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Cataplexy Diagnosis Question


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#1 Mmartens3

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Posted 16 April 2013 - 10:23 AM

I recently saw a sleep specialist as I was concerned I had sleep apnea. But during the assesment it became apparent that the line of questioning was leading towards a dignosis of N rather than OSA. When he asked about cataplexy, I mentioned only one instance in my life that I could remember and then other instances that might be but I think it is a stretch. But he basically pre diagnosed me with N with cataplexy and sent me for a blood test. But I think it will come back negative as I don't think I really have cataplexy and I read that the gene test only comes up positive when there is cataplexy. I do have EDS, SP, and HH. I will be going in for a sleep study in a couple of weeks. My question is this: 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? And can cataplexy occur without a sleep attack following it? My less subltle episode was when my husband proposed to me. I had been sitting so I stood up to give him a hug. I felt a rush of emotion, my body felt limp, and my legs felt like jello and my knees buckled. He had to catch me. It only lasted a couple of seconds. I did not go to sleep. I often feel a wave of muscle weekness when I experience anxiety, nervousness, or excitement but I don't fall over or go to sleep. I often sit down though. I do not have any reactions to laughter but I often find myself slurring my words or not being able to even finish a punch line when telling a joke. I always attributed all of these symptoms to nerves. Isn't it normal to experience a wave of what feels like weekness all over when experiencing strong emotions? Well these are the experiences I shared with the sleep doctor. I am thinking he just wanted to get the blood test done so he was grasping at straws. Anyway, I do not have the obvious falling over kind of sleep attacks. I just get so tired during the day that I feel like I cannot make it without a nap. And if I am in a meeting, class or church service I will doze off. I do get SP and HH together upon going to sleep and upon awakening but not every night. I am anxious to get a dx as I have been struggling with fatigue/EDS and SP and HH since I was a teenager.

#2 exanimo

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Posted 16 April 2013 - 11:09 AM

Sounds like cataplexy to me.

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:
http://www.advocateh...ypeIDURL=APT_10

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

#3 sk8aplexy

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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. 



#4 Mmartens3

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Posted 16 April 2013 - 12:11 PM

Thank you both examine and sk8aplexy for your responses and resources. Ok so I may have cataplexy. At this point my husband is very skeptical of an N diagnosis for me. I have gone to drs so much and have gotten so many different tests so he sees me as a hypochondriac and thinks I just make too much stress for myself. I cannot talk to him or other family members/ friends about this right now. I have to lay low about this until I get an official dx. I am glad to have this forum to vent.

#5 exanimo

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Posted 16 April 2013 - 04:29 PM

I am very sorry to hear that your support system isn't willing to hear about this right now! But unfortunately, as you will see, that is a common occurrence for us PWNs. Narcolepsy is a hard disorder to understand, for a number of reasons. Th hardest thing I've had to fight against is the misconceptions of what it is. The media has very rarely portrayed narcolepsy correctly and it is very hard to convince people that what they think they know is not accurate. But with time and patience some people come around better than others and eventually you will find people who understand the limitations you face.

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! :)

#6 Mmartens3

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Posted 16 April 2013 - 06:42 PM

Examino, thanks for the encouragement. I think with a conclusive diagnosis and a little bit of education on this disorder, my family and friends will be supportive.

#7 munky

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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.



#8 h.wynn

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Posted 18 April 2013 - 12:35 PM

I had the same thing with mt family. I have spent so many years trying to find out what was wrong. I beleved the docotrs when they gave me a diagnosis. So when I was diagnosed with n they all said whatever she is a hypochondriac. It has taken years for them to come around and see that it has always been N the other doctors wrer wrong.

#9 h.wynn

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Posted 18 April 2013 - 12:40 PM

I forgot to tell you. You have cataplexy.



#10 Mmartens3

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Posted 18 April 2013 - 02:17 PM

H.whyn, yeah,I don't know if they would even believe a drs diagnosis. Not right away anyway.

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.

#11 h.wynn

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Posted 19 April 2013 - 09:40 AM

You have been watching to much TV. I never fall asleep after a cataplexy attack. I rarley fall to the ground. Most of the time its just some weekness in my knees and the musels in my face go limp. Where I think you ars having them is the jokes. I cant tell a good joke. I am funny, I have a grate sence of humor. I cant even burn someone cuz I cant get the words out. Its not nervs its cataplexy.

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?

NO ONE!!!!

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.

#12 Mmartens3

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Posted 19 April 2013 - 10:12 AM

My husband says that I just don't know how to tell a joke. He says that most of the joke is in the delivery and I just can't deliver! Is it cataplexy? Maybe. I don't know. We will see as time goes on if it happens more often. I am pretty sure that I have N though. And I think I have had it for a long time.

#13 Mmartens3

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Posted 25 April 2013 - 05:00 PM

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!

#14 h.wynn

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Posted 25 April 2013 - 08:48 PM

No naps that day go tired.

#15 Hank

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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.



#16 Starbuck

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Posted 26 April 2013 - 09:00 PM

Yeah, I think if I had to to PSG/MSLT over again, I would have taken my allergy medicine no matter what they say because having that stupid thing up my nose when it was running like a faucet made it much more difficult to relax and fall asleep.

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.