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What Does Mild Cataplexy Involve?


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#1 tjunderw

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Posted 07 October 2012 - 09:31 PM

Hi all...yet another cataplexy question! I have tried to search old posts but still coming up short from what I am looking for. I was diagnosed with N about 5 months ago and have only met with my new neurologist that I feel comfortable with once, so we're still discovering everything about my condition.

I have never had a cataplexy attack where I've lost complete control so my original neurologist diagnosed me with N w/o C and just said "I would know if I had cataplexy"....yet without knowing much about it I wasn't sure how I should automatically know what to expect. When I came back to him with a list of situations I've experienced he shrugged it off as a coincidence and told me I would never develop or have worsening cataplexy. Now with my new (more friendly and supportive) neurologist, he is interested in anything I could think of, so I am just not sure how mild cataplexy can be. There are so many things I never gave a second thought to until I read about in articles or on this site and I am just interested in any of this could be cataplexy related and if symptoms tend to worsen as time goes on...

I always thought I was really clumsy because I tend to trip a lot. Also, when I am talking to people or having a stressful day sometimes I will try to do things like turn on/off lights or sort through things and my hands just run into things like my fingers don't work to actually accomplish what I attempt.
I've never lost function from laughing too hard, but when I get nervous or excited I frequently will slur through sentences or not be able to get things out, which I just thought was out of talking too fast.
The most frequent yet hardest thing to explain is that I have these periods of an almost daze...it's like I stare off, my eyes cross, I am very still and quiet and I know that physically I can move but sometimes I just can't 'decide' to, if that makes sense. I just can't get myself to move my body or gaze. My head feels like its floating and my ears ring, sort of like when you stand up too fast and you feel super dizzy. This happens often but I can't explain it by a certain trigger per say.

It's just confusing...I read about symptoms and don't want to feel like I am searching for cataplexy yet finally have a doctor who is actually interested in every aspect of my health and want to be on top of my condition. Any advice or information of cataplexy symptoms would be greatly appreciated!

#2 sunset

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Posted 08 October 2012 - 09:56 AM

Hi all...yet another cataplexy question! I have tried to search old posts but still coming up short from what I am looking for. I was diagnosed with N about 5 months ago and have only met with my new neurologist that I feel comfortable with once, so we're still discovering everything about my condition.

I have never had a cataplexy attack where I've lost complete control so my original neurologist diagnosed me with N w/o C and just said "I would know if I had cataplexy"....yet without knowing much about it I wasn't sure how I should automatically know what to expect. When I came back to him with a list of situations I've experienced he shrugged it off as a coincidence and told me I would never develop or have worsening cataplexy. Now with my new (more friendly and supportive) neurologist, he is interested in anything I could think of, so I am just not sure how mild cataplexy can be. There are so many things I never gave a second thought to until I read about in articles or on this site and I am just interested in any of this could be cataplexy related and if symptoms tend to worsen as time goes on...

I always thought I was really clumsy because I tend to trip a lot. Also, when I am talking to people or having a stressful day sometimes I will try to do things like turn on/off lights or sort through things and my hands just run into things like my fingers don't work to actually accomplish what I attempt.
I've never lost function from laughing too hard, but when I get nervous or excited I frequently will slur through sentences or not be able to get things out, which I just thought was out of talking too fast.
The most frequent yet hardest thing to explain is that I have these periods of an almost daze...it's like I stare off, my eyes cross, I am very still and quiet and I know that physically I can move but sometimes I just can't 'decide' to, if that makes sense. I just can't get myself to move my body or gaze. My head feels like its floating and my ears ring, sort of like when you stand up too fast and you feel super dizzy. This happens often but I can't explain it by a certain trigger per say.

It's just confusing...I read about symptoms and don't want to feel like I am searching for cataplexy yet finally have a doctor who is actually interested in every aspect of my health and want to be on top of my condition. Any advice or information of cataplexy symptoms would be greatly appreciated!


Hi, I was just told I have N+C on this 4th of Oct. I hope you never have Cataplexy as it is the worse illness. I can handle the N. as I just get sleepy and can nap all day but the Cataplexy has me trapped in my house. I had three attacks in public when I went out alone. I will not drive until the meds get control of the problem.

About 3 years ago I started sluring my words everyonce in awhile and was worried I was having a small stroke but I didn't. Then I would have my knees buckle slightly when I was walking. It progressed to my eyes moving back and forth while my knees could hardly keep me standing. Now I collapse to the floor when I am walking, standing talking and laughing. These attacks only last about 5 or 6 seconds. If I don't talk or laugh while standing or walking I am fine. Sometimes I have one sitting when I laugh. Mine progressed over the years to total collapse. I wonder if I had been aware of what was wrong with me early and treated I wouldn't have progressed to collapsing?

