Mild Cataplexy

[sleepezalot]

Can you please list any forms of mild cataplexy events that you may experience as I am not sure what they are as my doctor only talks about complete muscle weakness all over your body and I know that it can happen in isolated muscles
Thanks

[Bailey]

The Cataplexy is caused by emotions. For Instance, sometimes if I watch a movie and I laugh I can feel my skin going droopy under my eyes and mouth. It is mostly fleeting, but during stronger attacks I feel my body become a bit shakey and I have to sit down or I will fall.

My laughter, anger, and tears will normally bring on some feeling of facial drooping and full body attacks.

I will give you two examples. Keep in mind that most people with C have varying degrees of attacks, or spells, as I call them.

First Example. My mother showed me a video of my aunt who died three years ago. I was sitting, thank goodness, because as my emotions welled up, I lost complete control of my body, floppy arms and most annoying to me is that I can't hold my head up and it feels like it will break, it's automatic for me to ask for whoever is there to hold my head. I have a shakey feeling, for lack of a better description. I was aware during the event which lasted about a minute. I am always aware of my surroundings. I felt this attack coming on. When I can feel it coming on, I know I need to sit down fast.


Second Example. I came home and saw that the dog had gotten into the bag of dingo's and had them all over the floor. As I was seeing it, I fell to the floor and began to buck a bit then went limp. It happened faster than any other spell I've had to date. Same thing with the head thing and shakey feeling. It also lasted a minute.

I hope this helps you. I am a bit new to the C myself and am learning daily how it affects me and how to deal with it.

Good news though, the meds I am on have greatly helped. I take so many pills in the course of a day, but hey, if it works, I'm all for it Best Wishes

[lhutson1]

I have cataplexy that is mild (as in I don't have full body collapse). It took me 3 years to find out what I was experiencing (spells) was cataplexy and it was my family doctor who told me after I had seen specialist dr. after specialist dr.

Most information online talks about cataplexy as being very severe, full body collapses related to emotion.
Well I don't have that- sometimes my cataplexy is related to emotion but not most of the time. My main problem is with my eyes and neck or I feel like I'm going to fall over but don't. It's like I'm frozen- if someone were to run up and hit me I'd just get hit instead of being able to move. I remember swinging a child before and the swing came back and hit me and I knew it was going to but I couldn't move or stop it.

My eyes will cross and lately only one has become blurry... sometimes I have a hard time getting it refocused. I used to describe the spells as like a trance... but then I noticed it wasn't always like that, sometimes just my eyes would blur and I feel completely fine.
My neck gives out sometimes - like I can't hold my head up straight..

If I have cataplexy- my eyes will somehow be messed up- either crossed or blurry. My hearing is completely fine..I know exactly what is going on I just can't come out of it. Neurologist I saw thought I was having blank stare seizures but during a spell I'm completely aware which is different from seizures.

Does anyone notice their cataplexy has gotten worse over the years? When I first was diagnosed with narcolepsy- I didn't have cataplexy. Then the spells started and later the blurry vision started.

*One weird thing I do- and this is WEIRD- is when I get really scared (fire alarm goes off, stranger at door, etc.) I hold myself as if I were about to pee or something...
It doesnt' feel like I'm about to pee... I just hold myself and I don't know why. I wonder if it's related to cataplexy- like maybe I feel the muscle down there weak or something? I dont know it just makes me think it could be related to cataplexy because of how it's related to strong emotion. Thoughts?? I know, weird!

[Bailey]

lhutson1 - Now that I know what I have, I can look back over the years and understand strange things that have happened to me, like losing the ability to stand in the shower one morning, facial movement and so forth, but as time has progressed my little accidents have gotten closer together. In fact, the growing problem with the spells is why I went to the doctor.

You mentioned being scared with the fire alarm, stranger at the door...well the older I get the more jumpy I am. It takes litle to nothing to scare me, and people around me know not to sneak up on me because I immediately start to scream and jump. It may just be me and not the C at all. Heck, if someone comes at me with the intent of tickling me I cry. There is a weird feeling I get and it teras my nerves to pieces. I just can't handle it.

Its not weird about the holding yourself. It seems that allthough many people with C go through the same things, there are things that are unique to the person. At least that is what I have found in visiting forums and reading different peoples experiences.

[sleepezalot]

Thanks for your reply's! It does help as I feel like I am having knee buckling incidents but they are not associated with emotions so its nice to know that a few of you had these accidents before it turned into cataplexy.

[Rockies Gal]

Mild cat attacks can affect any single part of your body...something simple like an eye twitch or knees buckling. It's called partial cataplexy as opposed to full Cs where the whole body is affected. Either way, it's still cataplexy.

Also Cs are not just triggered from emotions. Lots of things can trigger them. To name a few...stress, sickness, menstruation, over exertion like exercise, lights or light patterns or flashing lights, sounds like music or sirens, certain fragrances, tiredness, lack of sleep, extra stimuli like from reading, studying, being inside stores, or traffic...you name it, and basically every emotion there is - ex: anxiety of standing in a grocery line or anticipation of waiting for your date to arrive or a phone call. And then there are cat attacks that seem to happen for absolutely no reason. Weird stuff, huh?

