8 replies to this topic

[exanimo]

I had my first cataplexy fall today. It wasn't hard, and it was still only a partial cataplexy (meaning my entire body was not affected). I'm not sure how I feel about this, but I wanted to share. This is what happened:

 

Today and yesterday I've been in a goofy mood, and thus I've been experiencing some cataplexy more than usual the last two days. I've just been goofy, making silly jokes and being more 'emotional' than usual. A lot of neck weakness, resulting in my head falling to my chest or just slowly lolling - I don't know what else to call it. It's just when my head will slowly move from an upright position to the side, and then down towards my chest and as I recover my muscle tone it then slowly moves upright again. Or my knees will get weak, might slowly buckle. Or my whole upper body becomes weak and I kind of find something (like a table) to support myself. 

 

So today my boyfriend was over and I'd probably had a handful of these minor cataplexy moments within the last half hour. We were going down the stairs, and I was being overly dramatic, he was talking about how he isn't going to be the one to stand in my way of doing something I want to do, and I responded with " Oh so if I want to walk off a cliff you'd let me just do that" and just as I said it, my left knee completely gave way and I fell with my butt on the stairs. It wasn't a hard collapse, just that I sat down immediatly, and involuntarily due to my left knee completely losing all muscle tone. My upper body was weak as well, but not so much that I couldn't fall in to a safe position. No injuries, it didn't even hurt. But I was just shocked.

 

I've had many instances before, coming down the stairs where my knees get weak, and might slightly buckle, but never enough that I can't stiffen them to stop from falling. 

 

Anyway. I just wanted to share. I think it was probably a combination of having so much cataplexy lately, the strong emotion, and being tired. It was bound to happen, I suppose. I don't know if my cataplexy has worsened, I just think that I have recognized it for what it is, now that I'm aware of it. But meh. 

 

Anyone else remember their first cataplexy episode of falling?

[sweetest_shone]

I haven't fallen but still wanted to share what I have noticed lately:
I think this happens when I am under a lot of stress and maybe also if I am very tired but maybe not. I feel like my lower legs get really weak.. Like to the point to where I need to find a place to sit. If I don't sit.. That weakness radiates through my entire body and I almost feel out of breath and my body is dangly feeling or like jello. I'm not sure how else to describe it. This has only happened about 3 or 4 times. But I'm not sure if its a cataplexy thing or something else N related or nothing N related at all. I try to pay attention to my body and I'm so paranoid about C and other N symptoms sometimes I wonder if I'm reading into stuff too much.
Also, at other times I feel a tingling sensation in the same spot in my lower legs. Haven't paid attention to a cause or trigger yet. It's only happened twice. Just thought I would throw that in there just in case.
If anyone thinks they know if this was or wasn't C or N related please feel free to leave some advise!
Thanks!!

[DeathRabbit]

I haven't fallen but still wanted to share what I have noticed lately:
I think this happens when I am under a lot of stress and maybe also if I am very tired but maybe not. I feel like my lower legs get really weak.. Like to the point to where I need to find a place to sit. If I don't sit.. That weakness radiates through my entire body and I almost feel out of breath and my body is dangly feeling or like jello. I'm not sure how else to describe it. This has only happened about 3 or 4 times. But I'm not sure if its a cataplexy thing or something else N related or nothing N related at all. I try to pay attention to my body and I'm so paranoid about C and other N symptoms sometimes I wonder if I'm reading into stuff too much.
Also, at other times I feel a tingling sensation in the same spot in my lower legs. Haven't paid attention to a cause or trigger yet. It's only happened twice. Just thought I would throw that in there just in case.
If anyone thinks they know if this was or wasn't C or N related please feel free to leave some advise!
Thanks!!

That sounds more like a panic attack. But I suppose it could also be both. Having to deal with both N and anxiety is unfun. I haven't had anxiety this bad in years, but ever since my failed attempt at Xyrem treatment, I have just not been myself.

[sk8aplexy]

This response is more directed at Examino. 

