass myself, and I keep my medical troubles to myself. But I had a bit of a scare this morning while driving to work. I started to experience weakness all over my body and my hands started shaking. I was able to drive normally, but it was freightening! Was the shaking from me trying to force my weak muscles to work? Has anyone with cataplexy ever experienced this before? Thank you everyone. You all seem so genuine and kind that I finally got the courage to post. Posted Image



#4 Marcianna

Marcianna

    Member

  • Members
  • 817 posts
  • Gender:Female
  • Location:Sleep State
  • Interests:Compassion

Posted 08 July 2009 - 09:55 PM

SandKelly,

Your response did not show up sadly... could you respond again?

#5 Irishhh

Irishhh

    Member

  • Members
  • 178 posts
  • Location:Kentucky, Yes, we wear shoes!

Posted 08 July 2009 - 11:15 PM

I don't know. I hate cataplexy. I wish they'd find a better way of explaining it. I am constantly wondering if what I've been experiencing is related to cataplexy or not... Especially with the whole it has to be emotions thing. Aren't we always feeling some kind of emotion? It confuses me so much, and isn't confusion an emotion? Yes, it is. So why not have cataplexy all day everyday? Because not everyone is affected by it the same way. Leaving me to believe that the definition of cataplexy just sucks... and shaking is probably part of it. Cataplexy seriously needs to be reevaluated.

I was walking around the other day because I was so totally bored at work and I needed to get away from my task for a moment. As I was walking, I got a weird rush through my head. Lights were weird, the colors were weird, and only one of my legs began to shake, my right one. I felt I was probably going to fall down, but I had enough time to realize this and sat down before it was too late. I was unable to get up for quite a while, maybe partly because no one was around at the time and I was afraid something might happen... So I just stayed for a while where I was. Was this cataplexy? I don't know.

If I'm just really tired, like so tired I can barely hold myself up, I'll sit down just to make sure nothing happens. I've only had a full body collapse once and that was when I physically exhausted myself and had frustration all at once. I was making the bed and was having a hard time with the fitted sheet. I overheated as well and I didn't really have time to react. Maybe 2 seconds if at all, but I just walked away from the bed when it hit so I was near a chair.

The other thing is that if I am tickled anywhere below the waistline, say behind the knee, I can't stand up. I just fall. This is a new thing for me though.

I found a list of emotions, I don't know if it will help anyone or not, but I think it helped me. I highlighted ones I think people mention the most or that I think get to me. I definitely think that negative ones are more on my side than positive...

Positive Human Emotion

Adequate, Awe, Assured, Able, Capable, Certain, Charmed, Cheerful, Comfortable, Compassion, Courageous, Confidence, Determine, Delighted, Eager, Energetic, Enthusiastic, Excited, Exhilarated, Expectant, Elation, Empathy, Excellent, Fascinated, Glad, Good, Great, Grateful, Glorious, Glamorous, Graceful, Happy, Hopeful, Humorous, Inspired, Interested, Joyful, Magnificent, Lust, Love, Pleasure, Playfulness Peaceful, Pleasant, Powerful, Pride, Positive, Relaxed, Relieved, Satisfied, Surprised, Sympathy, Stable, Sublime, Superior, Thrilled

Negative Human Emotion

Annoyed, Anxious Apprehensive Agonize, Anger, Anxiety, Apathy, Bored, Burdened, Cautious, Competitive, Concerned, Confused, Contempt, Depressed, Destructive, Disgusted, Distracted, Doubtful, Disappointed, Exasperated, Exhausted, Embarrassment, Envy, Frustrated, Fear, Guilty, Greed, Grief, Harassed, Hesitant, Hostile, Ignored, Impatient, Indifferent, Intimidated, Isolated, Irritated, Jealous, Jumpy, Lonely, Mad, Manipulated, Miserable, Obnoxious, Overwhelmed, Panic, Pressured, Remorse, Revenge, Shame, Sad, Scared, Shocked, Suspicious, Stress, Tired, Uncomfortable, Uneasy, Used, Wary, Weary, Wasteful

#6 Marcianna

Marcianna

    Member

  • Members
  • 817 posts
  • Gender:Female
  • Location:Sleep State
  • Interests:Compassion

Posted 09 July 2009 - 12:32 AM

tickling. ugh.

