Cataplexy
Before I begin I have a real story that actually happened at the Narcolepsy Network conference in October of 2003. These conferences are so much fun, you can relax and be yourself and not worry about having cataplexy because you know it's normal around here! This is taken from a Narcolepsy List post and is published with Author and Subject's permission. PWN means Person With Narcolepsy so PWON is Person With Out Narcolepsy and C means Cataplexy.
Subject: [N] -- "Dropping In On Joyce" -- the real story
OK here is the story that some of you have been waiting for (some of you already
know the story as Jean told this to us during lunch on Sat) -- it is
long so make yourself comfortable.
It all begins Friday afternoon -- Jean T and I were taking the train from North
Springs to Art Center (the closest stop to the hotel) and the directions that
Jean's son gave us is based on that. Only, we got off on the next stop and had
to pull a u-turn which made us get off on the other side of the train depot (a
fact that we did not think about till later). We proceeded to follow the
directions that were given us -- so our trip to the hotel was longer than
necessary and my blind-cataleptic friend had a tough time pulling her suitcase
up that very long hill to the hotel!!! Both of us barely made it!!!
But there is one thing that I have found that when a PWN/C is tired, it does not
matter if she has all her meds up-to-date -- she can have C-attacks more easily
than normal! Jean had told me before that she had not had many C attacks during
this past year. With Jean, funny jokes or situations will
make her have a c-attack -- as Emo described it so nicely earlier -- her head
hangs down, arms go limp, and if you do not grab her arm and guide her
to a chair she will eventually go down --- keep that in mind as this story
continues.
We got to the hotel by 5:30 (our plan was to arrive by 3:30) -- Jean tried to
take a nap but only had about a 30-minute snooze before the Friday Nite
Ice Breaker. She did good during the ice breaker -- but Oleta asked us to come
to her room later that nite (she needed some help and had asked about
4-5 PWN) -- so Jean and I are walking off the elevator on floor 12 and began to
look for her room -- I guess I was telling Jean something that made her laugh
and before you know it she had a C attack!!! I tried to yell for help which made
me laugh to think what we both must look like to PWON and add the fact that she
is 80% blind and kept asking me who is that and where are we etc!!
Luckily, Oleta's room was opened and she heard us -- she asked Harold (he is on
the board of Nar Net and Cowboy Don's roommate) to help. We got into the room
only after Jean went in and out of C about 3 times! Now, Harold gets C also --
only he has a better control on it but not by the time that Jean is in her third
attack! -- they both ended up on Oleta's bed! -- with all of us laughing which
makes for more C attacks. Luckily, Oleta, Roseanne, and myself do not have any c-attacks
that night.
Anyway, for the next 3 hours we helped Oleta and ordered pizza -- that is when
Cowboy Don comes in and we get to meet him for the first time! What a charming
and funny man he is! Before you know it Jean and Harold are having C all over
the place and Don is also doing his C dance -- I swear they were each trying to
make the other go into C!!
I decided to leave and go back to my room -- I asked Jean if she would be OK and
Don assured me that they would get her home safely! I just laughed and knew
trouble was ahead -- but what could I do -- they are all adults! Right?
I am back in my room, dressed in my PJ's, watching TV -- when all of a sudden I
heard the door key being used and Jean's laugher -- I waited a few
and she did not appear. I got out of bed and the door was opened slightly and I
saw a man with a cowboy hat had fallen into my room!! I then could
hear Jean and Harold whispering and laughing. I opened the door wider to see
Cowboy Don slowly getting up and holding on too Jean's open pocketbook - I saw a
part of Jean as she is leading on the door jam about to slip on down -- just
then Don falls at my feet again spilling the contents of Jean's purse -- which
made the now recovered Jean to go into C again! I then noticed that Harold was
behind them and he was getting into a complete
stand-up position. I am laughing at all of this which in turn makes them start
to tell me what had gone on previously which makes each of them in turn go into
C.
I quickly bent over to pick up Jean's stuff (which made my nightdress show poor
Don all that God had given me - since he was slowly getting up from
his last attack he got an eye full!) -- I guess that gave him yet another attack
and down he went! (Hey -- who said that I don't "have it any
longer"?). Anyway, this made Jean go into C again and poor Harold trying
his best to get Jean into the room. I grab her stuff and went into the room to
put them on the table. When I get back to the door -- all I see is a cowboy boot
holding the door open a few inches! I open the door to see 3 cataleptics in
various stages of C. Too funny. Harold is on one knee attempting to hold Jean
up, while she is slumped over as Don is slowly standing up missing one boot. He
is trying to explain why the boot ended up in the door, that he did not know
where I went and needed to keep the door ajar! Just then Jean comes to and tells
me that Don lost it after viewing me!! What a scene!! [I hope that I am
explaining this in such a way that you all can see the humor and the situation
that we were in!] I then said I hope no one looks out their door for they will
assume that you are all drunk!
