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cataplexy slurring xyrem nuvigil boyfriend relationship communicating help

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#1 AnnieJoy

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Posted 09 September 2013 - 03:36 PM

I am afraid of losing my boyfriend.
He has been so supportive, and has been right there for me during this whole process. But my
 cataplexy is getting worse. This, along with college, job searching, and his personal going-ons, I have been losing in the communication department.
I had a fall the other day for the first time, knee gave out beneath me. It scared him. And it scared me more.
And then yesterday while we were talking about some stressful topiocs, I froze when he asked me a question. It was simple, and slightly unrelated, but important, and I just lost it. Froze, became disoriented, confused, silent. I could see that this frustrated him and I wanted so much to fix it. I tried to apolagize, but he said it was fine.
It wasn't.

I don't want to blame this on cataplexy.
But it happens a lot. I get drained after social interation.
I tense up to any kind of confrontation and utypically fall asleep shortly thereafter. The slurring overcomes me.

And I just screwed us over in the communicatioins department.
 

I do not knnow what to do to help make it easier to communicate these difficulties.
I do not want to lose him, but I know that it is hard being in a relationship with someone like me.
I know that.
But I will do anything I can to make it easier. SO,

I need tips, hints, help, anything.

 

Doc is abou to switch me to Xyrem most likely after a 3 week trial of a double nuvigil dose that didn't work out so great. Maybe that will help with any kind of cataplexy slurring, and when that goes away I can focus on any other underlying things. I just don't know how to move forward when my brain just quits on me when I need to be 100% present.



#2 sk8aplexy

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Posted 09 September 2013 - 08:09 PM

Not sure what to say, Cataplexy is rough on a person.

Social settings / interactions can be so difficult, especially when revved up / heated, or caught off guard, or after a long stretch of activity/interaction/excertion...

A few things you could try (not sure any will/could help).

-when entering conversations that will be intense/stressful/difficult, try an sit, have them while sitting.

-perhaps say you need to go to the bathroom when you note yourself becoming revved up / heated.  I find that if I lie down and just sprawl out my limbs, even for just a few seconds, it really helps my strength remain and/or regain...

-(this goes with the above) try to clear the mind, try to focus on breathing, remain grounded with your own; this is especially necessary when Cataplexy hits (do not fight it, or it may hit harder).

-speak slowly and/or, especially, pause and think out the response/s prior to saying them.

-depending on who you are speaking with, if they're understanding and know you well, perhaps have some signal defined, to let them know that you need a minute and/or a few seconds.

 

 

If they're not understanding, then it's their fault and not yours, it is out of your control to be able to entirely prevent and/or control the Cataplexy; unfortunately, many people just are not willing to understand and/or/nor able to begin to understand.  Some are overly cautious and others are viciously non-cautious, some hear what you're saying when you describe Cataplexy or try to set 'your' necessary parameters, and others hear none of it.  For some, after seeing a collapse or a real intrusion of Cataplexy, they can become very understanding, others can become entirely scared and/or put off.

 

-Hope something there may be somehow helpful? 

And, I hope you find some relief and that things work out well.



#3 Ferret

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Posted 09 September 2013 - 09:40 PM

There are partners in this world who are there through the good, the bad and the ugly...others are only there for the good time. You are going through a very stressful time in your life on many fronts and that only makes the cataplexy worse. I sincerely hope that the Xyrem works for you. Hang in there!
Trying to have a fight in your fragile condition is a recipe for disaster...been there, done that. The sympathy and concern elicited by the collapse only made me madder at my inability to get my point across and lead to more collapses. Frustration without end.
For me, it is better to walk away from a confrontation and write a letter detailing my thoughts and hand it to the person. Of course, that was before everyone had a personal computer and it took a little more time. So, even if you do it via e-mail...put it in draft and read it again before sending.
Even now, after 32 years together, we do the occasional "tub talk". It means that you pick a quiet time, away from distractions and QUIETLY state what's been bugging you...then you pull the plug and let it go down the drain and it's over. Flying off the handle is never productive even if you don't have N with C.
Be calm, be cool and be strong.

#4 ironhands

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Posted 09 September 2013 - 09:57 PM

Hearing this kind of thing really, really gets to me.  Not having cataplexy makes it hard for me to empathize.  Being absolutely terrible with relationships makes it even harder.  I can't offer advice on love, or keeping a couple together; in that respect I've failed pretty hard.

