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#1 exanimo

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Posted 17 April 2013 - 03:29 PM

I have seen a lot of posts regarding questions about cataplexy; what it is, what it isn't, could I have it, etc.
So my goal in this topic is to help those with these questions. I am not a doctor, and I can only speak of my experiences and give resources i have personally encountered. So I would love if others would add to this thread so that we can help others who may have questions about it.

 

So, what is Cataplexy?

 

"Cataplexy is an abrupt but temporary loss of muscle tone or strength that results in the inability to move and always occurs during wakefulness. Symptoms of excessive daytime sleepiness may be present for years before symptoms of cataplexy develop. About two thirds of patients with Narcolepsy have Cataplexy. The following events may be triggers for cataplexy:

  • Sudden intense emotion, such as laughter or anger (most common trigger - and most commonly defined trigger)
  • A heavy meal
  • Stress

During severe cataplexy attacks, muscle reflexes are completely absent during a cataplectic attack." Note: A person may appear to be asleep during these severe attacks, especially if the attack is prolonged. "Cataplectic attacks can be very minimal and appear as passing weakness or affecting only the eyelids and face." Note: Minimal attacks can affect any small group of muscles, neck, face, arms, legs, knees, etc. "They may, on the other hand, be so severe that they weaken the whole body. In the most secvere form of cataplexy, attacks can recur repeatedly for hours, or even days." Note: My interpretation of this, is not that they are saying persons with cataplexy may have a loss of muscle tone for days, but that attacks can repeatedly occur, severely or minimally, over the course of days. "Abrupt withdrawal from certain drugs used to treat narcolepsy, notably clomipramine, can trigger these severe symptoms. 

 

Cataplexy may have the following characteristics:

  • Most attacks last fewer than 30 seconds and can be missed by even skilled observers. However, in severe cases, a person may fall and remain paralyzed for as long as several minutes.
  • Typically the patient's head will suddenly fall forward, the jaw becomes slack, and the knees will buckle. Note: Again, this may not be the case for everyone. Personally, my head never abruptly falls forward, rather it kind of bobs, or slowly falls toward my chest. 
  • Speech may become suddenly loud or broken and stutter-like. Note: Many on the forums here have mentioned slurring of the words as well. These may not always be attributed to cataplexy though, they can also be attributed to EDS, when a person is very tired and sleep deprived (as many with N are). 

What it isn't

 

Cataplexy is not a disorder in itself. There may be rare cases of it, where it is not attributed to Narcolepsy. However, the majority of people who experience Cataplexy, have Narcolepsy. It is one of those rare symptoms that can only be attributed to one thing: Narcolepsy. This may be because of the pathophysiology. Cataplexy, like most N symptoms, is the body's inability to regulate sleep-wake cycles properly. When you are in REM sleep, your body 'paralyzes' your muscles so that you cannot move (some believe it is so you don't act our your dreams.) During cataplexy, the body is getting signals mixed up and mistakes wakefulness for REM, thus paralyzing the muscles temporarily. 

 

Cataplexy is not a person abruptly falling asleep. I think this is where the media got mixed up. Movies or book often portray PWNs as falling asleep without warning, doing everyday activities like talking or walking. As PWNs know, this is not usually the case. We have some warning, and EDS generally comes on strongest during periods of inactivity. But, Cataplexy, does appear, in it's typical or severe form, to be a person suddenly falling asleep. They can be talking and bam, they're on the ground, eyes shut and unable to respond. But, they are not asleep. They are completely conscious and can hear and feel their surroundings, but their muscles are not responding. 

 

Things to Consider

 

Could you have cataplexy? Sometimes, the answer is obvious, while other times, people are not so sure. Doctors are sometimes wary of giving the diagnosis of N w/C because there is no way to know unless it is seen. They cannot take a blood sample and tell you that yes, the results say you have cataplexy. Other Doctors only know the textbook definition. If you don't fit it, well obviously you can't have it. It's important to be your own advocate here, and to ask as many questions as possible. If your Doctor doesn't listen, you have a problem. 

