20 replies to this topic

[eightlegs]

I'm always trying to explain this to my dr, but maybe I'm just not using the right words. I've read posts where people mention shaking and trembling, so surely I'm not the only one. I've never had a full body collapse...normally my cataplexy seems to affect my arms. Used to be just anger, now laughing and surprise do it to. Sometimes they go totally limp, but often times they shake. If I try to lift them, or hold something (even as small as a pencil) they tremble and shake all over the place. I also get a general all over body shaking feeling that's triggered with emotion. Can anyone else relate to this, or is this something else non N related? I've had several dr's try and tell me it's low blood sugar, but I've had that ruled out several times.

[Marcianna]

Pfht. Annoying isn't it? I have that alot. It is the kind of shaking that makes you look like your naked in twelve degree weather. It is practically seizure like with me. It happens when I am trying very hard to not totally collapse during laughter. The worst for me is movies and other things that "disturb" me. I saw the forgotten last week and shook for the entire film. I would say in my very NOT expert opinion that this almost has to be some sort of Cataplexy. Shaking is mostly a "disturbed" thing for me like fear or disbelief. Does that help you at all? I dont know technicalities, but I can at least share my experiences with you.

[halfasleep]

I have shaking during cataplexy attacks. Usually I always try to cover my mouth because my lips are shaking. When I try to use my arm to cover my mouth, it shakes. Even my voice shakes. I also feel my eyes rolling around in my head during an attack. I think any part of me that I'm trying to control during cataplexy - shakes. These attacks last only a short time but of course it feels like forever as I'm certainly aware that people must be seeing my eyes rolling around and the shaking. I'm sure it must look like some sort of seizure activity.

When not in public I have had attacks last longer - maybe a minute or longer. I have let myself go totally limp in front of my family. It takes longer to recover when I let myself go limp.

It sucks.

[eightlegs]

"naked in 12 degree weather".. ....YES that's it... not with laughing or fear.. but it's usually if something REALLY really upsets me... I've been having some issues with my family lately (parents) and all it takes is one e-mail from my mom and half way through reading it it's like someone put a quarter in the magic finger machine.. or if I'm having a heated argument with someone.. and friggen A it's so hard to keep your composure when you look and feel like a Jello mold.

I also get it a little if someone sneaks up on me... weird...

[chimbakka]

when im over tired (happened all the time pre-meds and diagnosis) i'll get the shakes really badly. takes forever to drink a coffee, eat something, write, etc. when i was finishing my placement for school it got really bad. it's part of what made me go to my doctor finally and snap. now i mostly get it if im "running on fumes" but push my body on, or if i rush myself (ie running alte for work) or feel stressed. i have to sit and do some deep breathing nad sort of meditate to control it. (now, that is. before there was NO controlling it except huge amounts of sleep). now im just very careful and make sure my butt is out the door so i don't feel like im rushing to get to work, and avoid other things that make me anxious and cause this

[dogdreams]

Yeah I get this too but I'm not sure if it's the same thing. Mine are much more seizure-like, although I'm awake just like Cataplexy. Sometimes part of me is paralyzed while another part is shaking violently. I hate it. I know what causes it for me, now so it's not happening so frequently.

If I'm hungry I get the other kind of shakes where I can't control my hands, but it's different.

[ulooktired]

I feel like I'm shaking all over on the inside, you know it isn't visible. Best thing I can describe for doctor is that I feel like my body is in shock.

[dogdreams]

I feel like I'm shaking all over on the inside, you know it isn't visible. Best thing I can describe for doctor is that I feel like my body is in shock.

Oh that totally happens to me if I'm awakened in the middle of the night! I shake terribly and my insides feel like I'm in shock, or was shocked...it's weird.

[Marcianna]

Oh that totally happens to me if I'm awakened in the middle of the night! I shake terribly and my insides feel like I'm in shock, or was shocked...it's weird.

wow me too. I dont even have to describe it. seems you guys already know!

[eeyoreangel7419]

Thank you all for the comments here. My son is 11 and has been sick for over a year with all kinds of wierd symptoms that mystified his doctor. Among other things, he gets these episodes of violent shaking. Sometimes its only his head twitching or a hand, but other times it can involve his whole body. Arms and legs wildly flail and kick.
He has been tested for everything from epilepsy to lyme. They all come back negative. Eegs show no abnormal brain activity. And when doctors started looking into narcolepsy for his other symptoms, they were all perplexed by the tremors. So I started more research of my own. And now I feel like I have found the missing puzzle piece.
He also has severe attacks of cataplexy. Sometimes they are associated with his passing out and sometimes not. Since cataplexy is loss of voluntary muscle control, the thought that these tremors are associated with that is very interesting.