Unfortunately, this sounds like Cataplexy (or at least very much like what I experience) to a tee.

The head slouching forwards, neck weakening, perhaps your face feels like a spasm occurs or that you have no control of your facial muscles...

Very much like a flickering of the muscles, whichever-where ever.

For me, it can cause me to freeze/pause and sometimes the muscles come back within seconds, or especially if I resist it I may then collapse.

 

It sucks and I'm sorry that you are also experiencing such.

 

The first that I can remember is as a kid (under 10 years old) my arms would not lift, when I'd try to push whoever tickling me, off.  There was no response and I could flail my body, but just not move my arms.

Around 20, I'd begin having to rest against the wall, and I began realizing that if I got down to the ground (sometimes it was a slow uncontrolled collapse) that I could play it off, yet obviously it was weird.   It seemed to only occur when I was in my home, around my parents, while I was joking and/or being silly, but it began happening as I'd hand off some food dish which I'd cooked (the pleasures...).

At 30 I finally knew what this was, learning more and more still, but with the understanding and recognition I at least can explain it, to a point.

It unfortunately escalated over that course of time and around 28 had interfered with most everything that I'd kept exhausting myself doing.

I skateboarded, did concrete construction, snowboarded and traveled, a whole whole lot; now though, I do less of it all and definitely I must avoid construction sites as they are full of joking.

The roughest part is that it is from pleasure, laughter, feeling good about something (near anything at times) and also it can happen when frustrated or stressed.

For me, it occurs 90-95% from the pleasure/s versus frustration/anger.

The silly stuff and me joking around, is what I have to avoid, yet I do such regardless when I feel safe to.  Skateboarding could not have prepared my reflexes more; I stand by that statement entirely 100% with no doubt. 

Sometimes, over-exhaustion can trigger it too, for me.  As I am also very sensitive to even just a very sunny day, but heat and especially with high humidity (which where I live can be near 100% too often) just makes me so weak (I have to be careful)...

Stress and anxiety do play into it all, any time such is there I am way more likely to have Cataplexy, EDS, HH and SP...

 

This that I am writing is not to scare you, I hope that I can offer you some methods of recognizing and/or perhaps understanding 'what/how it may be and what/how you can adjust'.

Meditation is a value as it is learning to disassociate from whatever, is outside of you (which tends to be triggers), I call the state of mind that I go into when I sense Cataplexy coming on, 'non-emotive' and basically focus first (of course) on getting down to the ground safely (if it is strong and/or building).  I've noticed very much, that if I resist and/or fight the 'flickering' that it escalates dramatically, even causing a convulse like tremor.  So, rather I just deal with it and try focusing inward on breathing, on my core; forgetting whatever (if possible) funny thing or cute thing, that has triggered it (that is tough when you still hear the comedy or can see others reacting to the ordeal).  Lastly, laying down and sprawling my arms out, however I can manage, and simply breathing while focusing inward, such dissipates the flickering and/or weakness and my/the muscles return quickly.

 

Again, am sorry this is occurring with you.  Feel free to ask anything and/or for any clarification of the above.

 

Sweetest-shone [Edited that mis-type, sorry bout that Sweetest-shone...], I can relate to the sensations you describe as well and I'm not sure whether what you describe is an 'all of a sudden and in response to some thing, triggering it versus being like a so-tired/weak feel that builds gradually'? You may find what I wrote above helpful, too?  When I'm doing physical activity I can wear out quick and feel so drained, I've found the same method of laying out sprawling my limbs out, helpful to regenerate some strength...

[sweetest_shone]

That sounds more like a panic attack. But I suppose it could also be both. Having to deal with both N and anxiety is unfun. I haven't had anxiety this bad in years, but ever since my failed attempt at Xyrem treatment, I have just not been myself.

