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ExPat_jac
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Life again!!!!!!!!!!!!!!!!!!!!!!
« on: Sep 7th, 2004, 11:30pm » |
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Oh dear god...I am alive again!!!!!!!!!!!!!!
Friends, this wekend Ex_Pat_Asia flew to where I am and bough me some new medication his neuro had suggested....
Along with this he bought me Magnesium and Melatonin and bethamethozone (I know I am spelling all this wrong..but wtf)
The new drug is called Nuerontin (hope I am spelling it right), and after a few days of prett heavy "brain fog" I am, for the first time in almost 20 years...PAIN FREE !!!!!
Even when I did not have a full "headach" I would ALWAYS carry around this Kp 2-3 background noise...hell, I had come to the point of accepting it as just normal life.....
Even that is gone!!!!!!!!!!!!
Oh my god...can you imagine what it feels like to wake up AFTER 7 HOURS of undisterbed sleep..AND NOT BE HURTING ???????
To go a day with NO PAIN what so ever ????
I can not even put into words what this feels like to me....to be NORMAL. To be able to THINK again!!!!!
Now..it is not perfect...one or two headaches have managed to sneak by..including a VERY heavy Kp 9 or 9.5 the other night, but hell...I can deal with that if it is only every once in awhile......
Is this how normal people feel 
I am hoping up and down all over the ofice..no one can even begin to understand how I feel!
I am...alive once more...
Ex_Pat_Asia....thank you...
from the very bottom of my heart...thank you....
To give hope to a person is the greatest gift I can think of....
Thank you.
To the rest of you on the board...do not give up hope. This may not work for you...but at least it can show that there can be hope.
And after 20 years of never feeling no pain, to wake up pain free is like being blind and waking up and seeing...
If you can only imagine how I feel....
Thank you.....
ExPat_Jac
hahaha make that PF_ExPat_Jac !!!!!!!
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unsolved1
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Re: Life again!!!!!!!!!!!!!!!!!!!!!!
« Reply #1 on: Sep 7th, 2004, 11:41pm » |
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Great story! Glad to hear it has helped you! 
Too bad it won't work for us all 
Enjoy your PF time !!
PF Wishes,
Unsolved
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ExPat_jac
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Re: Life again!!!!!!!!!!!!!!!!!!!!!!
« Reply #2 on: Sep 7th, 2004, 11:57pm » |
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thats the bad thing about this condition...
there is no "cure", hell I can not even pin hopes on this being solved for me....
hahaha but...I will be selfish for a tiny bit....
Today..I do not hurt.
For me...after 20 years of daily pain....
that is heaven.....
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nani
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Re: Life again!!!!!!!!!!!!!!!!!!!!!!
« Reply #3 on: Sep 8th, 2004, 12:03am » |
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What was the new medication? I'm due to see my GP and want a neuro visit - I can let them know everything I've learned here. My GP is good at letting me take the lead in my treatment. I'm saving this thread to bring with me.
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Giovanni
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Re: Life again!!!!!!!!!!!!!!!!!!!!!!
« Reply #4 on: Sep 8th, 2004, 5:35am » |
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I'm really happy for you!!
Looks like you might have found the right combination. Keep up the good reports.
John 
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ExPat_jac
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Re: Life again!!!!!!!!!!!!!!!!!!!!!!
« Reply #5 on: Sep 8th, 2004, 6:00am » |
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The medication is called "Neurontin".
Your neuro may not be familure with it, and doseing can be a bit tricky from what I've been reading...
Do some net research...I'll look and see if I can find the URL I've been reading...
OK..here are a few...
http://home.tampabay.rr.com/lymecfs/list2.htm
at the bottom of that page are some links...look around and do some reading....
Good Luck..
Just as a quick update...I am starting to shadow box a tiny bit....not *too* bad....but enough for me to know that the beast is trying to find his way back in....guess he is a bit pissed I shut the door on him for a time...
I'm sure the bastard will find a crack and slip back in...but hey...this is better than 24/7 background noise...
Jac
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clarence
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Re: Life again!!!!!!!!!!!!!!!!!!!!!!
« Reply #6 on: Sep 8th, 2004, 7:20am » |
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Jac,
It is great to hear your news. And it was really fantastic for asia to fly there with your meds. I am really happy for you. I hope it keeps working.
Nani,
I was on Neurontin for about 2 years - 900/mg every night before bed. It seemed to make the time between my cycles longer, and the headaches less intense when I did get hit. When I moved here to Scotland the Neuro told me I needed to taper off of it. Not quite sure why, been hit with the hardest cycle yet since I stopped. The thing I had to keep up on was forgetting to take a dose. At the beginning, I would forget once in a while to take the pills, and it screwed me up the next day. It was really difficult to come off of it for me as well. I would start it again though, but the doc says no.
Asia,
Way to be a friend.
Casey
<spelling>
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| « Last Edit: Sep 8th, 2004, 7:21am by clarence » |
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thomas
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Re: Life again!!!!!!!!!!!!!!!!!!!!!!