[Marcia.was.here]

Thank you all for the comments here. My son is 11 and has been sick for over a year with all kinds of wierd symptoms that mystified his doctor. Among other things, he gets these episodes of violent shaking. Sometimes its only his head twitching or a hand, but other times it can involve his whole body. Arms and legs wildly flail and kick.
He has been tested for everything from epilepsy to lyme. They all come back negative. Eegs show no abnormal brain activity. And when doctors started looking into narcolepsy for his other symptoms, they were all perplexed by the tremors. So I started more research of my own. And now I feel like I have found the missing puzzle piece.
He also has severe attacks of cataplexy. Sometimes they are associated with his passing out and sometimes not. Since cataplexy is loss of voluntary muscle control, the thought that these tremors are associated with that is very interesting.

I am almost sure it is a cataplexy issue. Though I cant say that not being a doc and all. My tremors and shaking are are as a result of some sort of emotional based reaction, just like cataplexy. When you think about it, shaking as another form of loss of muscle control... so it makes sense in my head anyhow.

[mgl]

I do not believe I have cataplexy, but I do shake sometimes when I'm woken or have an emotional reaction. It's shaking like I have a fever.

[toby]

I have only rare / occasional cataplexy. The atacks have started with twitching , usually in my eyes, then onto twitching, irratic body movements all over, often feeling of extreme coldness, like excessive shivering, then total paralysis, unable to move or talk, this then lasts about 2 - 3 minutes. I have only just realised after 17 years that this is cataplexy. I have lived in fear, not knowing what was wrong with me for so long.

[Sleepingcrow]

I'm always trying to explain this to my dr, but maybe I'm just not using the right words. I've read posts where people mention shaking and trembling, so surely I'm not the only one. I've never had a full body collapse...normally my cataplexy seems to affect my arms. Used to be just anger, now laughing and surprise do it to. Sometimes they go totally limp, but often times they shake. If I try to lift them, or hold something (even as small as a pencil) they tremble and shake all over the place. I also get a general all over body shaking feeling that's triggered with emotion. Can anyone else relate to this, or is this something else non N related? I've had several dr's try and tell me it's low blood sugar, but I've had that ruled out several times.

Yep. I had the shakes as my first symptoms of cataplexy. The shakes are what I label a very minor attack, and eating usually helps. Drinking lots of water too helps, as it means I didn't drink enough the day before (dehydration). Once I start feeling the fuzzies in my wrists I know I have to stop everything I'm doing and sit and relax, otherwise I'll have a medium attack (slouching neck, wiggly knees, and limp arms and wrists).

[angeline]

I shake too! Eye rolling, arms flailing, legs trembling, the whole nine...I was recently diagnosed with sleep apnea and now use a CPAP machine. I shake less than I used to. I think part of my problem was too little oxygen. That probably doesn't help everybody bcuz everybody doesn't have apnea. It just so happened that while the doc was looking for narcolepsy he found out I had apnea first and had to treat it b4 going forward with testing for narcolepsy. Anyhow, I do shake a lot less and the cataplexy has decreased, not gone, but decreased sure beats what I was going thru before they found the apnea.

[rich]

I shake too! Eye rolling, arms flailing, legs trembling, the whole nine...I was recently diagnosed with sleep apnea and now use a CPAP machine. I shake less than I used to. I think part of my problem was too little oxygen. That probably doesn't help everybody bcuz everybody doesn't have apnea. It just so happened that while the doc was looking for narcolepsy he found out I had apnea first and had to treat it b4 going forward with testing for narcolepsy. Anyhow, I do shake a lot less and the cataplexy has decreased, not gone, but decreased sure beats what I was going thru before they found the apnea.