They each are talking at the same time -- trying to tell me the difficulty they
had in getting here.
We all lost it then! (yea, like we have not already) I did my best not to show
them that I was laughing. I had to think of something that will get these 3
clowns in shape. I started to have thoughts that we will never get out of this
cycle of joking, laughing, and recovering from C attacks - so I yelled at them
in a very motherly fashion. I said something like: "This is not funny any
more! I am not dressed for this!! I want Jean to get in here!
STOP THIS NOW !!! "
Well, Jean straighten up and looked at the boys and said: "Can you believe
her telling us what to do??" Which makes all of them start to laugh and I
had to do my best to sound mad so they would sober up -- kind of.
Eventually, Jean got inside and the two escorts went on their way.
The next day during lunch Jean told the rest of the story. For some reason when
I heard the complete story it just tickled me so much that tears were
coming down my face and I had to get up and leave the table! So, here is the
missing part of the above story............ told you it was long!
Jean decides to go back to our room but she could not go 2 feet without having a
C attack -- usually caused by something Don, Harold, or Oleta was
saying or some funny come-back that Jean herself was saying! Bear in mind that
she decided to go back only seconds after I left. So, Harold and Don
being the gentlemen that they are offered to help the little lady get home.
First, they finally got to the elevators -- since Don also gets C from heights
-- the glass elevator is out of the question -- and as luck would have it --
that is the elevator that appears. They decided to wait for the next one. So,
they pushed the UP button again. And the glass elevator opens again!!!
This gets Don and then Jean into a C attack -- each helping the other as the
attack goes on. There is laughing and C and silence for many minutes till
finally they had no choice but get in the glass elevator. Once in the elevator
the C-attacks continued. Remember, Jean can not see very well and does not know
the buttons etc and relies on the boys to make sure that she gets off on floor
17. She is also digging into her purse for her room key (the one that is like a
credit card).
The boys tells her that this is her floor and since she has finally calmed down
she assures them that she can make it to her room. Our room was 1700 --
the first door on the right, right off the elevators. So, off she goes. key in
hand, over to the door while she hears the elevator leave. She is trying to put
the key into the slot and is getting nowhere. She tries it every which way. It
is not working? She knocks on the door -- softly calling my name and wondering
why I don't come to the door. She can not believe that I am sleeping already --
but then she thinks "OH NO! she takes Xyrem -- I will never get inside
tonight!!!" Just then she hears the elevator stop, then she hears Harold
and Cowboy Don's voices! She turns and they both say to her:
"We sent you off on the wrong floor! This is 15 (our floor) not 17! Sorry
about that!"
This gets all of them laughing and C'ing again. And then one of them looks at
the key that is in Jean's hand and noticed that it was not a hotel key but a
medical card! They are really doing a bang up job! Plus, Jean tells them how she
tried to get into the room and luckily no one was in that room -- or if
they were they were afraid to open the door.
So, they proceeded to make it to the elevators once again trying to avoid the
dang glass one and up onto floor 17 going into C at every opportunity!!!
It took them about 1 hour to leave Oleta's room on the 12th to ours on the
17th!!!
- -- now you know the rest of the story!
+-- Message author: "Joyce A. Scannell"
This page is taken strictly from Brian's web site. I
thought he did an awesome job, I wouldn't change a thing. My triggers are
extreme joy (like when I'm proud of my kids or my country, Church worship is a
big issue for me I usually don't go because of all the gawking when I have bad
Cataplexy). I have a lot of problems with fluorescent lighting. They flicker,
and your brain patterns flickering, and then I can't deal with it. Physical
activity is another one for me. No matter how much I try to bring up my physical
endurance I've been able to do less and less every year. When I do do something
it doesn't take much and then I need to rest, when I rest my relief puts me in a
bad Cataplexy attack. I also have problems with having continual Cataplexy until
my body recovers (like a nap) but often find myself drifting between Cataplexy,
Hypogogic Hallucinations, and Sleep Paralysis until my body finally gives up
fighting and I sleep a good deep sleep for an hour. Unfortunately it takes 2-3
hours to get to where my body stops fighting. I can get up if there is an
emergency but it just prolongs the attack. I also have learned, thanks to Brian
who helped educate me, that if I feel an attack coming on, I need to go with the
flow and let it pass. The more I fight it, the worse and longer it will be. To
understand our symptoms is easy if you look at it like this....
