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Pain Of Narcolepsy & How To Conquer It ?


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#1 MMK

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Posted 19 April 2010 - 02:40 PM

Hi Everyone,
Last academic year went into disaster, topper became repeater. No one could understand what was going on. Except Sleep nothing was coming in way. I was trying to do work but could not. It was fatigue like symptoms or sleepiness.

Previously treated for Depression . Finally shifted to Modafinil, REM sleep controller Anti Depressant.

Presently on 1)Stimulant (Modafinil) 2) To control REM sleep (Nortriptyline) 3) To stop fragmented sleep (Nitrazepam)

I want advice how to achieve my goal. Narcolepsy ruins life. I got one year experience. Every front I could not achieve.

People tell philosophy , Except keeping your mouths shut and listen nothing can be done.

It has devastate my entire life. No control on business, no control on education , no control on sleep , no control on other things.

After my parents death it was biggest downfall I ever had.Not married , no sibling, No one to understand me. When I say stimulant Modafinil no one understand what it is? When say Narcolepsy no one understand me.

How to conquer life back is only thing which comes in my mind. Today sleepy in morning while taking hot water for bath could not take reflex decision and hot water burnt my leg. Before that I was having eye drop lead falling.

Can anyone guide me. or at least share your thing.

There is no disease in this world which can stop Man's desire to do what he wants to do.

Are we forgetting that Helen Keller was also handicap. Or we are too much engrossed in thought we cannot do.

Whether life is at stake, relationship is in danger, marriage in danger, life in danger , How we can stand up and say "Yes we have Narcolepsy ,But it is small thing of life" . How we can prove ourself again to world "Yes , we can do it"

How many days we should beg sympathy from others?

How many days we should give justification of failures?

Why we cannot do what we want to do?

Why we are treated as joker. And other jokers are rejoicing us over their stupid thoughts about us

I wish to ask every member in this community to reply and say how we can prove our life. is not burden or waste of time.

Lets motivate each other and lead life to overcome our hurdle.

I am raising this voice here because except you all no one can understand me. You all are sharing same pain which I am going through. You all are victim of this devastating fire.

Lets stand up . Please just by crying nothing can be achieved. Lets remember the great achievers who achieved their goal in spite of being handicap.

Lets share tactics we used and worked out some solution managing our symptoms.

If there is no precedent in history or very few then we ourself let keep precedent for others

I hope everyone will raise your say and interact with us. Instead of just by walking together on funeral procession of our life. Let us all work and convert our journey as happy journey to life ,& like procession of new happy married life.

Hope you all join my new married life with Narcolepsy..................

Although my profile is giving my nick name in coming days I will put all my real photo & correct details. Why we should be ashamed of thing which is not in or was not in our control.

It is not our fault , but if we keep crying then surely it is.

When problem comes only 2 things take place. Problem sit on you. or you sit on problem and convert into opportunity.

#2 petitelinguiste

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Posted 14 January 2011 - 03:27 AM

Hi Everyone,
Last academic year went into disaster, topper became repeater. No one could understand what was going on. Except Sleep nothing was coming in way. I was trying to do work but could not. It was fatigue like symptoms or sleepiness.

Previously treated for Depression . Finally shifted to Modafinil, REM sleep controller Anti Depressant.

Presently on 1)Stimulant (Modafinil) 2) To control REM sleep (Nortriptyline) 3) To stop fragmented sleep (Nitrazepam)

I want advice how to achieve my goal. Narcolepsy ruins life. I got one year experience. Every front I could not achieve.

People tell philosophy , Except keeping your mouths shut and listen nothing can be done.

It has devastate my entire life. No control on business, no control on education , no control on sleep , no control on other things.

After my parents death it was biggest downfall I ever had.Not married , no sibling, No one to understand me. When I say stimulant Modafinil no one understand what it is? When say Narcolepsy no one understand me.

How to conquer life back is only thing which comes in my mind. Today sleepy in morning while taking hot water for bath could not take reflex decision and hot water burnt my leg. Before that I was having eye drop lead falling.

Can anyone guide me. or at least share your thing.

There is no disease in this world which can stop Man's desire to do what he wants to do.

Are we forgetting that Helen Keller was also handicap. Or we are too much engrossed in thought we cannot do.

Whether life is at stake, relationship is in danger, marriage in danger, life in danger , How we can stand up and say "Yes we have Narcolepsy ,But it is small thing of life" . How we can prove ourself again to world "Yes , we can do it"

How many days we should beg sympathy from others?

How many days we should give justification of failures?

Why we cannot do what we want to do?

Why we are treated as joker. And other jokers are rejoicing us over their stupid thoughts about us

I wish to ask every member in this community to reply and say how we can prove our life. is not burden or waste of time.

Lets motivate each other and lead life to overcome our hurdle.

I am raising this voice here because except you all no one can understand me. You all are sharing same pain which I am going through. You all are victim of this devastating fire.

Lets stand up . Please just by crying nothing can be achieved. Lets remember the great achievers who achieved their goal in spite of being handicap.

Lets share tactics we used and worked out some solution managing our symptoms.

If there is no precedent in history or very few then we ourself let keep precedent for others

I hope everyone will raise your say and interact with us. Instead of just by walking together on funeral procession of our life. Let us all work and convert our journey as happy journey to life ,& like procession of new happy married life.