 

Medications. This is something I only thought of recently, when wondering why I don't remember Cataplexy up until a few years ago. I have a mild case, I have only ever fallen once, and the attacks don't last very long. I have never experienced full body paralysis from Cataplexy. But, I do experience weakness in my neck, face, arms, and knees. I have also have the repeatedly occuring cataplexy over a few days. Though, they were mild cases, eventually they led up to my falling down some stairs (my knee buckled, I fell on my butt). But, I was diagnosed with Depression when I was 13. They put be on antidepressants, which I took on and off. I took them consistently for about 4 years though (from age 15-18). I never noticed cataplexy until I was about 20. But then I did some research, and anti-depressants are a common treatment for Cataplexy. Whether I may have had it and was unknowingly treating it, is impossible to know. But it is an interesting idea. 

 

It's important to remember that many with Narcolepsy go years before diagnosis, and through that time many are misdiagnosed with various illnesses. Those without cataplexy, or milder cases of it, are often diagnosed with illnesses that relate to fatigue or chronic tiredness, like depression, chronic fatigue, anemia, etc. While those who have severe cataplexy, or experience hypnagogic hallucinations often, may be misdiagnosed with schizophrenia, epilepsy, or other seizure disorders.

 

Medications for all of these may interfere with the presence of cataplexy, but especially SSRI's. Which may be prescribed for any number of things like depression, anxiety or mood disorders.

 

How emotional are you? Since strong, intense emotions are often the main trigger for cataplectic attacks, those who are emotionally distant or do not experience emotion often, may not notice cataplexy. I think that to some degree, this might be me. I wouldn't say I'm completely unemotional, but I do reserve freedom of emotional expression for times when I feel comfortable. I was in an especially happy and goofy mood those few days when I experienced repeated occurances of cataplexy. 

 

So, that is what I've got. I hope that some might find it helpful, and I encourage others to share information, or correct me if I made a mistake. Again, I can only work from my own perspective here! So please help me to create a place where others can find information regarding cataplexy and what it entails. There is a specific forum for cataplexy times here on the message boards, so if you haven't, check it out too! I put this here as I have noticed an influx in questions. Not that I am discouraging anyone from posting their own questions, but that this is here for anyone who might want to look around before asking. :) 

 



#2 Mmartens3

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Posted 17 April 2013 - 03:38 PM

Thanks for sharing, I really appreciate you taking the time to post such helpful information!

#3 sk8aplexy

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Posted 17 April 2013 - 07:07 PM

Nice Exanimo, this seems like an appropriate topic and perhaps one that should be 'easy to find, upfront' on the site considering how often the question is raised.

I'd like to add my own take and experience with it.

 

For me, I had no name for what either the Narcolepsy or Cataplexy was, till around 28 years old. 

Now, at 33, I have spent years researching, analyzing, thinking back on the past and paying close attention to both Narcolepsy and Cataplexy.

Cataplexy for me was what finally, basically forced me to seek help; I can not say anything besides lifestyle changes and knowledge has helped though, yet others do seem to find some at times.

From what I've learned from reading on forums, articles, research and medical journals; each one of us (just like how Narcolepsy symptoms can be, or are for each of us) experiences different variations of Cataplexy triggers, as well as different degrees of how the Cataplexy reacts. 

Reading others experiences with both Narcolepsy and Cataplexy, is what helped me grasp it and have any understanding to it, beyond being able to describe it in neurotransmitter or REM intrusion form. 

As far as Narcolepsy goes, I describe it as an inability to get restorative sleep causing a plethora of difficulties.

Cataplexy, I describe as a minimal muscle flicker or weakness, to complete temporary muscle paralysis, always triggered by emotional engagement and/or interaction/s which most often have to do with pleasure/s.

 

'Clear-cut Cataplexy' is a term used often within the medical realm, I'm not exactly sure what the definition may be, but my interpretation of it is that; one experiences a sudden muscle flickering or ragdoll body effect, perhaps collapsing into an awkward position only after a triggering (event/interaction/emotion), but remains completely conscious and able to think, also hear and sometimes see.

 

During Cataplexy, in severe form (when completely paralyzed), there is no muscle reflex.  That is to say, if your knee cap were hit (like doctors check with the little mallet), there is no reaction.  Such is the 'ragdoll' effect.  Also, the respiratory muscles/system that keeps you breathing while asleep, kicks in and you breath slowly (it can be hard to note whether one is breathing).  Some who experience severe Cataplexy will actually fall into deep sleep, and remain asleep for even hours; there are stories of people ending up in the morgue, alive due to this condition... 