Our brain's don't know if we are asleep or not. They have to make decisions based on other information. EVERYONE has Cataplexy, they're just asleep when it happens. When our brains go into REM sleep it shuts off voluntary muscle tone so we don't act out our dreams. If it sees an emotion as the entrance to a dream it triggers the counter chemical to halt muscle tone. The stronger the emotion or trigger the more chemical released and the less voluntary muscle tone we have.
Brian's description of What cataplexy feels like:
I'm going to attempt to describe what cataplexy feels like, to me. Many people
experience this event, attack, whatever you want to call it, differently, so
I'll post mine and maybe someone else will post their version.
I've become used to rating my cataplexy for my sleep logs that I keep for the GHB study. A C-1 is the most minor, to me that means it only affects a small portion of my body, a single muscle or muscle group, the strongest is a C-10, meaning full body, involving every muscle or muscle group. I'll use these ratings in this description.
A C-1 to me usually involves a muscle group or just one part of my body. It seems like it usually starts from the head and works it's way through the body but I have had times when just a hand or an arm was affected. Cataplexy rates as one of the strangest things I have ever felt, right up there with sticking your finger in a light socket, except at the opposite end of the scale. The closest I've ever come to it was when I was given a nerve block in my foot once.
With the small ones I don't usually get a warning, it will affect the target area, making it weak. One example is, if I'm holding something and have cataplexy, that hand starts to lose it's grip, no matter how hard I try I can't tighten up on what I'm holding. That's a C-1, it can last a second or many minutes, it really varies.
Quite often the only parts affected are my speech centers or my neck muscles, my head will drop to my chest or it will just be hard to hold it up, my speech will be slurred, garbled or words just won't come out right, a word like dog will come out as bog or bod, etc.
With a C-5 that would affect my arm/hand, I wouldn't be able to hold on to the object, it would drop to the floor or table and any attempts to pick it up would be futile, with an attack of this intensity I would also lose a bit of sensation. My hand wouldn't be numb but I couldn't feel things as well as normal, the muscles would be slow to respond and wouldn't quite do what I want.
A C-10 will give me total lack of use of the muscles involved, if it were my arm, it would drop, I could not move it nor feel it unless I used the other arm. With an attack of this intensity I know I'd better sit down because it often will spread to other parts of my body. The strangest thing is, that it doesn't feel numb, it doesn't tingle once it's fully involved, there is just a total lack of sensation from the involved area. An attack of this intensity will often give me a warning, a tingling in my fingers, a numbness in my nose, a swimming sensation in my head. When I get these signals I now know I'd better sit down fast because I don't know if it will affect one area or my whole body. I've ended up wounded too many times because I miss-judged what was about to happen. Thinking it would just be my arms and neck for a few seconds I've often found myself in a crumpled heap on the floor.
Full body attacks. (aka, Fall to the Floor cataplexy.)
A full body attack can be one of the most awful, most frightening sensations ever. Now that I know what they are, they aren't so bad, but before I knew, they were very frightening. I've had many kinds of warning signals, those described above, also a sudden loss of sensation through my body, a sudden increase in hearing ability (everything gets loud), an increase in the ringing in my ears, swimming colored spots in my vision, nausea, dizziness, I can go on and on. When one of these warning signals hits, I may have a few seconds to decide what to do, or it may happen all at once. When the attack sweeps over me, it's like someone pulled my plug, sensations leave me, my vision grows dim at an alarming rate, I can feel my muscles weaken and give out, if it takes a few seconds I may feel myself crumple on my way to the floor, if the attack happens in a split second, I may go from standing to suddenly knowing I've collapsed.
While still involved in the attack, I can still hear, if my eyelids stayed open at all I may be able to see a little but not focus and not move my eyes in any particular direction. My hearing sensitivity seems to increase but this may just be my perception because all my other senses are shorted out. I can usually hear myself breath and when these first started happening I thought my breathing would stop. Now I know it only slows down greatly and depending on my body position, it may be difficult. Usually it becomes a little more difficult to think clearly, I find myself repeating thoughts in my head, most often I just wonder how long it will last and if I'm going to hurt when it's over.
As I come out of it, I will begin to regain sensation and control over my muscles, in that order. It seems pretty random as to which part of me will work first but it quite often starts at the top, sometimes I'll be able to mumble first, controlling my breathing I can "croak" out some words, other times it will be my eyes, first opening but still blurry, then the ability to move them, then focus them comes in. The longer the attack has been seems to determine how long it will take to come out of it. If I've hurt anything or if a limb is twisted under me, I'll often feel the pain before I can move that body part. The pain will often put me back into a full attack and I have to start all over. Sometimes I will be able to move fingers or toes before anything else. It seems odd that the outermost portions of my body would be the first I would have control over, but then, the whole experience is odd. I've even had whole body collapses where some part of me wasn't involved. I've been able to speak and move my eyes but not move any other part of my body. I do get tingling sometimes as things start to work again, this seems to be an indicator both ways for me, when things are about to stop working I tingle and when they are returning, I tingle. This is not always the case though, I have had attacks, full body or otherwise that hit fully without warning and I have had spontaneous recoveries. It does seem consistent though that the longer the attack lasts, the longer it takes to recover, no matter how much of the body it involves.