Hope this helps you.........I can only tell how it happened to me. Wishing you well.

#3 The Dreamer

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Posted 17 October 2012 - 09:49 PM

My sleep doctor asked me, "You are walking with friends, and one of them tells a really good joke. Do you fall to the ground?" I thought back to when I had friends and heard jokes.... "No," but before I could ask why something that didn't happen when I was 10 had any bearing on things now that I'm 40+....he said, "Then you don't have Cataplexy." the end.

Though there have been some pretty spectacular trips for seemly no reason, while walking with co-workers. Which I never thought about until now....that I have gotten my Cataplexy diagnosis. Where I was walking home from the pharmacy ... angry. I had felt an urge to sit while I was there, but decided to trudge home sulking....when I could feel things going down, and sought out a nice spot to crash. After a while, I fell asleep and then when I came to, still didn't feel like moving, didn't know how much time had passed and wasn't sure if I should call 911 or not. So, I used my 5-Star, and they decided to get me an ambulance.

Then after that....doc prescribed something he read online that might help with Cataplexy (but apparently not the part where the same drug can also make Cataplexy worse)....and I started tripping much more and other close calls.

Though I had other things that have been described as mild cataplexy by others (as well as other people saying they saw me having mild cataplexy), which is why I had brought up the question of whether I had it or not in the first place.

I stopped having friends and hearing jokes when I was young, because they would tease me that my face did weird things....but I still don't know what that is. I'd also get in trouble for making a face, when I was suppressing anger, that I also still have no idea what that was.

So, it was really strange laughing when I was at NN Conferences....I don't know what I looked like to others, nobody has said anything....probably because the laughter affects all of us, some more than others. I just know that my head get's heavy and I need to hold it up with my hand.

I also learned years ago...when somebody with a new kid, finally offered him over to me to hold.....I suddenly felt my arms go weak...and worse, I couldn't talk. But, I never connected that as being Cataplexy....it was before the accident where I microslept while doing 75mph....which was way before I knew about sleep disorders, so I didn't figure that's what probably happened until some 12 years after it.

And, there's still all kinds of other things that I wonder if it was mild cataplexy or not....

The Dreamer.

#4 Hank

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Posted 18 October 2012 - 09:31 AM

Hi all...yet another cataplexy question! I have tried to search old posts but still coming up short from what I am looking for. I was diagnosed with N about 5 months ago and have only met with my new neurologist that I feel comfortable with once, so we're still discovering everything about my condition.

I have never had a cataplexy attack where I've lost complete control so my original neurologist diagnosed me with N w/o C and just said "I would know if I had cataplexy"....yet without knowing much about it I wasn't sure how I should automatically know what to expect. When I came back to him with a list of situations I've experienced he shrugged it off as a coincidence and told me I would never develop or have worsening cataplexy. Now with my new (more friendly and supportive) neurologist, he is interested in anything I could think of, so I am just not sure how mild cataplexy can be. There are so many things I never gave a second thought to until I read about in articles or on this site and I am just interested in any of this could be cataplexy related and if symptoms tend to worsen as time goes on...

I always thought I was really clumsy because I tend to trip a lot. Also, when I am talking to people or having a stressful day sometimes I will try to do things like turn on/off lights or sort through things and my hands just run into things like my fingers don't work to actually accomplish what I attempt.
I've never lost function from laughing too

hard, but when I get nervous or excited I frequently will slur through sentences or not be able to get things out, which I just thought was out of talking too fast.
The most frequent yet hardest thing to explain is that I have these periods of an almost daze...it's like I stare off, my eyes cross, I am very still and quiet and I know that physically I can move but sometimes I just can't 'decide' to, if that makes sense. I just can't get myself to move my body or gaze. My head feels like its floating and my ears ring, sort of like when you stand up too fast and you feel super dizzy. This happens often but I can't explain it by a certain trigger per say.

It's just confusing...I read about symptoms and don't want to feel like I am searching for cataplexy yet finally have a doctor who is actually interested in every aspect of my health and want to be on top of my condition. Any advice or information of cataplexy symptoms would be greatly appreciated!