Cataplexy is said to be harmless, as long as the persons breathing is not constricted and/or during the fall, or attack, there is no physical injury.  That is a good thing, at least right.

 

Below is some of my experiences with it.  It can be severe for me.  So, I must live in an odd way, as it can be dangerous and certain environments/atmospheres create real risk, so I choose carefully what/who/how to interact and engage with as well as where/when/why...  The misunderstandings are frequent and broad; such is unfortunate, but we all must live and learn, however possible right.

  • As an infant, according to my Mother, at times while being tickled I'd begin to stare off with a blank look, stopping laughing and/or responding to the tickling.  [Had a pretty dramatic first few months which involved 9/10ths removal of my Pancreas for Severe Hypoglycemia, prior to it I'd had some seizures which were considered Epileptic until the Hypoglycemia was finally noted.  So throughout growing up I was aware of a possible prone-ness or possible pre-disposition to Epilepsy yet what started occurring later did not fit Epilepsy.  Having the Epilepsy test/s done at 31, showed no sign of Epilepsy...]
  • As a young kid, I can remember when tickled hard in my belly, while reacting, laughing very hard, my arms would be limp and would not react, I could turn my body but not move my arms. [No one thought anything of it, I do remember stating, "I can't move my arms, stop it, hahaha"...]
  • Around 20 living at home with my Mother, which has most always been and remains my most comfortable setting.  Joking around and/or perhaps handing off some food I'd cooked on the occasion (both being related to emotional pleasure) resulted in an intense body heavyness/weakness/flickering which would require that I lean against the wall or doorway and sometimes from there I'd end up awkwardly on the ground, and/or dropping the dish of food.  [For years I never had an issue with Cataplexy away from my home, there was for me some odd boundary or guard of my own, that limited it happening perhaps around my friends and/or in public, as it seemed to happen only at home.  And, it did not happen very often, a few times every year or maybe a few times within a couple of months, here and/or there.  What I can say though is I was aware of it, and I'd learned to adjust accordingly as best that I could.]
  • By 26 it had begun to happen more frequently, but it had sort of changed into a lesser form.  Skateboarding began to trigger it, occasional tricks I'd land (due to the pleasure/happiness) would cause my head to fall forwards and at times peoples hollering (causing some sort of emotional reaction) in regards to the trick I'd just landed, triggered such.  [It was not stopping me though, as I just let my head down briefly and continued on.]
  • At 28, I'd realized there was much more going on and involved with what was happening.  I'd been collapsing much more over the past couple of years, here and there.  It had gotten to about a handful of collapses every few months and who knows how many minimal Cataplexy attacks (I tend to only count, and/or actually note to self, the collapses).  After a week and a half in Mexico with a group of friends (a good friends wedding was why we were all there) I was tired and was having many minimal Cataplexy attacks, I expected I may collapse at some point and I did.  Luckily I'd warned the good friend who I was with, that I have some odd matter, but mainly that he should not worry if I suddenly, briefly collapse.  He'd had the poo's for days and decided to try going for a walk, so on the walk mid street he suddenly paused and looked super awkward!  I made it to the other side of the street to then collapse, getting up a few seconds later and telling him to go take care of himself.  [This was the night I got online at an internet cafe and did a google search of "laughing causing paralysis" which began me down the road of discovery.  Took me a good two years to begin to accept, or actually understand the entirety of, Narcolepsy with Cataplexy and now it is beyond apparent; especially in hindsight...]

- Some frequent triggers for me are

  • Being asked on the street unexpectedly for directions or (especially) for change.
  • Someone unexpectedly smiling at me.
  • Silly-ness is a frequent trigger (for instance, witnessing idiots with road rage as I'm walking around).
  • My cats being way too cute and/or silly.
  • Being told compliments regarding the food I've prepared or just handing off the food I've prepared to someone.
  • Certain funny shows (Curb Your Enthusiasm, Parks and Recreation...).
  • Skateboarding or having a break away in a hockey game (neither of I do hardly any longer)...
  • There's been a few times were over exerting myself physically, has caused Cataplexy, but this seemed also related to the activity involvement so there was some emotional element at play too.