One of the symptoms that most of us have experienced at one time or another is (SP) Sleep Paralysis. It's that time when we are either about to wake up or trying to fall asleep, you can think but you can not move, sometimes you can feel your body, sometimes not. The key is, that when you think, I'll move my legs, you can't, you just lay there. It's easily understandable that this can lead panic to attacks. If it's ever happened to you for a prolonged period of time you know how miserable you can feel when you're trapped in your non-responding body.
Cataplexy is a form of SP, the difference being that it doesn't have to involve your whole body, it can affect any group of muscles or even just one muscle. Sometimes you may still have feeling in that part of the body but the thing that makes it cataplexy is that it does not respond to voluntary commands. So, you laugh real hard and your head droops or your face goes slack and when you try to correct the problem it doesn't respond. As I said, it doesn't have to start at the top of your body, each of us experiences it differently, personally, I experience it differently for different incidences. A laugh can make my legs weak (note that I say weak, not total loss of use), a loud noise will most often make my upper body go weak, if it lasts more than a few seconds it can progress to the point where I slump over in my chair, or against a wall if I'm standing.
What my cataplexy triggers are:
This is an attempt to explain my cataplexy triggers. I say my cataplexy triggers
because just as we are individuals, we all have different things that will
trigger an attack of cataplexy. This may not be totally technically correct,
anyone who knows better, please e-mail me and I will adjust what has been
posted.
Just as we all experience the symptoms of narcolepsy differently, those of us who have cataplexy as part of our symptoms have different things that trigger the cataplexy attacks. It is said that emotions are what causes a cataplexy attack to be triggered, this is true but I have found that many times an emotion is triggered by some event that in turn then triggers the cataplexy. We, as persons with narcolepsy/cataplexy often have learned to mask our emotions so that they do not interfere with our daily lives. From the perspective of another person this can sometimes appear as if we are cold or hard - unfeeling people, this is not true, we simply have learned to experience our emotions in ways and at times when it is safest for us and those around us.
I have found my cataplexy triggers to be the following:
Pain
Sudden loud noises
Sudden change in visual perspective (such as moving my head too fast)
Trying to do 3 or more things at once when I'm sleepy or tired.
Emotions, a few examples:
Sorrow, surprise, strong love, laughter, joy, anxiety, anger, upset, success,
fear, relief. There has got to be a million variations and combinations of these
emotions.
Each situation will determine the strength of the cataplexy attack and my condition at the time will be part of this and the determining factors in the duration of the attack.
The first few things that I listed are not emotions, so I was quite surprised when I was first told that emotions are the only things that trigger a cataplexy attack. I thought, if this is so then I have something seriously wrong with me that I'm going to have to seek further medical help for. Then through much research, reading what others on the AOL narcolepsy boards and the Narcolepsy InterNetwork mailing list had to say on the subject and doing some self testing on my own, I have learned that those things are linked to emotions and therefore are cataplexy triggers.
I have also learned that we may feel quite a number of emotions in the course of the day without always realizing it. We are creatures filled with emotional mechanisms, just turning your head can bring something into view that evokes a memory which brings up an emotion which in turn triggers a cataplexy attack.
It has been said that Cataplexy is triggered only by positive emotional response. If someone knows who it was that said that and if it's posted somewhere on the internet, please contact me with the info. I was puzzled by this because I thought that it didn't fit me because I have Cataplexy attacks brought on by anger and other negative response emotions, I later realized that it was true and that the cataplexy never happened during the period of anger, but only when the anger has subsided and replaced by some positive emotion like relief or the emotion brought on by success.
The mechanism of negative emotional response: Adrenalin rushes through the body, blood pressure climbs, pulse rate climbs, muscles tense and nervous responses are at peak function (or, as peak as they can get in a PWN).
The mechanism of positive emotional response: The body relaxes, blood pressure lowers, pulse rate lowers muscles relax and nervous responses are at a leisurely rate.
What I have learned to do about it:
I have learned how to fall, I used to fall like a tree, rigid and straight
over, usually smashing my face or the back of my head into the floor, or the
dirt. Now I fall by buckling my knees, keeping my hands close to my side if I
can and "crumpling" my body up so that I fall in a heap instead of
straight down. I agree that this can often hurt more, because of the bent limbs
but I have too many scars on my face where my glasses gouged a groove into my
cheeks
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