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Is It Cataplexy?


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#1 basil44

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Posted 09 March 2013 - 04:51 PM

when I started having symptoms of N, I also started having these dizzy spells. They're not really dizzy spells but something akin. When it comes on I feel out of sorts, i get electrical pulses from my brain to my eyes and out through my feet along with dizziness. I can't really see when these things happen because the room is spinning and everytime i have any eye movement it comes on strong. When I was going through a time of stress it lasted for weeks. All day. It's very hard to drive and I probably shouldn't do it, but a girl's gotta work.

 

I went to a nuerologist and he did a MRI and everything looked great. I was a little disappointed because I wanted to know what was wrong.

 

This "dizziness" comes on when I am stressed, angry or something shocking has just happend or if I am embarrased. I have talked to three different doctors about this and no one can tell me what the problem is . they kinda just change the subject. I am going to my sleep doc in a couple of weeks, so while I am not going to mention cataplexy, I am going to tell her my symptoms and see what she thinks.



#2 munky

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Posted 09 March 2013 - 08:51 PM

I don't know if it's cataplexy. I have never, to my knowledge, experienced cataplexy--though some folks here have said they think it might be a possibility for me based on some of the experiences I've mentioned. None of what I've read seems to be anything like what you mention, though. Someone with more experience and a better understanding of cataplexy should be along to answer your question soon. In the meantime, what I want to say is: Yes, definitely tell your sleep doc your symptoms.

 

In the meantime, it might help to read this article: http://www.webmd.com...-topic-overview. It explains how we can best explain to our doctors what exactly we're feeling, since people often use "dizziness" to describe two very different things: lightheadedness and vertigo. This article explains what the difference between the two is--though I don't see anything about the "electrical pulses" you mention--and the most likely causes. It might help you better define what you're feeling and make it easier for your and your doctor to figure out what's happening. It wouldn't hurt to print out the article and take it with you to the appointment so you can discuss with your doctor what parts of it apply and what parts don't, what's the same and what's different. Just be careful you don't self-diagnose--don't decide before you talk to your doctor that you know what's wrong, then reject your doctor's opinion or advice.

 

Good luck!



#3 Bobbie

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Posted 10 March 2013 - 04:41 AM

If you were having Cataplexy, your muscles would not allow you to stand up, much less drive.  Your brain thinks you are asleep and dreaming and you have no control over your muscle tone so you would not be able to stand up at all.  And it only lasts for several minutes and it's over.  With the symptoms  you are giving, I don't understand how you could even walk around all day being dizzy.  All day?  Is it constant or  does it come and go?  Sounds like it has more to do with your system of nerve endings or inner ear.  There is so much going on these days that doctors aren't trained to evaluate.  I am referring to human reactions to chemicals and more & more food additives that make their products have longer shelf lives.  What we eat these days is slowly killing us and so few are recognizing what is happening.  I've had severe Cataplexy most of my 70 years so I am certain you don't have it.  If I were you, I would seriously evaluate what I am eating, drinking, smelling, touching, shampoos, soaps, and just about everything else you come in contact with at home or work.  Read the label on everything you put in your mouth.  If the Ingredient list is so long that it would take a long time to read then that is a sure sign it has more additives than is healthy so avoid it just for that one reason.  Avoid anything with soybeans (of any form).  Avoid anything with high fructose corn syrup, msg, artificial sweeteners or sugar free products of any kind.  Also avoid anything with aluminum sulfate (or aluminum in any form).  Also be aware that your skin absorbs everything you expose it to.....and there is even a possibility that you could be having a reaction to a new perfume or room deodorant  spray.  Sometimes, figuring out what the culprit is that is causing your problem could take a while so be thorough and check out EVERYTHING!  I doubt that a doctor would suggest any of this but then since you have already seen 3 of them with no results, it's time you started your own investigation.  It is a real rat race these days and it is going to get much worse.  The sooner you educate yourself and get very SAVY.....the better off you'll be.  Much luck to you, my dear.  I hope you recover soon.



#4 dormir

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Posted 10 March 2013 - 07:56 AM

Doesn't severity of cataplexy differ from patient to patient, though?  

 

It seems like there is a range of symptoms varying from mild to severe.  Isn't it possible to have mild cataplexy, without the text book collapse upon laughing/anger/upset/other strong emotion?



#5 sk8aplexy

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Posted 10 March 2013 - 11:36 AM

Bobbie.  Very Well Said.  I Second, strongly, what you say.

Salts, sugars, flours are not great for us and there are great (for us) alternatives than what is commonly used any longer in near everything, especially that is processed.