Someone asked if Cs get worse. Mine did. For years before I was diagnosed and knew what was going on, I had mild partial Cs. Then 2 yrs ago I had my first full body C at the age of 41. Of course everyone is different and not everyone who has C will have full Cs.

Warm wishes to you~*

[KaraWants2Sleep]

I have problems with my ears. I will get a loud buzzing and then will lose hearing for a few seconds or a minute. It only happens in one ear at an given time. I'm not sure if this is Cataplexy or not, but I have been checked by neurologists and ENTs and they just keep saying that my ears are fine. Does anyone else get anything like this?

I get the full body C fairly often, but I also get the partial C. I have the "heavy head" problem, where my neck gives out and my chin just rests on my chest. I also have a lot of problems with my knees giving out... my coworkers have gotten used to seeing me fall, though I usually catch myself before hitting the ground.

I am really still learning to deal with all this, my only suggestion for people with C is to stretch DAILY. Especially with my knees giving out I have tweaked my ankles pretty badly, but since they are so flexible it isn't that bad. It also helps for when you fall into an awkward position and you can not move, but you are perfectly aware of the discomfort/pain or the position you are in.

[Rockies Gal]

Kara, I regularly get the buzzing-can't hear thing with my ears, too. When I was younger, it would only lasts for a few seconds and happen rarely. Now it will last for several minutes and happen 2 or 3 times a week. So annoying! Yep, that's a partial cat attack. Aren't they fun? NOT!

[DizzyDozer]

I’ve wondered about the ear thing too. Sometimes I get the buzz before my hearing goes, but sometimes I just have the hearing loss. It’s like someone turned down the volume on the radio. I can actually hear sounds getting softer. After about a minute, the volume slowly turns back up again. It is more annoying when it happens in only one ear (which it usually does) because it messes up my balance.

[KaraWants2Sleep]

That's how mine is too... since nothing is actually wrong with my ear I figured that maybe, like everything else, my eardrum is just falling asleep.

[acongojada]

Wow,

It is so crazy about the ear buzzing. I am so glad that I saw this thread. I never connected that to C. My hearing doesn't totally go out, I just get the buzzing or ringing really loud in one ear for about 15 to 30 seconds or so, and then it immediately goes away. That is so weird, isn't it??

[tiredofN]

I've only had the buzzing when I've passed out--not a C attack, a real loss of consciousness. Only happened twice: once when I was getting a spinal tap and they hit some nerves--the buzzing got louder and louder and blocked out everything else; the other time I was on IV heart meds--too much medicine made my bp and hr plummet--the buzzing got louder and louder, and down I went, even seizing mildly. So, I'm not so sure that the buzzing is C. Could be something else.

[Eightlegs]

I had a spell just like that when I was a kid, right after getting my ears pierced. Couldn't see, crazy loud buzzing... but I was still conscious and I remember being completely terrified as I couldn't see or hear (and I was in the middle of the Mall!!)

[DizzyDozer]

My mother also described that sort of buzzing right before she passed out in the dentist chair one time when they gave her too much nitrous gas. I also had the hearing loss without the buzzing right before I passed out in the dentist chair for the same reason. I’m absolutely sure those incidents weren’t C, especially since my mother doesn’t have N. They were associated with passing out for reasons completely unrelated to N.

That’s why I found the hearing loss so confusing. The first time I had it, I was sitting quietly on a couch, listening to a conversation among some friends of mine. When my hearing started to fade, I kept thinking that it seemed just like that time in the dentist chair. I started to feel a little weak and I wondered how long it would take for me to pass out. I thought about how embarrassing it would be to pass out right there in front of everyone. But I never passed out and after a minute or two I was fine.

I’m not sure if I have C and I had been wondering if the hearing thing was C. I actually started a thread on this subject here several months ago, but I didn’t find anyone that had fading hearing as a symptom of C. I’d really like to know if this truly is C. My attacks are very atypical – not triggered by emotion, often one-sided. Those of you that have hearing loss as part of your C, are your attacks more textbook than mine? When you have hearing loss, do you experience other C symptoms at the same time?

[Rockies Gal]

DizzyDozer...I have cataplexy that is triggered by emotions and many others things not related to emotions, which I mentioned in an earlier reply. When an attack is about to happen, I get a warning. I will either feel like I'm going to faint or I will feel sick to my stomach. So what you experienced at the dentist that time is how my cat attacks usually begin.

As for the ear problem that is being discussed here...I experience partial Cs where I'll have poor hearing for a few minutes and then it will return to normal. For some reason that part of my body is taking a break, shutting off, going to sleep... whatever happens during a typical C. Then there are times my partial Cs dealing with my ears will involve buzzing. But like someone else said, you can experience this same thing with seizures or fainting spells. But for me...it's all cataplexy. I've had numerous EEGs to rule out the other conditions.