 

What I do, is fix computers, and most other simple logical problems.  When thinking about this problem in those terms, a solution seems to present itself in my mind.  Do you live together?  If not, there may be a relatively easy solution to express how you feel, deep down, and improve things.  

 

Communication error?  Change the protocol.

 

Email.  Text messages.  Notes.

 

All of these options would allow you time to express how you feel at your own pace, without having to worry about having an attack.  If you are overcome, you can stop for a moment without worry.  While it is true that part of the problem is not being able to discuss some of the more serious things face to face, it would hopefully accomplish more good in the long run.  I see it like using a crutch.

 

Keep in mind, many of these could also be the result of generalized stress and anxiety making things worse, and not just the C.  Time (and possibly the med change) may help things get back to normal in a few weeks.

 

I'm hoping things will improve for the two of you in the weeks to come.



#5 DeathRabbit

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Posted 11 September 2013 - 03:13 PM

You poor thing. I know when me and my GF get into a fight or anything happens to cause lots of anxiety, I sink into a stupor and can't think straight or even crooked for that matter. It's like my brain becomes completely incapable of cognitive reasoning. I wonder if this is a cataplexy like response in myself. My best advice would be to just make it clear that you love him and that you know he is having to sacrifice a lot to be in a relationship with a PWN. Perhaps if he knows you know he's in a tough spot, it will help drive it home that you really do care about him.



#6 ironhands

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Posted 11 September 2013 - 03:41 PM

Isn't that just stress/anxiety when you can't function like that?  If that's a form of C, it's been happening all my life, and the feeling I'm shrinking coupled with it at times.



#7 AnnieJoy

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Posted 11 September 2013 - 04:11 PM

ironhands, some people with cataplexy drop things, lose their balance, or droop their head after an emotion trigger. I slurr my speech and become disoriented with the emotions I mentioned above.



#8 AnnieJoy

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Posted 11 September 2013 - 04:20 PM

Thank you Death Rabbit.Shortly after this post was written, he did leave. But not for very long.
He thought he was helping by leaving, but of course the opposite was true.
However, after much discussion over messaging we decided to meet in person. We are going to rebuild.  Fix some things.
I could still use all the help I can get with the communication.

Thank you for your help.

 



#9 sk8aplexy

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Posted 11 September 2013 - 04:39 PM

Glad things seem to be recooperating.

 

As for Cataplexy, I do think it can have a very invisible / underlying effect, that is whenever there are strong emotions involved; be it stress/anxiety/nerves/tension/excitement/anticipation/surprise/moods...

Gonna go pretty deep here.

There's been so many conversations with people in the past, prior to discovering the Narcolepsy with Cataplexy for what it was, due to the collapsing I eventually sought confirmation/understanding/help. 

The conversations though, were based on interpersonal communication difficulties and specifically in regards to like dating / relationships. 

For me, I've always had difficulty in approaching and especially in pursuing a relationship, even more so in say making the first kiss.  Such, is obviously something everyone has difficulty with to an extent, there are nerves/nervousness/anxieties involved but I can't help think there is a Cataplexy effect involved too, to some extent at times. 

Think of how people relate to being tired, it clearly is not a broadly accurate comparison. 

Basically though for me it came to a point in my late teens, that I sort of decided I didn't want to, nor could be, very eager when it comes to dating and pursuing relationships; I figured hey, one day something will click and things will come together in their own manner without all the (what I'll call) games and/or fronting [I'm still waiting, but hey I'm patient]. 

When I began to learn about Cataplexy I didn't think there could be a connection, but the more that I look back, read of others experiences, and/or that I experience any real bond/connection, at those moments it is like a mental paralysis and speech goes flawed. 

Not saying that it couldn't mainly just be nerves, but I do think there is some large likelyhood that it/there is another variation of Cataplexy. 

As a child I couldn't lift my arms while being tickled, which is to say I've had Cataplexy since as far back as I can remember, and my parents have said I would sometimes stop laughing and stare off blankly, when they tickled me as an infant.

I was 28 before I 'knew' what Cataplexy was...



#10 Potato

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Posted 11 September 2013 - 10:45 PM

First, I'll give a +1 to writing letters, e-mails, etc. since that allows you to fully form your thoughts in an environment that isn't really time sensitive and communicate those to him effectively.

 

Second, what DeathRabbit describes is closer to dissociation rather than cataplexy. It's very common in people with anxiety, especially in social settings. It has some pretty distinct sensations that go along with it, like the feeling that you're sinking into yourself, or looking out onto the world through a tunnel. When I first started having to deal with public speaking I would get it a lot. That sucked. Anyway, if it's the case that anxiety precedes it and there's no associated muscle weakness, dissociation should be considered first before cataplexy. Thankfully dissociation typically isn't a big problem in most cases. The anxiety it's associated with might be, though.