Himalayan Salt, Honey and avoiding what you do not cook are just a few measures that one can take, also do avoid GMO and, especially with meat/s, eat local/organic...

 

Here are some links:

http://e360.yale.edu...g_tobacco/2136/

http://www.yaleruddc...Foodtobacco.pdf

http://www.independe...ts-8490815.html

 

 

Please, this is only to inform, it is blatant and obvious, if you are willing to look (having an open mind is very relevant).



#6 MINItron

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Posted 10 March 2013 - 01:42 PM

I totally agree with what others have said about watching what we put in, and on, our bodies. I cook 85-95% of the food I eat, and I have eliminated many of the chemicals in my daily life. I use a locally made hot processed soap with no SLS to wash my hair, body and to shave. I also use an old fashioned tooth powder to brush my teeth. It's amazing how many needless chemicals one can remove from one's life by simply switching to a good old-fashioned bar of soap and tooth powder. My skin, hair and teeth have never been better either.

 

There are varying degrees of cataplexy. I have only mild cataplexy. My knees buckle in response to crowd induced anxiety (very rare and related to now resolved post traumatic stress after an Iraq deployment), and I lose control of my hands when someone throws a ball at me (I can not play sports with balls). My cataplexy in no way affects my ability to drive, or work in a high stress environment. I'm a sailor that fixes airplanes in the Navy. I don't know if it's my personality type or my military training, but in an emergency or an adrenaline filled situation my emotions switch off, and there is no chance of a cataplectic attack. Once an emergency is over I may have a sleep attack to recover though. I lived with this for at least ten years before I was diagnosed, and developed a lot of coping strategies.



#7 sk8aplexy

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Posted 10 March 2013 - 08:17 PM

MINItron, good point and interesting what you say regarding your experiences with Cataplexy.

I feel that, or it seems like in hindsight that, being around certain people who I know well who have very strict attitudes and perspectives, it can seem like such actually decreases my likelyhood of Cataplexy occurring, when with/around them.  Yet, it can, although it seems to occur mostly or more frequently when I'm in a place of comfort and around those who are understanding.

I do collapse on occasions but more often I'll have a facial/neck weakness very briefly, directly in response to some trigger; 'varying degrees' of both cause-triggers and effects-weakness/paralysis.  Very much I've noted odd fluctuations of when/how/what hits or triggers me. Stress/Anxiety/Nervousness of any sort, and especially in any grave amount, dramatically increase the chances of Cataplexy occurring, for me...

Well said, 'emotions switch off.' 

Seemingly, similarly for me, in 'emergency and/or driving' sorts of moments, activities, and/or responsibilities, there thankfully is strength. 

Never have I had an episode while driving, although for years and since Cataplexy became interfering in my career (construction is stressful and on sites, the joking is endless) and also in my interactions with friends as well as random people, I've restricted myself from having any passenger/s (as having another in the vehicle, for me, does create a risk). 

I only drive when it's of actual need, very limited amounts maybe a few times a week, with complete attention and, preparedness to the best extent that I can manage. 

Knowing one's own boundaries and limits, as best as one with this can, is a crucial element of the juggling. 

Responsibility, being good, always comes first in my mind, I know it doesn't for many.

I agree with the first paragraph in the following article, in link below, and think it should end with this addition; 'and even if that behavior
is good.'  http://medicalxpress...-patterns.html  (totally unrelated to topic though)

 

To have known what I had/have as a child or teenager, even young adult, is an impossible thing for me to imagine; skateboarding could not have prepared me better, or helped me adjust along with, (I like to say, because I know it did) for Cataplexy though.  Reflexes (of the body-positioning, gauging of angles, knowing perimeters-) without reflex (of
the muscles)!  Have definitely had some near not good falls, hit another once in their knee, with my head as I awkwardly went down immediately like a ragdoll; that scared me, but it was in my kitchen and I was joking around...

To imagine reading this all, to go back and have no experience of it personally, somehow this all would seem impossible to comprehend. Narcolepsy with Cataplexy is complicated, to put it lightly.

 

I can say basil44 that I've had days and periods of time, where I feel sort of drunk physically (not mentally), sort of staggering as I walk and/or feeling slightly almost woozy like. Also, at times the cloud like heavyness and/or wearing weighted clothes-like physical effects occurs.  Not tiredness, not fatigue, but quite off...\

 

Best Wishes.



#8 XxSweet6LovexX

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Posted 17 March 2013 - 10:59 PM

I experience it too but it doesnt seem to be cataplexy........happens alot to me, sometimes for no reason.