- Some ways Cataplexy occurs for me are

  • Bobbing of the head forwards with a loss of my facial muscles (spasm like, of the face) feeling a flickering of the muscles throughout my neck and head as such occurs.
  • My words can be mumbled as if I were drunk (this is what happens trying to respond directions or that I have no money to give, along with the head falling forwards).
  • My entire body freezes or pauses (perhaps dropping whatever may be in my hand/s) and sometimes I regain my muscles before collapsing but sometimes I collapse gradually or at other times quickly (if there's no wall or doorway to lean on, I immediately am gauging where to fall -Skateboarding could not have prepared me better for, or helped me adjust to having, Cataplexy-).
  • Near instant/immediate collapse occurs now and then (sometimes often).

- Key things for how I deal with it are:

  • Remaining as stress free as possible.
  • Never fighting/resisting it and being very conscious of my own self along with who I was around as well as what/where/atmosphere. 
  • Knowing that if I get myself down to the ground ASAP that chances are much better that the Cataplexy will dissipate quicker and/or be lesser, in fact doing such when I am weak and in likely to trigger circumstances (while and/or after) really strengthens me...

Cataplexy is never completely predictable, yet can be somewhat anticipate able, if you are very aware of yourself and the surroundings -that is a mouthful though-.

There are times I'd expect it to occur when it doesn't and there are times I'd expect it to, and it does. 

I think that only the person with it can actually understand it and/or begin to grasp it, I do not think it can be beaten though, entirely; unfortunately.

It is, what it is. 

Hope this helps someone!



#4 h.wynn

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Posted 18 April 2013 - 10:14 AM

Now I am confused. I laugh. My nees, face, and neck goes. I fall to the floor. I am awake the hole time. Afew seconds latter I just fine like it never happend. Thats cataplexy.

Nothing is going on no jokes no anger. I sit down and i cant move. I can open my eyes. Ican breath. I am awake. It lasts for sevral min. ihave to fall asleep and wake up for it to stop. Is this cataplexy or sleep paralysis?

I am sleeping. I wake up. I then realize I did not wakeup. I a awair that I am still sleeping. this happens again 3 or 4 more times befor I wake up for real. Is this a dreem, sleep paralysis, or a hallucination?

I'm in my bed going to sleep. The cat jumps on the bed and atacks me. I kill the cat. I dont own a cat. There is no dead cat. I get up and I can feel the pain from the atack. I do not know if I am awake or asleep. Is this a hallucination or a dreem?

I thought I new at one time but with what every one says here I dont know anymore.

#5 sk8aplexy

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Posted 18 April 2013 - 11:01 AM

"I laugh. My nees, face, and neck goes. I fall to the floor. I am awake the hole time. Afew seconds latter I just fine like it never happend. Thats cataplexy."

--> Yes.

 

"Nothing is going on no jokes no anger. I sit down and i cant move. I can open my eyes. Ican breath. I am awake. It lasts for sevral min. ihave to fall asleep and wake up for it to stop. Is this cataplexy or sleep paralysis?"

--> No jokes, no anger... That sounds a little, somewhere, in between Cataplexy and Sleep Paralysis?  Automatic Behavior and/or Sleep Attack mixed with Sleep Paralysis?

"I am sleeping. I wake up. I then realize I did not wakeup. I a awair that I am still sleeping. this happens again 3 or 4 more times befor I wake up for real. Is this a dreem, sleep paralysis, or a hallucination?"

--> This happens to me too and sounds like 'Hypnagognic Hallucinations/Dreams' mixed with 'Sleep Paralysis' (such is common, I believe, for us with N).

"I'm in my bed going to sleep. The cat jumps on the bed and atacks me. I kill the cat. I dont own a cat. There is no dead cat. I get up and I can feel the pain from the atack. I do not know if I am awake or asleep. Is this a hallucination or a dreem?"

--> This sounds like another sort of 'Hypnagognic Hallucination/Dream.'  Although, feeling the pain from the attack I can't relate to.  Perhaps some shock and/or discomfort I can relate with...