#11 DeathRabbit

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Posted 12 September 2013 - 09:33 AM

First, I'll give a +1 to writing letters, e-mails, etc. since that allows you to fully form your thoughts in an environment that isn't really time sensitive and communicate those to him effectively.

 

Second, what DeathRabbit describes is closer to dissociation rather than cataplexy. It's very common in people with anxiety, especially in social settings. It has some pretty distinct sensations that go along with it, like the feeling that you're sinking into yourself, or looking out onto the world through a tunnel. When I first started having to deal with public speaking I would get it a lot. That sucked. Anyway, if it's the case that anxiety precedes it and there's no associated muscle weakness, dissociation should be considered first before cataplexy. Thankfully dissociation typically isn't a big problem in most cases. The anxiety it's associated with might be, though.

I don't think it's dissociation, just because of the overwhelming rush of fatigue. I've had dissociation happen in addition to the feeling I was describing, though. That's even worse. I had to leave work once or twice when that happened. But the reason I say it could be cat is that Dr. Mignot is now saying that cataplexy doesn't necessarily have to involve physical signs and that most PWN spend the majority of their time in some degree of cataplexy, which is responsible for a lot of the N symptoms besides the EDS.



#12 AnnieJoy

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Posted 12 September 2013 - 11:12 AM

I do know my slurring is cataplexy. I am saying words, but they do not work, I cannot speak. I explained it to my doctor the first day I came to his office, and he got a smile on his face "that is the best description of cataplexy I have heard in 15 years of being a sleep specialist." And that was the first time I had heard that word. 

He also explained to me that anxiety can be a side effect or a symptom of Narcolepsy. That for every PWN that came in to his office, about 80% of them had also been diagnosed with some sort of anxiety, depression, or obsessive disorder previously. I can see many reasons why and support for my own experiences just reading around these forums. Whether it is a side effect of the lifestyle of a PWN or a symptom of the condition itself, it is evident that it is a common and unifying experience that must be recognized by doctors, patients, family, and as I have learned, significant others. I know part of what i experience is cataplexy. And yes, the triggers are amplified by my experience in angst. I have become a practiced worrier, an expert in apologies, and a pro at panicking. But the slurring, freezing, mind black outs, and overwhelming all of the sudden fatigue is something that appeared when I became sick, and they finally considered narcolepsy. 
It explains my issue. 

So I know what it is to some extent. Cataplexy. 

But I need to know what to do with it. Identifying is only as good as the word is long and the research is practical. 

I need to know how to push past it to better my relationships with people, and lessen my anxiety triggers to better my relationship, with myself. 



#13 sk8aplexy

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Posted 12 September 2013 - 01:02 PM

Not sure this is helpful, as it's just reflecting in hindsight upon my own experience; and I still in many ways, some might and/or would definitely say, that I hold myself back from doing a lot.

But basically, for me it came down to what was gradually, continually, awkwardly, both consciously and subconsciously, adjusting to it.   That was, over the, many, many years of having no clue.

I believe we all who live with it, do this; and those without Cataplexy do it in terms of each other symptom to an extent as well.

Once I grasped the condition for what it was though, and had a name for it, I was able to begin learning more and more, trying to understand it.  Such defiinitely did help me to learn, to juggle it better.

Yet, it is a juggling act, and there really are no rules to it.  Staying grounded, keeping honest and with my mind attentive, as possible as I can maintain, is huge...

Going deep:

I look at it much like 'Skateboarding' in that to learn is one step, to control it is the next step and then to do/learn tricks is another step, there are endles variations of terrain which all have a different learning curve;  but what has to be remembered is that there is no 100% consistency or possibility of there not being falls, now and then, sometimes more often then other times.  Like playing an instrument, you can only learn through practice, focus with effort and basics come first, there's strange elements of perhaps focusing too hard causing difficulties or the body just not responding accordingly yet the focus is pinpoint.  There's again, very much elements of both the conscious and subconscious playing into it, together; along with much more.

 

The main point of what I'm trying to say, I think is this. That learning through experience, reflecting upon the past with a grasp along with understanding of the condition, recognizing your own boundaries and then comes juggling within them, fine tuning to an extent, the boundaries which you must stay within; of course, eventually comes being able to cautiously step outside of them and/or willingly taking chances...  