I hate that. alot of times during C, I actually stop breathing and tickling is one of those times. I have a frim no itckle rule.... that apparently most dont take seriously. incredibly annoying....

I agree C should be reexamined especially since it can vary so dramatically.

#7 hathor

hathor

    Member

  • Members
  • 103 posts
  • Gender:Female
  • Location:england
  • Interests:i have lots of interest. i love history, movies, books (stephen king,dean koontz and barbera erskine are my favs), my dogs, travel.

Posted 14 July 2009 - 12:10 PM

aarrrrrrrggggggghhhhhh!!!!! tickling. i hate this. that is a big no no. like someone said tho people dont take this seriously. my friends son knows he can get anything out of me if he tickles just to get him to stop. he is a strong 17 yr old and im like an aunty to him bt he has figured this out. i cant fight back cause the C kicks in i cant breath or talk or even laugh. im really ticklish so it isnt good. as for the shakes, well i get them all the time somedays i can have them constantley but i have the sleepiness at the same time so trying nt to shake makes me so drowsy eventually i just crash. im out like a light my friends know to just leave me until i come round then just carry on as normal. they say emotions trigger cataplexy this is true for me. before i was dianosed i spent my childhood refusing to laugh (this gave my mum a clue something was wrong) i didnt laugh properly until i was in my early 20's but life is too short not to laugh. but on a shakey day i just shake and sleep anyway. i can just be chatting to my friend about anything not even laughing or being angry etc, and ill start shakingthen im gone. so is cataplexy just caused by emotions or is it something that just happens?

#8 sleepless sleeper

sleepless sleeper

    Member

  • Members
  • 877 posts
  • Gender:Not Telling

Posted 21 July 2009 - 09:11 PM

my arms shake a lot. especially in my shoulders. sometimes my legs.

#9 eww

eww

    Member

  • Members
  • 169 posts
  • Gender:Female
  • Location:Ontario, Canada
  • Interests:At the moment... mostly sleeping. And then my animals and university.

Posted 23 July 2009 - 01:38 PM

I thinkcCataplexy means totally different things depending on who is doing the defining. It's tricky because the people who define C usually haven't experienced it and those who have experienced C or "C-like" things don't usually have the training or medical lingo to properly describe it. And I believe the only medical tests they have for C specifically is testing deep-muscle reflexes (could be wrong there though). And even that test is tricky because apparently from what I've read, it's quite rare to have C at a drs office. I guess it doesn't usually happen on demand? So unless we go around being constantly monitored for reflexes we probably won't get a clear-cut answer for quite a while (I would be totally thrilled to have a 24 hour ambulatory EEG to figure out when I'm awake vs asleep though!!). That being said, I'm of the opinion that "reasonable conclusions" can be drawn by comparing experiences. There should be more research into comparative and personal experiences of C in particular and N in general.

When I get excited or embarrassed I've always "felt funny". I conveniently need to escape to the bathroom during movie climaxes or tv awkwardness when the feeling gets too much. I was the only one hanging out in the theatre bathroom during Titanic's big finale and I can't watch The Office pretty much at all. LOL. There is no real way to explain. I guess it's like a headrush, shakiness or pins and needles. When I'm scared I become silent or slur. It doesn't feel like I couldn't talk properly, it's just a lot of work and somehow rarely works out right. When I'm startled or surprised I can get blurred vision, headrushes or end up sitting on the floor.

This is all normal. It's been explained by any one or combination of fainting, shock, hypoglycemia, low blood pressure, being overly emotionally sensitive and having an overactive startle response. For years I've been reading books where people collapse in joy, get weak-kneed with excitement, laugh until they can't move, shake in anger or frustration and become paralysed with fear. LOL. My dr has says I'm negative for C. He's firmly in the camp of those who specify exactly which emotions should cause which responses for it to qualify as C.


Last week my father and brother were so earnest, hilarious and horribly off-key humming a duet to "Eye of the Tiger" in a game of Cranium that it caused a good old-fashioned head-to-table collision. So maybe when I next see my dr we'll reassess. I think laughter is the only typical C trigger I experience and even then it's not often as I have to be really belly laughing or giggly.

My bet is that if there was more research that took a closer look at people as individual case studies, they would find a heck of a lot more similarities than the official symptoms.

I mean we can't all have the same psychological issues that cause creepy lurkers in our bedrooms at night.