Hope you all join my new married life with Narcolepsy..................

Although my profile is giving my nick name in coming days I will put all my real photo & correct details. Why we should be ashamed of thing which is not in or was not in our control.

It is not our fault , but if we keep crying then surely it is.

When problem comes only 2 things take place. Problem sit on you. or you sit on problem and convert into opportunity.


I can relate to this entirely. And as much as my narcolepsy has ruined my life, I guess I blame society more. I don't view myself as "sick" or "disabled", just different. Now I feel justified in all of my behaviors that my family insisted I was capable of changing all these years. I just can't coexist with the 9AM-5PM world. And that doesn't bother me all too much. But I'm still going to keep fighting to finish my education.

#3 doinmdarndest

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Posted 16 January 2011 - 05:20 PM

I can relate to this entirely. And as much as my narcolepsy has ruined my life, I guess I blame society more. I don't view myself as "sick" or "disabled", just different. Now I feel justified in all of my behaviors that my family insisted I was capable of changing all these years. I just can't coexist with the 9AM-5PM world. And that doesn't bother me all too much. But I'm still going to keep fighting to finish my education.


perhaps it is possible for us, those pwn (including myself) who find ourselves in dissagreement w/our respective MD's to work together; the whole group of those best fit on a case by case basis can 'rep' (as long as adequate consideration precedes the representing) in approaching the MD of one, vouching as substantively as possible for the position of their patient. this we could do with zeal and tenacity in as much as is neccessary. "all for one and one for all"

-doinmdarndest

ps special thanks to big dog. his critique of my rhetoric is the kind of thing i find invaluable for my endeavor.
i hope i don't seem full of myself. i find myself insignificant-except to myself, of course. i find my vision, the "all for one and one for all" program a thing it is my duty to put on the table as best as i can. from there hope might be given the hopeless. effective treatment as well. for those w/heart condition, this cannot involve stimulants, particularly at higher doses-yet i make clear, just as i should I AM A CONSTRUCTION WORKER....NOT AN MD only an MD can give authentic medical advice.

#4 MMK

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Posted 17 January 2011 - 11:31 AM

Why don't you start a new thread called / Comments on Stanford and Dr. Mignot. May be they will read it or ignore it. I think that will be good idea. The way Narcolepsy Network have quarterly magazine we may send quarterly letter of complaint to them. So in one go they can understand what people feel about them.

#5 MikieC

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Posted 16 March 2011 - 12:38 PM

There is no disease in this world which can stop Man's desire to do what he wants to do.


This is an old thread, but I like the idea. Too bad more haven't responded...answer me why.

How to begin...maybe it sounds a little like "tough love" but I say Cowboy up!! I've always believed that you make your own reality. You know how I felt when I was diagnosed?...relieved...AHAAAA, finally...I'm not lazy, I'm not crazy...It's not my fault that I fell asleep, that all these strange things happen to me. Call all the ex-girlfriends...you see, I have N. But then what, that's not enough, it can't just stop at that. Now I know where it comes from and I'm going to find a way to move ahead.

I'm not trying to trade stories about who's had a harder life, but I've had it tough in many ways. Lots of loss, disappointments, hardships, etc and everyone thinks that he/she has it the worst. It doesn't matter. There are really only 2 choices: give in or get up. I choose to tackle the obstacles, to try to overcome the hardships, to scratch and claw and crawl my way out of the hole. It's my will to do so and succeed or fail, no-one and nothing in this world is going to stop me from trying. My will is the only thing that can't be taken from me and I cherish it.

Is it difficult, of course you all know the answer to that. But what in life is worth doing that isn't. What worth is there in doing the easiest thing. What satisfaction will come from coasting by and allowing life and the things in it to rule you. The real satisfaction is in accomplishing what you want despite the obstacle.

I want things...happiness, normalcy, comfort, love, laughter, true friendship and more. I will never stop trying to get the things I want and one way or another I believe I can. I will get what I want or die trying and if I fail, it's no fault but my own. I will never ask for sympathy, how will that help me. If others don't want to understand...to hell with them, they're not worth it...a true friend will. I won't ever place blame on anything but my own lack of will to continue on the path that I choose. Sometimes I cry, sometimes I feel like it's too much, but I won't let it overcome me. Similar to when I wake up in the morning and I can't move, I start saying in my head...get up....get up now...GET UP and soon I'm shouting it GET UP.

So make the choice and get on with living or get on with dieing. But don't ever tell me that you CAN'T, there is always a way.

No-one will truly know what I overcome but me and that's enough. I will champion my own life by whatever means I can because the meaning of life is in the journey, and at the end I will rest easy knowing that I never gave up.

"The true champion is the one who gets up - even when he can't"



You might think I'm nuts or too harsh, but I'm doing pretty good so far...and I have a ways to go...but I won't stop.

#6 doinmdarndest

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Posted 06 June 2013 - 03:18 AM

MMK-

 

I hope you are well and that this finds you in good spirits.

 

I know I am not the only one here who regards you in high esteem;  yours is an outstanding contribution to the betterment of life for pwn in india.

 

give us an update soon,  if you can.



#7 doinmdirndest

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Posted 26 August 2013 - 03:24 AM

I remember you, hope you are well. reply if you can.