I think this is where I belong.... the shaking group. My "tic" is: I bend backwards from the waist in a jerking motion. It's never one jerk backwards and the bending is so severe that my bad back hurts. Sometimes I collapse on the floor. I am an art professor at a college and my beginning students drop my classes like flies. My advanced students who know mw follow me to make sure I don't get hurt. The bending backwards and shaking is so embarrassing, especially in a line at the bank, in front of the campus police, the dean, vice-president and scores of faculty at our gathering before school starts. I have a habit of getting out of my chair when a movie gets too intense and you can bet I'll be bending and jerking and then shaking. You can gauge how good a movie is by my jerking.

There has been talk of the college putting me on a medical leave, without my consent, because they see it as a safety issue. If they do that, they will get rid of the art program, as California schools are closing down art and music programs. I have to hang in there and get rid of this someway.

Does this sound like cataplexy? You never see anyone with cataplexy on "you-tube" jerking............ they all fall down.
Thanks, Richard

[angeline]

Ya know, I'm wondering if this is really some kind of channelapathy or periodic paralysis that I heard about. I have not seen the videos on the periodic paralysis association website but I have read the posts and what you described sounds a little like that.

I don't just fall down either. My symptoms are weird too. They don't sound like typical cataplexy.

What if we have a combination of cataplexy and channelapathy?(hope I'm not opening a can of worms here)

[Sleepingcrow]

I get the shakes when I haven't eaten enough, or slept enough. It's like I have parkinson's disease until I eat and my system calms down. once in a while I get twitches too. I feel like a robot in my thoughts and movements with my head neck and eyes, but man! when I'm like this I can really focus and do things that trigger me emotionally, like doing the dishes, and there's no emotional reaction, I'm just doing, so since that's out of the way, I can just sit and breathe, and it's al good, the twitching and shakes go away.

[Phi]

Hi there! I just found these message boards. I was diagnosed with N w/C last year at the age of 31. I also have shaking...more like thrashing...with my more intense episodes of cataplexy. My eyes move, too...like rapid eye movement but I can feel it and am awake. My legs kick, and I have spasms, shudders, like a seizure, but I am alert awake and unable to control them. These are short (seconds to minutes) followed by deep, heavy cataplexy where it's even hard to breathe. After a little while, I can slowly begin to move, my mouth usually first, though I slur for a while, then my head, arms, upper torso. Lower torso and legs take a while to regain stregnth and "listen" to what I want them to do. So frustrating. But, relieved to hear that so many others have similar cataplexy attacks.
Was misdiagnosed several times. Lots of ct scans and mri's looking for ms, painful nerve studies, etc, told I was faking crazy making it up ,until I saw a sleep specialist, had a mslt, and there was no question as to the diagnosis.

[rich]

Hi there! I just found these message boards. I was diagnosed with N w/C last year at the age of 31. I also have shaking...more like thrashing...with my more intense episodes of cataplexy. My eyes move, too...like rapid eye movement but I can feel it and am awake. My legs kick, and I have spasms, shudders, like a seizure, but I am alert awake and unable to control them. These are short (seconds to minutes) followed by deep, heavy cataplexy where it's even hard to breathe. After a little while, I can slowly begin to move, my mouth usually first, though I slur for a while, then my head, arms, upper torso. Lower torso and legs take a while to regain stregnth and "listen" to what I want them to do. So frustrating. But, relieved to hear that so many others have similar cataplexy attacks.
Was misdiagnosed several times. Lots of ct scans and mri's looking for ms, painful nerve studies, etc, told I was faking crazy making it up ,until I saw a sleep specialist, had a mslt, and there was no question as to the diagnosis.

It's odd that info on cataplexy doesn't include these unwanted twitches, oruncontrolled body movements. If I had read discussions on this forum, I wouldn't have been so nervous. My doctor says that when I am typing and my fingers keep typing the same letters and I can't stop, that this is cataplexy, but the typing of jibberish is automatic behavior. I will reply and send the emails I have been sending. Anyone have a hard time deciding if it' who or how? Has anyone written a check and the 2nd line where you write the amount says (like $5.00)
I put absent 2 days, testing. Anyone spend an hour looking for keys and they are in your hand? How many of you can't spell a word and you spend an hour looking at it and then decide that the word NOON is Korean so you re-write the email so you can avoid having this discussion with yourself whether you can bypass it completely. Are you so forgetful that you make 10 trips back and forth from the car to the house. And finally I get my wallet out to pay, but I left it at home. So I drive home to get it, I get distracted. I go back to the store and I still don't have it because I forgot that I went home to get it. 3rd time was the charm, and I finally got it.