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Has Anyone Ever Been Cured Of Narcolepsy?


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#21 steaks

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Posted 26 October 2013 - 03:10 AM

You forgot to mention that after the 72 hours, that your spouse/friends/family/teachers harass you for years about how lazy you are.

Heee heee!!! You guys are so funny, and so great! That's what I thought - everything I've read has said that N couldn't be cured, but I wanted to make sure I wasn't missing anything. I wonder if it's because it's sleep that's affected in N that makes the general public so sure that they are experts on both what ails us and how to cure it. Because everybody sleeps, and everybody has a bad night now and again, and so maybe folks figure they know all about it. Creatine, Coca-cola, acupuncture, more exercise, whatEVER.... Maybe after I've gotten used to the N diagnosis and lived with it for awhile, I'll be able to just laugh and shrug this stuff off.

After I got home, I came up with the wicked repost that I fantasized it would have been nice to have on the tip of my tongue: I could have told my acupuncturist-acquaintance that since she knew how to cure N, she'd better get on the phone to NIH and Stanford right away! Because she was going to do something that had never yet been done in the history of medical science, and that there are 150,000 PWN in this country alone who were going to be CURED, FINALLY, based upon her radical new insight!! AND WE'D ALL BE LINING UP! Sigh.... But it's the kind of thing that plays better in fantasy then reality, at least in this context. But maybe I'll remember it for some other person ready to cure narcolepsy that I just don't really like.... wink.gif

I read somewhere reputable that a normal person would have to go between 48-72 straight hours without any sleep at all, before he/she would feel the same kind of fatigue that a person with N (without effective meds) feels every minute of every day. I wish I could remember where I saw that. I've been relating that to people as I go around educating folks about N.

I start by asking if they've ever stayed up all night, and they say, oh,yeah, I know how you feel. I get them to tell me about this time they stayed up all night, so that they've got it clear in their minds.

And I say, so then, did you go to work the next day? Most people stop right there, and look surprised, but some people say, yeah, I did this one time. So I get them to tell me all about that, so that they really remember how they felt after 24 hours with no sleep.

And I say, then, did you stay up again all night the second night? And that's where everyone drops out. But I keep going. I say, well, imagine that you DID stay up all night that second night. And then, imagine that you went to work that second day. And they're starting to get it.

And I say, and then, imagine that you stayed up all night again that third night. And then I say, so, you're in the morning of the next day, and you have to go to work. And they look at me, sort of overwhelmed.

And I say, that's how a person with narcolepsy feels, and how their body functions, up until they finally get diagnosed and hopefully finally get some effective meds. Every. Single. Day. For you, to feel this way, you'd have to stay up for 72 hours straight, with no sleep at all. EVERY DAY (which of course is impossible - you can't have gotten your last sleep 72 hours previously 2 days in a row, but I leave that part out).

And once in awhile, somebody says, I thought I understood before, but I didn't.



#22 sleepingmonkey

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Posted 09 April 2014 - 10:08 AM

Hahaha very true, very funny...great way to put things in perspective for outsiders!

 

This morning as I was getting ready for work my bf and I were chatting about a potential cure. I told him that I wasn't aware of anyone being "cured" from it, but that's not to say that isn't the case. He is VERY understanding and accepting of everything, however he also believes that *I'm* not doing everything I *can* to help matters. He is FIRMLY against medications (I am too, though I'm not quite as vehement about it as he is). He is the kind of person that just wants to fix things. He's not very good at consoling, but he can come up with a million and one ways to make a situation better by DOING something.

 

Anyway, so this morning it goes like this;

Him: Have you tried ingesting the 7 things on the list I sent you MONTHS ago?

Me: I don't really think that's going to help me.

Him: Food fixes everything; it will cure you.

Me: Not this. Do people with arthritis get cured from food? Lupus? MS? Chron's? Maybe it makes it slightly better, but there is no cure.

Him: If all the great minds of our world thought like that, just think where we would be (or wouldn't)...

Me: Do you know of a food that will make me produce hypocretin and then stop my body from attacking it?

 

I know he just wants to help. Coming up with solutions is his thing. But sometimes it's just so aggravating.

 

Someone said something about Taurine supplements...I would REALLY like to know more about this! I wonder if my C has gotten worse because I cut out red bull! 



#23 Hank

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Posted 09 April 2014 - 10:29 AM

Please be careful with this little dance you two are doing here. Pretty soon, he may find you unwilling to try and you may find him annoying and uninformed.

 

When things get to that point, they will spiral pretty quickly. The relationship can be past the point of no return before you even realize it is in trouble.