[sweetest_shone]

I have had 1 or 2 panic/anxiety attacks before. This is different than those that I have had before. This is sudden, in that the tiredness in my legs just comes about. But it's slow the way it progresses and takes time to move throughout my body. But then again it is very hard to explain.
I bet laying sprawled out on the floor really would help. I'm temped to test it and see what would happen if I just stood there in the middle of the floor without leaning on or against anything and without going to sit or lay down. But I'm too scared! Haha
Thanks for your input!

[exanimo]

Sweetest_shone, I do think that what you are describing is related to N. You are saying that tiredness is the trigger? Is it just like, you go about your day, and begin to feel tired, and notice the weakness? 

 

It kind of reminds me of what I experience on occasion, when waking up. If I get out of bed the moment I wake up, then my entire body just feels like jello. It also aches. Almost similar to when you have a severe cold or the flu. But after moving around for a bit, it goes away. My neurologist told me it might be something similar to sleep paralysis, and not cataplexy. But idk, essentially, from what I understand they are the same. Just at different points during brain activity, with different triggers. But regardless, I do think that any kind of weakness like you described, is somehow attributed to cataplexy or N. I've heard others mention a tingling sensation, but I have not looked much in to that. You aren't alone on it, though!

 

Sk8aplexy, thanks for your reply! I am sorry to hear that you have dealt with cataplexy in the ways you have. I feel very lucky to only experience partial cataplexy. But I can definitely relate to your mention of reflexes - I used to do gymnastics and I still snowboard, both seem to help me when it comes to cataplexy! I hope that mine does not progress, as I've read it can. But your tips are very good, for anyone who experiences cataplexy. I like the meditation idea - I do practice meditation some all ready. 

 

Also, I agree that pleasure is a huge trigger! My most memorable connections I use (up until this recent incident) have been when I see my cats do something extremely cute, and my knees buckled on a few occasions. My neck would become weak, and I'd have to close my eyes and bend forward a little. But I have also had incidents with anger, but that's probably because I can have a pretty high temper at times.

 

I think something that has helped me as well, has been not resisting the cataplexy. I mentioned that I focus on it, and the region the cataplexy is affecting. But I don't try to resist it, it's more like Im fascinated by it...I don't know. It's new to me, and so rather than being peeved that I'm experiencing it, I just kind of take a mental note that it is happening. 

 

If you don't mind my asking, Sk8aplexy, are you on medication for N or C? If so, do they help? And if you're not, why? 

 

I don't know much about the medications for cataplexy, and am not really at a point that I feel I need them, but it would be interesting to know about. 

[sk8aplexy]

To respond first to Examino.  I second what you say entirely.  Sleep Paralysis sort of effect for sure could be.  Sometimes I'll feel drunk physically, like my balance is off and I stumble or sort of stagger; but that hasn't happened for a while, thankfully.  The lethargy, cloud weight like, body feel though does happen at times.

Meds have not helped 'me', I've not tried many but have not had success, if anything for me they just sort of scattered effects of one thing with another, not eliminating any of it nor helping in a manner that was worthwhile for me.  Xyrem I do not think I can take, as I have minimal-moderate Central Sleep Apnea which relates to breathing and such is a no no, from my understanding relating to Xyrem; it has never been offered and I have no interest.  What has helped me the most, is avoiding stress and anxiety along with strict diet yet that is fine because I cook near everything that I eat and am a good cook.!  Finances are stress and build anxiety, being income-less and helping my incredible Mother, who helps me, is all that I've been able to manage, even through my 20's when I had more functional abilities/capabilities...

 

Below; I'm only speaking from my own experiences and I'm not a sleep specialist nor doctor.

I have read a lot, for years now, relating though because Cataplexy effects me and interferes with my life more than the common EDS although I do experience that too...

 

'Cataplexy does not come out of no where.'  If there is no triggering emotion, then it is not likely to be Cataplexy.

 

Now, emotions can be vast and broad in a multitude of ways.  That is to say though, that perhaps if you're physically weak (central fatigue, for instance) or some other matter like blood sugar or something is effecting you, to a point that it is causing a sudden sort of panic attack; that is emotion, yet Cataplexy is specific to being triggered and hits in a fast occurring manner 'typically'.  There is no 'Normal' in my mind, perhaps due to N w/ C and the complexity.