« Reply #7 on: Sep 8th, 2004, 8:40am » |
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 Tears of joy for you. Thanks ex_pat_asia, that was a pretty cool thing you did. Very awesome.
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E-Double
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Re: Life again!!!!!!!!!!!!!!!!!!!!!!
« Reply #8 on: Sep 8th, 2004, 8:56am » |
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That's what it's all about!!!!
Truly outstanding what we do for one another!
Best to all,
E
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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nani
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Re: Life again!!!!!!!!!!!!!!!!!!!!!!
« Reply #9 on: Sep 8th, 2004, 9:05am » |
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Thanks Jac I already use Neurontin. 300 mgs up tp 3X day. It appears I can up the dosage - though. What I will do though is try the same combination you have tried. It can't hurt right?Thanks so much and good luck to you!!! 
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Others may come and go, but MY power is MINE.
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floridian
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Re: Life again!!!!!!!!!!!!!!!!!!!!!!
« Reply #10 on: Sep 8th, 2004, 9:38am » |
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Glad to hear the pain is at bay.
One caution: betamethasone is a steroid. Steroids can be very useful for breaking an episode, or for chronics to have a less painful transition to other preventives. But they have a potential dark side - taken in too high a dose, or for too long, they can really do a lot of damage. Steroids should involve a taper - the dose is reduced gradually over a period of days or weeks to allow the adrenal glands to resume production of cortisone. Failure to do so can be fatal, and one of our members (Dave E.) is currently in crisis because a doctor completely ignored everything that is known about steroids.
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lionsound
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Re: Life again!!!!!!!!!!!!!!!!!!!!!!
« Reply #11 on: Sep 8th, 2004, 11:53am » |
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Absolutely outstanding !
Yahoo!
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IndianaJohn
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Re: Life again!!!!!!!!!!!!!!!!!!!!!!
« Reply #12 on: Sep 8th, 2004, 9:57pm » |
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Good to hear you're PF 
May it last a looooooooooooonnnnnnngggggg time!
Best Wishes!
John
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Did my brains fall out or is this headache over?
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ExPat_jac
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Re: Life again!!!!!!!!!!!!!!!!!!!!!!
« Reply #13 on: Sep 8th, 2004, 10:44pm » |
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on Sep 8th, 2004, 9:38am, floridian wrote:
One caution: betamethasone is a steroid. Steroids can be very useful for breaking an episode, or for chronics to have a less painful transition to other preventives. But they have a potential dark side. |
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thanks...this I knew...but I wanted a quick ramp to try and deal with the many many (jesus...I'm even writting in this "indo-lish" I have to speak here...haha many many is the way you have to say "alot" here and be understood!) problems I have been trying to deal with...
No O2, No Air Con., VERY high heat (this place is the tropics after all...even ice is not readily avaliable here) no medications....and Kip 7's every day or better...
Shit...I'd risk eatting cat poop if I though it would help...I was dieing here....so, yes, I know there is a dark side with the betamethasone , and I am working out a taper to deal with it...
Now, the bad news... :-[
Last night, around 8:00pm I started being hit pretty hard with my "background noise" as I call it...shadow boxing around Kip 3 really hard....
At 4:00am I woke with by far the worst headach I have had in years....I was dieing...this is the closest I have come to just saying "fuck it, I give up" :-[
Had I not woken up finding three *beautiful* Indoneasian women with me in my Kost along with the headach (LONG story..but not really what you think...I was a good boy... [smiley=blush.gif]) I may have just ended it all then and there....
Even now, I am still shadowing pretty hard
smiley=frown.gif]
But...After that killer passed (can you imagine what I looked like, one of my friends rolls over, sees me at four in the morning pacing, chain smoking and literally banging my head aganst the wall...and she says to me in Indoneasian/English (at least I *think* this is what she said) "Whats wrong Mr. Jac..You no Sleep.") I was able to get an hour or so of sleep before having to get up. clear out the visitors and go to work....and woke without any pain...the shadowing just started about an hour or so ago (maybe two hours after being in the office).
Sooo...long story short...I did not jump off the building...but also may have been a bit quick on the results...seems the beast has found a back door through this new medication...but all in all, I think I am somewhat better off than I was before...at least there are times now during the day that I just don't hurt...
I guess that, in it's own rights, is some success.....shit..just having a day or so with no pain I should concider a blessing...
The real bummer is I guess I kinda got my hopes up more than I should have...thinking that maybe this was it...
I just don't know if I can take another one like last night thought :(
Sorry for the bad news....
But...being one to always seek the silver lining...the night did have it's good side :)
Peace to all....
ExPat_Jac
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lionsound
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Re: Life again!!!!!!!!!!!!!!!!!!!!!!
« Reply #14 on: Sep 8th, 2004, 11:17pm » |
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It's okay Jac,
we can take the good with the bad and still completely appreciate and understand every minute of both.
More PF vibes crossing oceans to you.
Be well,
-lionsound
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Gator
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Re: Life again!!!!!!!!!!!!!!!!!!!!!!