 

It would be a good idea for your BF to meet with your doctor and educate himself on the illness. Maybe he could join this forum and propose his "cures" before trying them out on you.

 

As long as he keeps trying to "solve" the problem, he will be ineffective at helping you "manage" the problem.

 

Some couples counseling with a PhD would be a really good idea is you want him to be around long term.



#24 sleepingmonkey

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Posted 09 April 2014 - 11:13 AM

We have a great relationship, and because he understands me - and vice versa - we know where the other person is coming from when they say what they say, for the most part. He's older, and foreign, so his thoughts on western medicine are just not positive ones. I get it, and I get his perspective. I shouldn't be so obstinate and should just try what he says, just so he can see that I respect his opinion (which I do), and that I'm open to suggestions. Anyway, that being said, I do think it would be great for him to come to doctor with me for my next visit. And, I really like your wording on helping "manage" the problem vs "solve" the problem. Probably the bulk of people on here: I just want to be able to function on a daily basis.



#25 DeathRabbit

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Posted 09 April 2014 - 01:21 PM

Him: Food fixes everything; it will cure you.

You handled that better than I would. I really have to try hard not to strangle people when they say *BEEP* like that. Spoken like someone who's never had to worry about more than a tummy ache all his life.



#26 Ferret

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Posted 09 April 2014 - 09:26 PM

Eastern Medicine was way ahead of Western Medicine long before Columbus sailed. Food can't "cure" everything but it can sure help you manage symptoms.

In another thread, sleepingmonkey, you said you quit drinking Red Bull...why?...it's interesting stuff...

http://energydrink.r...dients-red-bull



#27 sleepingmonkey

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Posted 10 April 2014 - 11:07 AM

Since my mom's cancer diagnosis we have really been delving into improving her pH by eliminating acid causing foods and drinks, and inundating her body with alkaline forming foods. The thought is that cancer has a hard time surviving in an environment that is slightly more alkaline than acidic. If it can help cancer, certainly it can help preventing other problems. Red Bull is really acidic and makes it impossible for me to get my pH anywhere NEAR 7, let alone 7.35-7.45. Also, I drank sugar free Red Bull, which has aspartame in it...horrible, horrible HOR-RI-BLE.



#28 Ferret

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Posted 10 April 2014 - 01:49 PM

Thank you...now I get it



#29 purpley

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Posted 29 April 2014 - 12:54 AM

I shouldn't be so obstinate and should just try what he says, just so he can see that I respect his opinion (which I do), and that I'm open to suggestions.

 

Some people prefer to come up with practical solutions, and others to be empathic and offer emotional support.  I'm not saying one is inherently better or worse, but they're different.  Stereotypically men fall into the first category and women the second, but it absolutely crosses gender lines.  Anyway, point is, this is my suggestion -- your mileage may vary and you should take only what seems useful from it, since of course I can't know what your entire relationship is like or even how long you've been together:

 

1.  If you haven't done this yet, talk with your BF and tell him that sometimes you tell him things just because you want emotional support, and not because you need a solution.  This actually may be news to him!  I had someone tell me in a puzzled tone when I said that to her, "Well, why are you telling me these things if you don't want me to help you fix them?"

 

2.  Once you've told him that and had a conversation about it, assuming it goes well and he's interested in improving the situation, when he goes into Mr. Fix-It mode, you can point it out (in a very nice way) because he probably doesn't even notice it, and try to change the dialogue with him in a way that feels better to both of you.  I'm assuming that you're already doing your part of trying to let his "helpfulness" just roll off your back when it gets too annoying.

 

That's it. This can also be done in a defter way with the assistance of a couples psychologist, as Hank astutely points out. It's not specific to the narcolepsy discussion; it's really a fundamental couples communications issue (not an uncommon one, either) that will crop up in dozens of ways with dozens of life stressors over the course of your relationship, and the more stressful things are, the worse of a problem it will be, so it's good to face it sooner rather than later.  If not, chances are good that you can do every single thing he suggests and he'll just keep suggesting more things, because he won't even know it's a problem.



#30 purpley

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Posted 29 April 2014 - 12:56 AM

...And boy, I really should pay more attention to dates on these things, it would probably help if I didn't write posts at 2am.  *sigh*



#31 Ferret

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Posted 29 April 2014 - 06:28 AM

Good advice can never be outdated.

Your advice is very similar to that given in the book "Men are from Mars, Woman are from Venus".

My hubby and I read it together...we laughed, we cried and we tried a lot harder to understand where the other was coming from. IMHO, required reading for any couple.