 

"I thought I new at one time but with what every one says here I dont know anymore."

-->  I think that only the person with it can actually understand it and/or begin to grasp it, and that is for themselves as to how their own individual case of N &/or N w/ C is; as each one of us (just like how Narcolepsy symptoms can be, or are for each of us) experiences different variations of Cataplexy triggers, as well as different degrees of how the Cataplexy reacts for each of us, individually.

 

*I am not a doctor and only speak from my own experiences with my condition/s, and lots of reading others experiences, articles, research, medical journals, along with some conversations with experts in the field of N w/ C...  Don't let it rattle you, it is whatever it is and will be.  N, as well as N w/ C, is still very misunderstood as a whole, sleep is (and a lot of other things are) as well...*



#6 Xera

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Posted 26 December 2014 - 06:35 PM

Thanks for this post. I know it is old but I'm digging through the archives trying to figure out whether or not to tell a doc yes or no to cataplexy. This helps somewhat.

I definitely don't go rag doll. But I can tell occasionally that my knees sometimes aren't going to hold me up when I get a particular wave of tingling. I haven't noticed a particular emotional trigger for those times though. It's not like I'm laughing and I go down, but sometimes it's in response to stress or happiness. Sometimes it's just out of the damn blue. I've been a wreck the past 2 days with the nodding and wobbling as I get tired and need naps. This says not cataplexy to me. Maybe I'm just exhausted?

The possible cataplexy would be things like the story of the first time my husband kissed me. I wasn't expecting it and was so thrilled a wave of tingling rushed through me from head to to and all I could manage was to make a little meep sound. At first he thought he'd misread the queues and I didn't want him to kiss me but we got that sorted out quickly enough once I could move and talk again.

I have memories of laughing with my mom, grandma, and sister, and all of us laughing so hard we were all rolling around on the floor because we couldn't stand... this was normal for us. Since then I seem to have lost my sense of humor. I laugh, haha, but don't stand around getting that... tingly joy hilarity. It also gave me ER worthy asthma attacks, so... self defense I think.

I'm one of those high strung people who jump a mile and drop things/fall down when totally surprised. As kids we used to hide and then scare the bejeezus out of each other and they knew they got me good when I screamed and fell down so I couldn't chase them. Same would happen when they'd put ice down my back. My husband is a prankster but I let him know pretty early on that I was NOT AMUSED by jokes that involved surprising me so he teases me other ways. He was therefore unaware of my tendency to fall... he just remembers my tendency to be pissed off at him for days...

And I'm a klutz in other ways, dropping things, running into things, falling over, falling down the stairs when I'm the only sober person at a party, etc.

#7 Ferret

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Posted 26 December 2014 - 11:01 PM

You have cataplexy Xera.

Sk8aplexy will relate to your experience of your first kiss with your (now) husband...it happens to him.

The kids did indeed "get you good" when they startled you.

 

I also relate to Sk8aplexy's story of being more comfortable at home and, therefore, more cataplexy occurs at home. We let our guard down at home because we are usually with people who understand and know how to help.

It's not unusual to not want to put yourself at risk and keeping a really tight rein on your emotions is one way of doing it. I have thoughts that this may not be a healthy way to deal with it...kind of like stuffing down anger and ending up with other health issues. We are not robots and shouldn't have to live without emotion.

There's a balance in there somewhere.



#8 crumples

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Posted 28 December 2014 - 03:48 PM

I posted recently about having "gone all the way down" (i.e. having my first full collapse cataplexy). Since then, I am experiencing it daily, and it has been especially bad this week since we've had lots of family and friends around who are quite hilarious, and I've been extra tired from all of the holiday activities. Although, it has been good now that everyone has seen it happen and knows not to freak out. It's been good for me too, to really practice "how to fall," since I've been in a comfortable setting (my home or a family member's home) every time. I haven't hurt myself yet, but I did fall into my pantry yesterday which did not feel good, and hit my knee on the tile. 

 

I'm curious...did anyone else have this experience with cataplexy? That is, once you had your first full collapse, did it happen more frequently after that?