« Reply #15 on: Sep 8th, 2004, 11:30pm » |
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Just when you think you got it licked, it rips your tongue out and shows it to you. Sorry about the quick rebound of the beast. I could feel the giddy excitement in your first post and the despair in this last one. Maybe once you get the dosage figured out, you can at least be pain free between hits. Better than where you were.
Prayers and vibes coming your way.
Gator
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vig
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Re: Life again!!!!!!!!!!!!!!!!!!!!!!
« Reply #16 on: Sep 9th, 2004, 12:16am » |
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It's a rocky road but keep on it.
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never, Never, NEVER quit. -Winston Churchill
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ExPat_jac
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Re: Life again!!!!!!!!!!!!!!!!!!!!!!
« Reply #17 on: Sep 9th, 2004, 1:41am » |
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Yeah...I guess it was just a bit of the downer of thinking I had him beat
Should have figured he'd fight and find a way to slip past the new guards...he's pretty good at that....
I'll just keep plugging along...enjoy the pain free times as I get them (hey...at least I got to see what it was like not to hurt! Thats pretty cool...I'd almost forgotten how it felt!)
Thanks guys....I'll keep you informed (or bored by it....)
Peace....
ExPat_Jac
I'm brused..I'm going home...too much is happening around this place anyway...I'm sure by now you've sen the news and know about the recent bombing....not a cool place for a white guy to be walking around for the next few days
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Superpain
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Re: Life again!!!!!!!!!!!!!!!!!!!!!!
« Reply #18 on: Sep 9th, 2004, 5:37am » |
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Congrats, thats good to hear!
Did you start all those meds at once? Is it easy to tell that it's the neurotonin or could it be one of the others, or the specific combo?
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Chris
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Giovanni
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Re: Life again!!!!!!!!!!!!!!!!!!!!!!
« Reply #19 on: Sep 9th, 2004, 8:45am » |
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I would recommend mushrooms to you if it were not for the capitol offense where you live now. Is there any chance you can move to another location/country for your job? One more suitable as far as climate and political situation, medical facilities.
Best of luck to you,
John
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Flanzinee
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Re: Life again!!!!!!!!!!!!!!!!!!!!!!
« Reply #20 on: Sep 9th, 2004, 9:11am » |
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I have been put on DHE 45 injections. It has slowed down the frequncies of the headaches. However I am also on Prednisone, Calan, Imatrex, Migernal. I have the shadow 24\7 but the pain only comes every two days any help.
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Giovanni
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Re: Life again!!!!!!!!!!!!!!!!!!!!!!
« Reply #21 on: Sep 9th, 2004, 9:39am » |
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Hey Flanzinee,
Gee you're taking a lot meds right now. For best results with this post, start a new topic, introduce yourself, maybe a brief history and your responses will be much better than posting under this thread.
John
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Ronny
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Re: Life again!!!!!!!!!!!!!!!!!!!!!!
« Reply #22 on: Sep 9th, 2004, 4:48pm » |
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Hi Jac,
I'm really glad you finally got some relief, to bad it didnt last but there is hope, if you beat him once, you can do it again!
I've heared about the bomb on the news and i thought immediately of you. (i wasn't sure if it was you or asia)
I also love to read your posts at joeuser.com, you have a funny way of writing.
To Asia: "Thanks for helping out a friend"
Keep it up.
Ronny.
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Count your rainbows, not your thunderstorms.
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ExPat_jac
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Re: Life again!!!!!!!!!!!!!!!!!!!!!!
« Reply #23 on: Sep 9th, 2004, 10:21pm » |
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on Sep 9th, 2004, 8:45am, Giovanni wrote:| I would recommend mushrooms to you if it were not for the capitol offense where you live now. |
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Yeah 
But then again, I'm in a country that even pot with get me a life sentence!
Of course being a rather...ummm...counter culter sort of guy, and having indulged in mushrooms and past experiences other things close, I would agree with you...
hahaha but then I'd be way to tempted to take my medicien more than I should
It's my Birthday tomorrow...and I'm hoping for a PFD!
So far this morning things are holding out pretty good!
I'm keeping my fingers crossed...and readjusting my expectations!
Thanks...
ExPat_Jac
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ExPat_jac
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Re: Life again!!!!!!!!!!!!!!!!!!!!!!
« Reply #24 on: Sep 9th, 2004, 10:44pm » |
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on Sep 9th, 2004, 4:48pm, Ronny wrote:I also love to read your posts at joeuser.com, you have a funny way of writing.
To Asia: "Thanks for helping out a friend"
Keep it up.
Ronny. |
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Yes..Ex_Pat_Asia has been a life saver...it helps knowing both another CH suffer and one that knows of the problems I deal with in this part of the world...plus one as nice as Ex_Pat_Asia has proven to be....
Thanks for the kind words re. JoeUser
I try hard to update it when I can, but adventures (and headaches) seem to keep me more busy than I could imagine....the good part of life here...and spending most of your time never really knowing what is happening around you is that life becomes one big adventure....
Again, thanks for the kind words....here's hoping for PFDAN's for everyone!
ExPat_Jac
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