Cataplexy Diagnosis Question
Posted 16 April 2013 - 10:23 AM
Posted 16 April 2013 - 11:09 AM
I have mild cataplexy - it is infrequent and I have only had a full body collapse once. When experiencing C, I find it difficult to keep my head up, hold up my arms or even stand without support - I might reach for a nearby surface or sit down if possible. I also want to point out that a blood test is not the best indicator of N w/ C but especially for N w/o C. The Psg and Mslt are the two main diagnostic tests and thy can be combined with a blood test or spinal tap to come to a diagnosis. I think that the blood test is the least accurate of all - since there are many people with N that don't have the common gene. That doesn't mean the test isn't useful, just be aware it is not a common diagnostic test by itself.
People with severe cataplexy do not fall asleep - they appear asleep because they have lost all control over their muscles and despite not being able to move they are completely conscious and can hear and feel their surroundings.
But yes it is very possible to have cataplexy that is mild and only affects the upper body, or perhaps even just facial muscles. I'm going to give you a link to a site I found that has great and concise definitions of tetrad symptoms of narcolepsy.
Here is the link:
Good luck! I hope you find this sit helpful as well as the NN! I know how hard it is to get a diagnosis, and the relief of it as we'll. this is a great place to share your thoughts and to ask questions. some of us are tired and might only skim posts, but we are here nonetheless! <3
Posted 16 April 2013 - 11:19 AM
I agree with exanimo, it does sound like Cataplexy.
Feel free to look through videos I've posted on this blahg: http://narcoplexic.com/Narcolepsy.html
"Can cataplexy be so subtle and infrequent that it is not really noticeable unless you really think about it and come to the conclusion that the certain responses may be cataplexy?"
Hmm, not so much necessarily a matter of thinking about it but rather perhaps (at times) a matter of noting/recognizing it. It can be very broad in the different variations alone, within how persons can be effected, not to mention the multitude of different variations of how it is triggered, for each one of us who experience it. Over the years as it progressed, I developed a tendency to look down as finishing any joke or pleasurable comment because for myself, it (very often) can be a slight bobbing of the head with perhaps a sort of facial spasm (quick paralysis causing my facial expression to go odd), a pause or freeze up of my body (which can either lead into collapse or return of the muscles) or just of my speech (slurring/mumbling what I'm saying), I'm not totally sure but I believe it can also effect my thinking or ability to think sort of making it like the muscles flicker (this is in social groups or one on one with some who makes me nervous - for instance, around ladies that I like who I want to joke or converse with -is harsh-). For years I'd lean against a wall or whatever I could find nearby, as weakness or what is when it is more intense, muscle flickering.
"And can cataplexy occur without a sleep attack following it?"
Yes. Each person with it, experiences different variations of how it effects them. I've never had a sleep attack result during or from Cataplexy. For me, as I said above it can be minimal, but it can also be practically instant/immediate collapse to an awkward position on the ground; throughout this, I am fully thinking/conscious, able to hear and usually also see just fine. The muscles return in just a few seconds to sometimes perhaps 20 seconds.
-Things which help me to deal with it:
Avoiding, limiting, lessening stress and anxiety. Also not overwhelming, over exhausting, or overreacting can lessen the likelihood of Cataplexy occurring.
Resisting it, does not help, at all and in fact can worsen it, prolonging it.
To lie down however possible as quickly as possible to let it dissipate can save drama; that is, if it feels (the flickering) like it may be worsening or you may be about to collapse (this for me, may be after I've froze in reaction to whatever triggering).
Having understanding and recognition of the condition, always paying close attention, has helped me to cope as well as live with, it...
The best of luck.
Posted 16 April 2013 - 12:11 PM
Posted 16 April 2013 - 04:29 PM
I encourage you to look around the forum, the site and to check out other resources as well. Good luck and please keep us updated!
Posted 16 April 2013 - 06:42 PM
Posted 17 April 2013 - 05:28 AM
I didn't think I had cataplexy, either. When asked about it, I could only point to two events: the first when I was 10 years old, the next when I was 27. Both times admittedly involved sudden extreme emotional shocks related to my geekiness, and sudden extreme emotional shocks of any kind are very, very rare in my life. I can't, in fact, think of any instances other than those two events. When I first got my diagnosis, it was 'Narcolepsy without significant cataplexy,' and I took that to mean I didn't have cataplexy. At my next appointment, however, I had to get a letter from my doctor to take in to work, and his letter referred to my diagnosis as 'narcolepsy with cataplexy'.