#9 exanimo

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Posted 28 December 2014 - 06:11 PM

I posted recently about having "gone all the way down" (i.e. having my first full collapse cataplexy). Since then, I am experiencing it daily, and it has been especially bad this week since we've had lots of family and friends around who are quite hilarious, and I've been extra tired from all of the holiday activities. Although, it has been good now that everyone has seen it happen and knows not to freak out. It's been good for me too, to really practice "how to fall," since I've been in a comfortable setting (my home or a family member's home) every time. I haven't hurt myself yet, but I did fall into my pantry yesterday which did not feel good, and hit my knee on the tile. 

 

I'm curious...did anyone else have this experience with cataplexy? That is, once you had your first full collapse, did it happen more frequently after that?

 

 

I'm glad that you've been able to 'practice' falling (as horrible as that may sound!). 

 

I don't think my cataplexy worsened after I had my first 'fall' (though it wasn't a full body attack - it just made my knee go out from under me). But I did NOTICE it more. I paid more attention to cues, I suppose. 

 

But I do notice it more frequently when I'm tired or stressed. Also there was a period of time (right before my first fall) where I was in an extremely good mood - and quite giddy for a few days. I noticed the attacks becoming more frequent during those few days - and somewhat worse (or what I call sequential - one attack of weakness, I can't calm myself down completely, another, etc). Then eventually I landed on my bum on the stairs (when my knee gave out). 



#10 Xera

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Posted 10 February 2015 - 01:37 PM

Thanks for this post. I know it is old but I'm digging through the archives trying to figure out whether or not to tell a doc yes or no to cataplexy. This helps somewhat.

I definitely don't go rag doll. But I can tell occasionally that my knees sometimes aren't going to hold me up when I get a particular wave of tingling. I haven't noticed a particular emotional trigger for those times though. It's not like I'm laughing and I go down, but sometimes it's in response to stress or happiness. Sometimes it's just out of the damn blue. I've been a wreck the past 2 days with the nodding and wobbling as I get tired and need naps. This says not cataplexy to me. Maybe I'm just exhausted?

The possible cataplexy would be things like the story of the first time my husband kissed me. I wasn't expecting it and was so thrilled a wave of tingling rushed through me from head to to and all I could manage was to make a little meep sound. At first he thought he'd misread the queues and I didn't want him to kiss me but we got that sorted out quickly enough once I could move and talk again.

I have memories of laughing with my mom, grandma, and sister, and all of us laughing so hard we were all rolling around on the floor because we couldn't stand... this was normal for us. Since then I seem to have lost my sense of humor. I laugh, haha, but don't stand around getting that... tingly joy hilarity. It also gave me ER worthy asthma attacks, so... self defense I think.

I'm one of those high strung people who jump a mile and drop things/fall down when totally surprised. As kids we used to hide and then scare the bejeezus out of each other and they knew they got me good when I screamed and fell down so I couldn't chase them. Same would happen when they'd put ice down my back. My husband is a prankster but I let him know pretty early on that I was NOT AMUSED by jokes that involved surprising me so he teases me other ways. He was therefore unaware of my tendency to fall... he just remembers my tendency to be pissed off at him for days...

And I'm a klutz in other ways, dropping things, running into things, falling over, falling down the stairs when I'm the only sober person at a party, etc.

 

 

You have cataplexy Xera.

Sk8aplexy will relate to your experience of your first kiss with your (now) husband...it happens to him.

The kids did indeed "get you good" when they startled you.

 

I also relate to Sk8aplexy's story of being more comfortable at home and, therefore, more cataplexy occurs at home. We let our guard down at home because we are usually with people who understand and know how to help.

It's not unusual to not want to put yourself at risk and keeping a really tight rein on your emotions is one way of doing it. I have thoughts that this may not be a healthy way to deal with it...kind of like stuffing down anger and ending up with other health issues. We are not robots and shouldn't have to live without emotion.

There's a balance in there somewhere.

 

I just wanted to update here... I told the sleep doctor in Cleveland the same things, plus one more private detail regarding the only consistent time I lose the ability to stand up  :blush:  and he was quite convinced it's not cataplexy.  ::sigh::  I am so confused. 



#11 Ferret

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Posted 10 February 2015 - 02:41 PM

I kinda think that it's not you that is confused Xera. It sounds like it's your Doctor who is lacking experience.