Cataplexy was like solving a mystery for me. I was certain I did not have it- I had just lived with it and around it for so long that I just could not see it. It was like it was hidden in plain sight. And people had called it so many things for so many years, I had a lot of lables placed over my symptoms. Here are a few:

when I startle, my knees buckle and I do a slow motion fall. I thought I was just "jumpy" or "over-reacting"

when an object is coming at me, my hands don't work right and I tilt to the right (if sitting). Examples, my hands fumble if catching tossed keys, a pen or catching a ball or frisbee. Nothing major just fumbly.

when I laugh really hard, my head tilts forward and I am laughing so hard I cannot laugh and my eyes close.

mild laughter, joy, sadness just makes my legs and arms tingle- like goose bumps without the bumps.

beautiful music- like Mozart or Beethoven- makes my head a face tingle.

sometimes my face goes slack and people randomly say that I am angry, when I don't feel angry at all. My slack face makes me look frowning or scourning. I still cannot put a trigger because I do not know when it happens unless someone tells me I look angry. That is annoying and if they keep pushing it, that does make me angry and then my face is no longer slack. So I look less angry when I actually am angry- frustrating.

if I am in a hurry, like at the airport, I just cannot move fast and start to slump my shoulders and trip. So the faster I hurry, the slower I get. I try to give myself lots of time at the airport- I move so much faster when I am not in a hurry. And then I am early.

I get a little weak in the knees after exercise. I have had falls from Cataplexy that I could never explain- I just had no idea why I fell- until I was diagnosed with Cataplexy.

So, if you have mysteries that you just cannot solve, consider it. I worked with a psychologist for the purpose of discussing all those unexplained things and trying to find a common thread- I finally found Cataplexy had been hiding in plain sight from age 9 to 45. Mystery solved.

#5 The Dreamer

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Posted 24 October 2012 - 01:34 PM

sometimes my face goes slack and people randomly say that I am angry, when I don't feel angry at all. My slack face makes me look frowning or scourning. I still cannot put a trigger because I do not know when it happens unless someone tells me I look angry. That is annoying and if they keep pushing it, that does make me angry and then my face is no longer slack. So I look less angry when I actually am angry- frustrating.

if I am in a hurry, like at the airport, I just cannot move fast and start to slump my shoulders and trip. So the faster I hurry, the slower I get. I try to give myself lots of time at the airport- I move so much faster when I am not in a hurry. And then I am early.

I get a little weak in the knees after exercise. I have had falls from Cataplexy that I could never explain- I just had no idea why I fell- until I was diagnosed with Cataplexy.

So, if you have mysteries that you just cannot solve, consider it. I worked with a psychologist for the purpose of discussing all those unexplained things and trying to find a common thread- I finally found Cataplexy had been hiding in plain sight from age 9 to 45. Mystery solved.


Yeah....I often gotten into trouble as child for making faces when I was sure that I wasn't. And, it didn't matter if I was feeling angry on the inside or really happy...the result was the same.... since all problems are cured by beatings. Teachers said I might have a ADHD, forget the drugs....beatings will fix that. I once got surprised in class when a classmate grabbed me...this resulted in me knocking all the desks and chairs over in the room. I knew what was coming.... They continued on after I turned 18 too....I didn't leave home until I was nearly 21. And, when I would visit in my 30's, I would still flinch if my dad made any sudden moves.

Also, looking back I realized that I was seeming trip and scrape up my hands and such often when I'm in a hurry. I'd often find something unevenness in the pavement to curse at...though during the summer when my cataplexy was getting worse...I started having trouble finding flaws in the pavement to blame.... The only thing my sleep neuro asked me when I asked if I had cataplexy, was "if you're walking with friends and somebody tells a really good joke do you laugh and fall to the ground". But, I never thought about all the times I would trip/stumble while walking with co-workers....until now. Though I wasn't laughing when I did that....since that was during the almost 30 years that I didn't laugh.

I suppose it explains why my voice would fail me when trying to direct co-workers to the meet up point after a building evacuation. I was made the fire captain for the section of the office I worked in because of the cubicle I was in (and being on the office health & safety committee....which didn't exist until after a co-worker died in the office.

Or that time way back when a friend had a baby, and she gave him to me to hold...and I could feel the strength draining out of my arms, and to make it more terrifying....I couldn't talk.

Makes me wonder if I might have had all this since I was around 10....to only now finding out at almost 44.

The Dreamer.

#6 sleepyk

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Posted 28 October 2012 - 11:08 PM

I completely agree that uncovering cataplexy is like solving a mystery, putting all the pieces together. We all live with it for so long we don't know it's not normal.
I thought everybody got weak in the knees when they heard a good joke. And everybody trips now and again, I just thought I was particularly clumsy.
It wasn't until after diagnosis, and reading about others' experiences on these forums, that I began to realize what was going on.