 

Life is full of complexities within society/culture, living expectations/requirements/standards, career/s, interpersonal relations/family/friends/co-workers/medical realm, personal health/happiness/grounding. 

And, Cataplexy unfortunately rears its head, within most of all that, for some of us...



#14 DeathRabbit

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Posted 12 September 2013 - 02:23 PM

One thing I meant to add is if you guys do switch to texting/writing more as has been suggested, be sure to use emoticons et. al or language that makes it clear what you mean. Me and my gf hardly ever argue in person, but we've had more arguments online than I can count just because someone misunderstood what someone said or didn't realize that they might be going a tad too far without the feedback of actually seeing the person, etc. We've instituted protocol where if we ever get in a fight, we skype later that night and hash it out. She lives an hour away so I only get to see her a few times a month.



#15 AnnieJoy

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Posted 12 September 2013 - 02:34 PM

Maybe this is just a bad week for conversation in general seeing as that my mom and I just got in a fight. We rarely have explosions, and when we do, I am not the one that is fighting. As I have said, I fear confrontation. Loud noises during discussion, body language, it all adds to the anxiety leading to a cataplexy episode and last night there was yelling. A lot of it. The kind of "I'm yelling so you have to listen even if you can't talk," kind of yelling. 
Of course I couldn't freaking talk. 

And moments like those do not make me want to fix situations, they make me want to not feel. Maybe that helps with the cataplexy. Reaction? What reaction--who cares? 
I am sorry to sound flippant. 
I do not mean to complain or vent on this forum, I am really just looking for suggestions, because in the last few months it seems all of my closest relationships are falling apart in some way or another, and it's not just because of the college transitions... I've got to learn to change some things. 

I've just need help finding solutions. 

I liked the idea about having more written communication, but I agree with Death Rabbit. A situation with my boyfriend just after this post was written happened all on text because we would not see each other for many days otherwise. It was horrible. Not just because of the subject, but not being able to see/hear inflection, body language. All of those things were very important to understanding the meaning behind the words, and though it would have been, possibly harder to hear it in person, it would have smoothed over the misunderstandings. We met i person the next day, and though it was difficult at times, we took it slow and I was able to clearly listen to him, and then talk with him as well--quietly... and annoyingly slow... but still. We decided to work on some things. Communication and branching out socially being a couple of them. Insecurities from the anxiety had certainly come into play for me at least, and I became kind of a hermit. Not good. 


I look forward to when I can work out some of these things. 
I know it will take time. 


Writing is a good one... but it seems also just having understandable people in your life is another. 

I do not know if I can heal things with my mom. I love her to death, and she says she understands, she has made much effort and sacrifice, but when it comes to daily conversation, and disputes.... nothing. 

Sigh. 



#16 ironhands

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Posted 12 September 2013 - 03:55 PM


I do not mean to complain or vent on this forum

 

Do it, that's one of the reasons it exists.  More room out than in.

 

I'm really glad the writing helps, not the greatest solution, but, it has its function.  For me writing is more effective because I'm pretty robotic, there isn't much in the way of intonation or inflection, and because of asshole resting face, more often than not my words are heard as hostile.  Unless I walk around with smilies on a stick for each social situation, text is my best option, and even then, it still happens.  That's why I use the :P as much as I can.



#17 sk8aplexy

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Posted 12 September 2013 - 07:11 PM

Hey DeathRabbit, I'm very curious to what you said regarding Dr. Manuel, saying such about Cataplexy being at times non physical/subtly frequent; that is possibly quite dramatic, in some odd way of looking at it, for me that sounds possibly very accurate to an extent.

Can you try an provide a link to where ever you read and/or saw that?



#18 DeathRabbit

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Posted 16 September 2013 - 10:14 AM

I don't remember exactly. I just remember reading that and thinking that it explained a lot.



#19 AnnieJoy

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Posted 16 September 2013 - 11:34 AM

Yeah, he does have new research. I'm kind of annoyed right now because it is difficult to track down. 
http://med.stanford....t later today: http://med.stanford....blications.html



#20 DeathRabbit

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Posted 16 September 2013 - 02:08 PM

Do any of you all just randomly have your brain quit? Like it just decides to stop doing brain things. I was in a meeting today talking and all of a sudden I completely lost my train of thought mid-sentence. It was a small meeting so I wasn't anxious and I wasn't particularly tired either. It was maybe 30 minutes after I had my lunch time nap. Even now I feel like it's just full of static. Like someone shut off the cable all of a sudden to my mind's tv set.







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