But then, I've always been somewhat ... emotionally detached. I just don't experience sudden strong emotion. Maybe that's what's saved me so far. Anyway, my point is that everyone's experience of cataplexy is different. The triggers are different, the effects are different ... some have more triggers and therefore more attacks, some have fewer; some have stronger effects than others; and, if I understand what I've been reading here, for some people different triggers can actually cause different effects.
I also wasn't having "the obvious falling over kind of sleep attacks." Most of us, in fact, don't, despite what everyone sees in movies and mainstream media. In my case, a supervisor at work would walk past my desk and see me sitting there, my chin on my fist, eyes closed, and apparently asleep. He'd tell me to wake up, I'd insist I was awake, and we'd argue ... until the day one of my co-workers told me that, yes, I had been sleeping. I never even knew it, myself. I didn't feel sleepy; I didn't feel like I was falling asleep; I didn't feel like I was asleep; and I didn't feel like I was waking up! Sure, I was tired, but I've always been tired and I didn't really feel any worse than I always have ... but I was falling asleep without ever knowing it, sometimes for as much as 30 minutes at a time.
The genetic test is not actually definitive. As I understand it, only 90% of people who are diagnosed with narcolepsy with cataplexy get a positive result on the genetic test--and, as you noted, the percentage is significantly lower for people who have narcolepsy without cataplexy. My doctor never even tried it. I'm glad to hear you'll be having a sleep study, since all my reading suggests that's the most reliable diagnostic tool for narcolepsy.
I hope, whatever the diagnosis you end up with, that your family and friends will be supportive. It's helped me more than I can say to have that support system, as well as the folks here. I mean, my family and friends are supportive, but most of them don't really understand ... and the people here do.
Posted 18 April 2013 - 12:35 PM
Posted 18 April 2013 - 02:17 PM
I'm still not convinced that I have cataplexy. I think slurring words may be due to sleep deprivation. I think it is normal to feel a wave of weakness briefly when becoming emotional. And my one experience of jello legs doesn't convince me either. It could happen to anyone. But I will definitely be paying attention to see if it happens again.
Posted 19 April 2013 - 09:40 AM
Befor I found out that I had N. 2 people said to me "Mabie you have narcolepsy." I told them "Thats not it. People with narcolepsy fall over and go to sleep. I dont do that. Im just tired all the time." If I had listend to them and checked it out I could have saved myself 5 years of torcher.
I started seeing a sleep dr cuz I snore. Well, and cuz I was so tired. He started asking me all kinds of weird questions. Like dose your head fall forwaor when you laugh. It had just started happrning about a year befor I saw him. I had been trying to explain it to my boyfriend. Who was some how always looking theother direction when it would happe and never saw it. The Dr. told me that I had N. At the first appointment. He said I would have to do a sleep study to conferm but that was just a formality. I would never beleved him if he dident just know so well what had been happening to me. I mean N for real. Who would beleve that?
If they new what N was they dident beleve it. The one that got me was all the people that confused it with epilepsy. Like thats even close. I had to do lots of recurch on my own. Come to findout I have had N for a very long time. Once I new more I could start to explain it. I found that it helps to bring family to my dr apointments and let him explain. He also could show them my sleep study on the computer and how he new it was N. It could help.
Posted 19 April 2013 - 10:12 AM
Posted 25 April 2013 - 05:00 PM
Posted 26 April 2013 - 08:25 AM
I called the dr today to ask about the HLA test results since I hadn't heard anything. The receptionist found my file and told me the results were negative and she didnt know why the dr hadn't called me. I am assuming he was just going to let me know after the sleep study. Anyway I figured it might be negative since I don't have any obvious cataplexy symptoms. My sleep study is this weekend. I am nervous about it. Any tips you guys have will be helpful!
Relax and be comfortable- more easily said than done. Wear clothing like a loose t-shirt that will allow the techs to wire you up. I brought a book since reading puts me to sleep fast. If any of the stuff you are hooked up to is uncomfortable, let the techs know. For example, on my first PSG, I had a little tube under my nose (to sense air flow) that tickled and disturbed my sleep, but I did not complain. On my second study, the tech snipped it shorted because it can tickle. Aaaah- I dreaded repeating the test because of that little @!#! tube and it was so easily corrected. So, just make sure you are comfortable. Maybe get some exercise early in the day to help you sleep well that night.