 

It would be a fun thing to ask a sleep Doctor how many times they've actually even seen cataplexy LIVE.  If they've only ever just read about it or seen videos of specific cases then they are no more knowledgeable than you.

In a perfect world, cataplexy would be diagnosed by a Doctor who actually has it. He/she would then know that it doesn't occur with the same severity or emotional trigger every time...there are degrees of severity with it lasting under a minute to an extended variety caused by med withdrawals or extended stress or an accumulated sleep debt.



#12 Hank

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Posted 10 February 2015 - 05:00 PM

Well said Ferret. For me, cataplexy changes like the weather. We all know what rain is, but it happens in so many ways: sun showers, light misty rain, down pours, hurricanes....

If we are describing a light rain to someone who only thinks hurricane, then we will never get our point across.

The basic to C is that it is muscle weakness following emotion.

I get the waves of tingles from music - and sometimes it precedes a knee buckle. It's one of the reasons I don't go to church much anymore. I just had a wave of tingles last evening when I looked at my son from the kitchen- it was so strong it actually hurt.

Until I finally had the C diagnosis, the tingles made no sense - especially to doctors.

#13 purpley

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Posted 10 February 2015 - 06:54 PM

It's not so simple.  Yes, the tingles might be cataplexy.  But episodes of weakness with NO emotional trigger are the problem here.  Either there's an emotional trigger which you just haven't identified yet (like music for Hank) or the episodes aren't connected to emotions, in which case the tingles might be an aura, like people get just before they have seizures or migraines.  Seizures and atypical migraines are really hard diagnoses to catch.  You posted what your sleep doc wrote in another thread and he included narcolepsy as a possible diagnosis, so he wasn't being a jerk.  He just said that some of your symptoms are atypical so it isn't clear yet, and that's a good thing -- you want to have doctors that are curious and don't jump to a diagnosis too quickly.  Treatments for migraines and seizures are a heck of a lot different than treatments for N.

 

If you're going to get to the bottom of it, a diary that includes hours of sleep, what you eat and drink, and a log of every episode will probably be the most helpful thing you can do.  If including food is too much work, just do sleep and episodes.  Jot it down on the notepad function in your phone or use an app.



#14 Ferret

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Posted 10 February 2015 - 11:11 PM

I'm confused...to whom are your comments directed Purpley?

Cataplexy can be a hard puzzle to unravel especially with unmedicated EDS in an officially undiagnosed case of N with C.  I've tried on other threads to explain the difference but I'll try again.

I believe that there are two separate issues going on at the same time. The extreme lack of refreshing sleep makes my body feel exhausted...like I've run a marathon without training...I'm wobbly, feel shaky, am uncoordinated, kind of nauseous, have trouble focusing my eyes and my head feels like cotton wool.

I go to sit quietly in the garden with a cup of coffee but as I am walking there, a car backfires in the street next to my house...my knees give out, the cup has already hit the ground and is shattered and then I'm on the ground.

You can experience both episodes in the space of 20 minutes or less but only the second one is cataplexy.

If your EDS is better controlled with either meds or sleep hygiene or naps, then the episode of cataplexy may just be a dropped coffee cup and a slight dipping of the knees...but there is still no doubt that it's cataplexy.

I guess what I'm saying is that taking care of the exhaustion of poor sleep goes a long way to helping the severity of cataplexy. You've still got it but it makes it easier to deal with and, surprisingly, easier to pinpoint as a result.



#15 psychonauticat

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Posted 11 February 2015 - 01:20 PM

This thread has been very informative, thanks everyone.

 

I have a question for those who experience cataplexy but also blunt their emotions, is it something conscious you're doing to try and control the cataplexy or is it just natural for you? I'm also autistic and emotional blunting is something that has been a part of my existence forever. I can mimic a neurotypical after many years of practice but not genuinely experience what I'm feeling and it does not set off any cataplexy. That doesn't mean I'm completely without emotion though, just that strangers I find it very hard to connect to enough to affect me. This was actually a lot of help when I still worked as a hairstylist. I'm more relaxed and let my guard down around friends and family which is when my episodes happen most often. Music is a huge trigger for me as well, its interesting to see that mentioned. After a really stressful day my favorite band with headphones on is enough to make me go limp, I make sure I'm already laying down before listening though to relax. My cats (and other cute animals) also set me off terribly because I can't blunt how much I love my pets. Maybe there's some irony there in it being called cataplexy.