I slur my words, and my face feels like I was just at the dentist's office, and the novacaine is just beginning to wear off. My tongue feels fat and clumsy.
My knees buckle, and my ankles, which results in a stumble or stagger, but only on occasion do I fall. I think it's from years of learning how to keep balanced.
I drop things, alot. ALOT. I put my keys on a ring, an actual piece of jewelry, so I can wear them and not drop them. I spill stuff, my pen jumps when I write.
High emotions make me weak. I also stare off into space in a paradoxically aware yet unaware state.

If there is one thing I have learned so far, it's that most doctors' knowledge of N is limited to the paragraph they read on it in a textbook 20 years ago. These forums are far more useful in figuring out and understanding N.

#7 Kimpossible

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Posted 12 November 2013 - 04:00 PM

I have trouble when I get really angry.  I feel physically weak and cry.  I can not get angry and not cry.  It's like I don't have the energy to control it.  This always makes me look like the worst, pathetic employee. like a spoiled brat who cries to get her way.  

I also have this weird inability to hurt people.  I find it physically difficult/impossible to physically hurt someone.  I have a friend who likes to be slapped (I know, don't judge!) and when he asked me to do it, I was paralyzed.  I couldn't even explain it to him because the words wouldn't come out.  All I could do was shake my head.

Is that cataplexy?  I have definitely never had the laugh-and-fall-over problem.  Although I can laugh so hard I sometimes pee in my pants a little.  LOL.



#8 sk8aplexy

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Posted 12 November 2013 - 05:35 PM

"I have a friend who likes to be slapped (I know, don't judge!) and when he asked me to do it, I was paralyzed.  I couldn't even explain it to him because the words wouldn't come out.  All I could do was shake my head. Is that cataplexy?"

My thoughts are 'Yes, that is Cataplexy.'

Cataplexy can come on, from some of the weirdest, and oddest, interactions.



#9 Hank

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Posted 07 August 2014 - 05:25 AM

Freezing up is kind of the opposite of paralysis.

 

For me, when C occurs, I will know exactly what I want to say, I am just unable to speak. It is very frustrating to want to speak but be physically unable.

 

It sounds to me like you are identifying with an interpersonal issue rather than a symptom.



#10 Hank

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Posted 07 August 2014 - 08:47 AM

K- I get concerned about you. Sometimes it seems like you are revising your story to meet the description of symptoms.

 

This, along with your extensive research and theorizing leaves me scratching my head.

 

When I was being diagnosed, I did not know I had cataplexy. I had a long series of accidents, injuries and embarrassing moments that made no sense. So I started working with a PhD who helped me examine some of these incidents. He became my sounding board for what was normal and what was not.

 

So for me, these incidents- ski accidents, a broken arm, loss of speech, falling over when laughing, my head flapping around on roller coasters- started to present a clinical picture, rather than a series of awkward events.

 

I am concerned that you are taking parts of your life and squeeze them into the definition of cataplexy.

 

I think it is very important pre-diagnosis to be very objective about these events. I think it is very important not to over-identify with an illness that has not yet been diagnosed.

 

So, I could be way off base. However, that is what my experience and my gut tell me.

 

I did not want to have cataplexy. I was devastated at the possibility. I was happier at the time believing that were a chain of random events. I did not want to have this illness.

 

I did not even begin to look at the small stuff- like interrupted speech- until well after the big stuff was settled- like almost being killed from a dangerous fall. And that did not come until months after a formal diagnosis.  

 

With small stuff alone like you have described, you will not be diagnosed with cataplexy- especially not without 2 SOREMs on an MSLT. It fits too much into normal range. Many people without cataplexy sometimes experience the same things as you have described.



#11 Hank

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Posted 07 August 2014 - 01:36 PM

Well, what you consider to be in the grey areas seems a little more clear than what you have mentioned.

 

I cannot tell from what you have written if you were attempting to self diagnose with "mono, or vitamin deficincies, lymes, ischemic strokes" or if your doctors actually considered and tested you for these things.

 

So, for me, your overall posts have the tone of attempting to fit events into the diagnosis of cataplexy. What I would suggest, if focusing on the symptoms and events and becoming an expert on describing them. Then, take those descriptions to your doctor who will be responsible for diagnosing you.

 

It is the "self-diagnosis" aspect of your posts that is difficult for me.

 

I am not trying to shut you down or minimize your experience. I am trying to re-direct you to a path that I believe would be more beneficial for you. I would suggest removing from your thoughts the goal that you will diagnose yourself. Instead, focus on becoming a very well informed patient who can provide an accurate history and description for your doctor.