Consider singing an easy song in your head or repeating a simple phrase in your head during the MSLT. Clearing my mind helps me fall asleep. I have found that over time I have become a master at keeping myself from falling asleep during the day. I did not want that to work against me during the test, so consider something that will work for you. I hope all goes well and you get the answers you are looking for.
Posted 26 April 2013 - 09:00 PM
Anything you can do to make you more comfortable like bringing your own pillow/stuffed animal, calling a loved one, is so important because I think the likelihood of people having to redo these tests are high.
Also, don't freak out if you don't think you've fallen asleep in the naps. I didn't think I fell asleep in my first nap, but after answering those 3 questions they always ask (1. Did you fall asleep? 2. Did you dream? 3??? -- do they still do this?) the tech told me that I had fallen asleep and that reassured me not to worry about it.
Bring a hat to cover up the glue they put on your scalp (looks like pigeon $&@#) when you leave to go home.
Posted 17 January 2015 - 07:00 PM
I am a retired senior citizen and I first got narcolepsy at age 12 (though not diagnosed at that time), so I have had it for a very long time. Your symptoms do definitely sound like cataplexy. I have heard mild cataplexy referred to as shadow cataplexy. My cataplexy is much milder than yours but I know I have it, although I never bothered to get a cataplexy diagnosis, because my cataplexy is so mild. I would say that my longest cataplexy attack lasted probably less than one second and that is the only one where I actually started to collapse. It happened close to 40 years ago. I was upset with something my roommates dog had done, upset enough that it brought on strong emotion and I stamped my foot in anger, but that strange feeling happened (that happens whenever I have a barely noticeable cataplectic attack). At any rate my leg started to collapse. I only have cataplexy on one side, so I might not have collapsed even if it had lasted a few seconds longer, but in any case it was over so quickly that my leg went back to normal, before it had collapsed more than a few inches. During another of my rare and mild attacks, my jaw dropped in the middle of a word, when I was taking a customer's order as a waitress. The customer didn't appear to even notice and it was over so quickly, that it didn't really interupt whatever I was saying. The strange thing that I don't even remember being particularly emotional when that one happened, but that was the second worst one I have had in my life. The rest of the very few cataplexy attacks that I have had in my life are just that strange feeling during certain types of emotion. They don't even last long enough for any body parts to begin any kind of collapse or anything and yes, they don't appear to have anything to do with sleepiness.
Then there is another type of attack that I have that lasts much longer, which I never thought had anything to do with my slight cataplexy, but from some of the reading and research that I have done I now think that it may be another expression of my cataplexy, although I don't get that weird cataplexy feeling like with strong emotion. When I am really sleepy, but fighting it off for a long time, my left side (the side that I have cataplexy on) goes weak and it often lasts until I am either able to give in and take a nap or I have the opportunity to do something very physically active and stimulating. This was a frequent problem for me when I used to have desk jobs, because I was expected to stay awake of course. Now I am on Modafinil (generic Provigil) and the pill only works well when I have had adequate sleep and there seems to be other factors also, which make the pill not work as well sometimes, but I am not sure exactly what all of those factors are in order to avoid those factors. Usually due to the fact that I have taken my medication I am able to stay awake and conscious, but may still become very sleepy. If I keep fighting it, the same thing happens as when I used to fight sleepiness at work. I have read about shadow cataplexy and even one sided shadow cataplexy, so while rare even that is possible.
Because as narcolepsy goes, mine (and yours, I think) isn't that severe compared to how it is sometimes portrayed, family and friends don't really realized how hard it makes our lives. You hide it, fight it, and do your best and people have no idea how hard it is to keep on keeping on, because you do a good job of faking it, so when you do become obviously sleepy at an inappropriate time, they think it because you are neurotic or a wimp or you just don't get enough sleep.
These days because I am both retired and also taking medications which make my narcolepsy extremely mild, it is pretty easy to live with, but that wasn't always the case. In some ways the problems it caused kind of ruined my life, compared to what it would have been without the narcolepsy, but I always figure that many people have to cope with a lot worse disabilities like being unable to walk or being horrible disfigured or something, so in the scheme of things it wasn't really that bad, but because it is a more or less hidden disabilty, people sometimes do think you are just weak or that you don't try or something and I think that is why your family doesn't understand your problem. I hope that you can educate them. Probably if you could find something written in layman's language to explain the disease to them it might help, but then maybe not.
Well, good luck.