#16 Hank

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Posted 11 February 2015 - 04:07 PM

I wouldn't say I blunt my emotions, but I guess that is an apt description.

Before dx, I was just embarrassed of what happened when I laughed, was startled, surprised, excited. Without realizing it, I became guarded and hyper vigilant. It was hard for me to relax because I was always anticipating what would happen next.

Unfortunately, I was successful with this approach. It allowed me to function and avoid judgement, but it was also becoming exhausting. It was hard to ever just feel at ease.

Now that I have a dx, I have radically overhauled my life. It became unsustainable. I now laugh freely- except while driving- and I am not embarrassed to drop. In fact, I have a running challenge with my children to make me drop. I enjoy having a good belly laugh now, which I didn't let myself experience for some time.

I am discerning about where I go. I don't go to church much because, as I said above, certain songs will make me buckle. And certain people will have the same effect. I don't like to deal with others' reactions/ judgements- and unfortunately church happens to have its share of judgy people. And I don't like offering explanations to people I don't know well.

I do well when I have a social buffer. When my children were younger, I could always just go tend to them without drawing attention to why I was walking away from a situation. Now that they're older, I don't do that anymore.

I take my dog with me when I go into town- he is a great social buffer. I can always divert my attention to him without it seeming unnatural to others.

I am not a big fan of big public places alone- especially events- or cities. I have to be mindful that I have the potential to be paralyzed for 2 minutes. I don't want to deal with well intentioned 911 callers, or the "drunk in public" accusations I have had. So a social buffer and good judgment seem to be working well.

#17 purpley

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Posted 11 February 2015 - 07:05 PM

I'm confused...to whom are your comments directed Purpley?

 

Oops, sorry -- they were directed at Xera.  (You mean you couldn't read my mind?)  You and Hank definitely have cataplexy, but Xera's symptoms might not be, even though they're very, very similar.  The one atypical issue with Xera is the fact that she has episodes of weakness that are preceded by tingling but seem to have no emotional trigger.  These could be atypical migraines, or even seizures -- it's basically impossible to know from the description alone.  There's even something called "reflex epilepsy" in which people have seizures provoked by lights, sounds, or even (yes) emotions, thoughts, or mental activity, like performing calculations.

 

Our brains and bodies are pretty amazing things.  Would be nice if the manual that came with them was a little better, though...



#18 Xera

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Posted 11 February 2015 - 10:28 PM

Thanks, Purply, everyone. Tried going last two days with only one 15 minute nap each day. Trying to consolidate my sleep. But am instead wrecked, ringing ears, wobbling, and not asleep an hour past OK to sleep bedtime. Took your advice and logged my meds and meals today. I have been keeping the sleep log too as per the sleep docs request. Tomorrow I will try to get a snapshot of how the symptoms are fading in and out. It is so hard when part of the problem is losing time and being stupid though. It's a good idea. The kind of troubleshooting data I would want. Thank you. I should also try to figure out if my falls coincide with common cataplexy triggers. Will print this out and try to journal what's going on when I fall or stumble around.

Hope this is coherent. Don't usually post tired. Relying heavily on my phone to autocorrect and predict the next words.

#19 crumples

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Posted 12 February 2015 - 01:37 PM

I now laugh freely- except while driving- and I am not embarrassed to drop. In fact, I have a running challenge with my children to make me drop. I enjoy having a good belly laugh now, which I didn't let myself experience for some time.

 

Same here. Previously, I would only let myself have a good laugh when I was sitting down or alone (I never really knew why though, as I didn't know I had cataplexy, but I suppose we just develop these habits over time based on what we know). I tell my friends that I'm the true tester of what's funny and not. If you can make me fall down, then you're funny.



#20 Meghan

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Posted 12 February 2015 - 02:16 PM

"If you can make me fall down, then you're funny."

This. This is so right. My niece likes too see how long it will take to have me on the floor. When she came home for Christmas, it took her less than two hours! That is a record! Lol!





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