I do think though, that it can be a lingering flickering, especially if one fights it.

 

It effects each and every person with it, differently in ways, thus it is very hard to explain and also perhaps easily confused with other occurrences.

There is 'clear-cut Cataplexy' which I believe is the person collapsing, near immediately, after some funny or emotional response; the person is basically paralyzed briefly, or for some they fall into actual REM sleep when it occurs and awaken when they awaken. 

Generally (as is in my case) the person can hear, think and often see to some extent, they just can not move. 

My Cataplexy occurrences are always in some response to either something very funny or at times from silly frustrations (that is usually just to do with, how, can they not understand what I've stated as clearly as I can) but as I said in the earlier post 90-95% of the time it is, simply the pleasures.  If I collapse, I am usually up in less than 20-25 seconds, unless there is something funny continuing or other reacting oddly, intensifying it. 

Also, Cataplexy can be just a flicker, a bobbing of the head, or the weakness of some body part;  for years I managed to keep skateboarding a lot, if I landed a trick I'd often have to step off the board and pause, while looking downward because my face was basically spasming and my neck/head/face muscles were gone.  Dropping things or being unable to maintain something in your hand, happens too.

Examples of triggers for me.  Funny things which another has said or done, perhaps something I've said that is funny, at times very cute kitten/cat behavior has triggered it, doing something very nice for another and that spurt of joy during the interaction moment triggers it, silly/odd stuff like opening a door and someone being on the other side about to open the door, someone smiling at me unexpectedly, landing a trick I've been really wanting to learn (when I skated more that happened more), people hollering as/after I land some trick skateboarding... 

Watching funny shows like Curb your Enthusiasm, Parks and Rec. (as examples) will make me slide out of my chair and often continuing to hear it leaves me continuing to have no muscle tone awkwardly sideways dangling off the side of the chair and/or awkwardly on the ground...  You become like a ragdoll.

In fact, there is no responses of one's normal reflex points (like the knee cap), the body goes into autonomic mode, breathing slowly like when asleep; because it is REM intrusion into the awake state.

 

There are many dangers and I live in the best way that I can, to manage living comfortably and healthy, yet what that unfortunately has come down to is being by myself most of the time.

I should say this too, it is not consistent nor predictable, sometimes things trigger it when other times the same things don't.  Sometimes it is a flicker of the face, sometimes it is immediate collapse (this is what people I believe refer to as their knees buckling)...

 

Best of Luck.  And, know that, I am not attempting to scare anyone, only giving my experience and $0.02.

[sweetest_shone]

Sweetest_shone, I do think that what you are describing is related to N. You are saying that tiredness is the trigger? Is it just like, you go about your day, and begin to feel tired, and notice the weakness?

It kind of reminds me of what I experience on occasion, when waking up. If I get out of bed the moment I wake up, then my entire body just feels like jello. It also aches. Almost similar to when you have a severe cold or the flu. But after moving around for a bit, it goes away. My neurologist told me it might be something similar to sleep paralysis, and not cataplexy. But idk, essentially, from what I understand they are the same. Just at different points during brain activity, with different triggers. But regardless, I do think that any kind of weakness like you described, is somehow attributed to cataplexy or N. I've heard others mention a tingling sensation, but I have not looked much in to that. You aren't alone on it.

I think more that stress is the trigger. Or maybe something that goes along with it... Like feeling overwhelmed or just my mind thinking about everything.. anything like that in general. I don't think it's tiredness b/c I am tired all the time and I have dealt with EDS for a really long time too and I have never had his before now. It is always possible that it is a new N symptom that I haven't had yet.
But what you are describing is correct except for it doesn't hurt or anything like that. And I never really begin to feel tired per say. I wake up tired and go to bed tired. So you were saying it hits when I begin to feel tired, I would say no. That's the reason why I said it was sudden.