#12 Hank

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Posted 07 August 2014 - 05:51 PM

I get in now. It has just been hard to tell. You have been through the wringer too.



#13 Hank

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Posted 07 August 2014 - 11:20 PM

Forget the list. Just say what happened. What occurred- objectively- just the facts. Leave out all your theories and hypotheses. Ditch the vague references that don't say anything. Leave out  your opinions about what it must have been. Don't try to squeeze it into a case definition.



#14 Hank

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Posted 08 August 2014 - 12:01 AM

That's what I am talking about. Nothing you just wrote helps me to understand your  your symptoms. Your theories are more detailed than your descriptions. It is all very impressionistic but not very substantive.



#15 sk8aplexy

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Posted 11 August 2014 - 03:29 PM

I want to chime in.  Kriqit, I think I can relate a lot with your approach and perhaps experience within the realm of doctors...
For most of my life I just adjusted as best that I could, however I could to whatever, that being a lot of matters from headaches to Cataplexy. 

I'd have entirely limp arms when tickled as a kid, through teens I didn't have such but tiredness and other things progressed, then I began collapsing around 20.

By 28 I was collapsing way too much and went through major wringers, for a good year, involving major escalation of my Cataplexy while attempting to tolerate a VPAP ASV (advanced CPAP for 'Central Sleep Apnea' - I have minimal 'Idiopathic Central Sleep Apnea' -I discovered in the process).  Was given a 'Probable N w/ C' diagnosis, which includes 'Probable' because my 'Mean Sleep Latency' was 9 minutes and not under or at 8 minutes.  The specialist said I definitely have Cataplexy, which was after I walked in with coffee (after 10 days of no coffee prior to MSLT) and he commented that I looked happy to have the coffee...

Finally though (as stated above), I got some answers when I went to Mayo Clinic in MN.  Some of it (maybe the questions) is still pretty wide open though (in some ways); if that makes sense? 

Throughout my life, there's been many random health symptoms/things that have just been really hard to actually note, or pick up on; allergies for instance, tripping over my own feet as a kid (dragging feet), neck sensitivities and so much more.

One of the biggest issues I have, is communicating accordingly or at all with many of the doctors I've been to.  For some reason, I just can't do it, maybe it's because I am a skateboarder (had to state such here) in his early 30's...
I've gone in with different approaches; for example,  only answering the specific question/s asked and/or biting my tongue when whatever I want to say is in regards to my own perspective (my own thoughts, involving what I've researched, especially).  I find that there's always so much more that I really need to say, so that I'm covering what connects; so many angles or maybe I should say dots, where lines obviously connect.
I'm always very very interested, and trying to understand, or simply get confirmation.  What also seems to get me buried often, is that I am open to recommendations/suggestion but not necessarily at all interested in the medications, for some reason (obvious ones) that (not wanting meds) is not so accepted/able.

 

Either way, I know that I've come a long long way and finally (for a handful of years now) have a name and (to a large extent) something (semi) explainable, if need be for such.
 

 



#16 Hank

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Posted 13 August 2014 - 10:33 AM

If it did not add up to complete cataplexy, then it was unlikely to have been cataplexy. If you had experienced cataplexy- especially rebound cataplexy- it would be much simpler for you to describe. There is nothing like it and it is very, very clear. The fact that you are still uncertain suggests that it is not cataplexy. I hope that is a relief to you.

 

Bradykinesia can be a side effect of discontinuation, and that sounds more consistent with what you have described.

 

A month is not a lot of time to have built up a strong dependence, but anything is possible.

 

I would suggest that you not focus on figuring out what is normal and let your doctor decide that. Being objective and clear about what you are experiencing in generally the most helpful to a doctor.

 

I hope your appointment goes well.



#17 Hank

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Posted 13 August 2014 - 08:23 PM

And Hank, I've long been wondering why my oral meds have always been so cruddy to rely on, or grow tolerant to. I'll bring that up.

What does this mean?



#18 Hank

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Posted 13 August 2014 - 08:45 PM

What oral meds. It is really hard to know what you mean when you are vague.



#19 Hank

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Posted 13 August 2014 - 09:13 PM

The vagueness is hard for me. But you seem cool with it, so I will not try to understand. I was interested in helping.



#20 Ferret

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Posted 13 August 2014 - 10:30 PM

Your Doctor says you can keep using the Imipramine? That's a REM suppressant and a sure fire way to nullify your sleep study and any Sleep Specialist worth their salt KNOWS that.

 

Actually, I don't understand why I keep trying to help you because you are continually spinning in circles. So, I'm gonna stop. Buhbye.