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#1 AnnieJoy

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Posted 09 September 2013 - 03:15 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 CCPOT

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Posted 09 December 2013 - 01:11 PM

My advice would be just to not take it so seriously. Try and relax and just always remember he is there supporting you. I understand where your coming from. i have an attack about 4 times a day if im with friends. Ive learned to just kinda laugh it off...and trust me they do to



#3 Hank

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Posted 09 December 2013 - 07:47 PM

Nuvigil will not decrease your Cataplexy. Emotional stress will increase Cataplexy.

 

Are you on anything for Cataplexy right now- like an SSRI or SNRI. Medication is the only thing that will decrease Cataplexy.

 

And if this is an emotional time for you right now, consider the wisdom of starting on Xyrem. It is a process that cannot be hurried and you will be best off beginning Xyrem during a time of low stress/demand in your life.

 

Take everything slow. Emotional stress makes all of our symptoms worse and then we are less able to manage our emotions.

 

Practice good self care, lots of rest and live a low-drama life. Easy does it.



#4 exanimo

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Posted 18 December 2013 - 09:47 AM

I'm sorry to hear you are so stressed! Stress just makes everything worse - I've noticed my cataplexy slightly increasing with the holidays coming and with an increase in my workload right now.

Hank is indeed correct - if you are only taking Nuvigil, it will not help with the cataplexy. SSRIs are the most common treatment, and will often be combined with a stimulant (such as nuvigil). SSRIs are known to suppress REM which is why they are effective at treating, or at least controlling to some degree, cataplectic episodes.

I also agree with CCPOT- don't take everything so seriously. This is especially hard to do in times of stress and we often tend to look at things with tunnel vision - and often an all or nothing attitude. But keep your mind open and remember that this is only one day and it means little in the long run.

It's unfortunate but we all know there is no cure for Narcolepsy. This means we will all be dealing with it for the rest of our lives. And so you must take the time to remember that things are always going to be difficult, but also that you have the power to change how you deal with situations. And a relationship is very similar; either you are in it for the long haul or you aren't. If you choose to make your relationship long term then you must also remember that just like with N, there will be hard times. It's how you come up from them that truly matters. This is where not taking everything so seriously truly helps. Because it's really just another day, and you have a lifetime ahead of you!

I listened to a song earlier, and the chorus goes like this, "falling is easy, it's getting back up that becomes a problem." And it really is true- we all trip and we all fall (cataplexy!) but it's the getting back up that easily becomes the hurdle we must get over. Takes time of course, but as long as you address situations that come up and move forward, the sun will always rise tomorrow :)

Final suggestion: sit down with your bf and tell him how you feel. Obviously try to make this as unemotional and stressful as possible. If need be, write him a letter and also explain why you chose to write the letter as opposed face to face (risk of cataplexy of course). It sounds like you are having a hard time adjusting (as many if us do and it's not a quick adjustment by any means) and also that you may be questioning your relationship. Or at least feeling guilty that your bf has to deal with the N. It is true that us PWN put a lot of responsibility on our spouses but it is also true that our spouses have made the choice to accept that responsibility. Either they are in it for the long haul, or they're not. You cannot make that decision for him, and if he chooses the long haul it is in no way your fault if things get hard. It is just apart if the grand old plan and it will, eventually, work itself out. Have faith in that :)

#5 sleepingmonkey

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Posted 08 April 2014 - 11:47 AM

There are people who say that Adderall doesn't help C, but it honestly eliminated it almost COMPLETELY for me. I was on Nuvigil first, and then Adderall. Adderall has other side effects obviously, but you have to weigh your options. Personally I'm not for any medication, but that's easy for me to say because my then boyfriend was very accepting and thought it was cute/funny.

 

I do not take Adderall anymore, however I was on it for about 5 months with hardly ANY C (98% of the time I was FINE, at least related to C, though I could still easily fall asleep if I sat down for too long), 30 mg (time released) dose that was a once daily script, though I took it only 3-4x/week. Do know, though, that if you abruptly stop taking meds you could get - what I've just now learned about - rebound C, which is WAY worse and WAY more frequent (at least for me).

 

I know you don't want to hear this, but if your boyfriend isn't accepting of it, then he's not accepting of you. Someone touched on this in another thread, and I concur...N &C has an awesome way of weeding out the people that you don't belong in your life anyway; it does all the leg-work for you. I think this is a good thing.

 

I guess it also depends on the severity of your C. It doesn't seem like what's going on are large "deal breakers." I'm similar. My C is prevalent, but it's not out-of-control. Well, I can't control it, however it's not that bad. It completely fall/go rag doll with happiness, sadness, fear, shock, anger, guilt, tears etc. and it does happen frequently - daily, though not for more than 5-30 seconds each episode. I also get confused easily, zone out, become emotionally & physically drained and need to nap etc. I would say that the more lighthearted you make it, the better. For me, I just laugh it off or joke about it to whomever I'm with. Ohhh you're SO funny you sent me to my knees etc. Heck, at least the people you're with (relationship, socializing with etc.) know that when you collapse, you're experiencing a genuine emotion related to whatever is going on. 

 

The other thing I've noticed, for myself, is that the less I talk about it to people, the better they deal with it. If I use it as a crutch, or I overly explain it, the look on their faces is like WHAAAA. It's just part of who I am. If it happens, I quickly explain that I'm fine, and that my body thinks its sleeping; silly body! It's a quirk. Embrace it, or let it rule everything; those are really the only choices we have. If I seek special attention or I use my N & C as an excuse, I really do find that people (especially those closest to me) are less understanding. Don't over-explain it. Like, what's his deal anyway? What are his issues with it? Has he conveyed to you how he feels about it? Has he said it bothers him? If so, what parts bother him and make him uncomfortable or scared? 







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