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   Author  Topic: NEWBIE FROM THE BIG APPLE  (Read 360 times)
EL
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NEWBIE FROM THE BIG APPLE
« on: Feb 27th, 2004, 1:07am »
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hi ya all, wow..didnt know there was that many of us around.. to tell you the truth had no idea of what clusters was till 2 weeks ago when my specialist told me..glad to at least find some where i feel understood..sorry that any of us have to go threw this horrible affiction..From what i see you guys really help support each other threw the rough patches.. i commend you all.  
   My name is Elliott and ive had clusters for about 2 years..(a couple of months last winter and started again 2 months ago) i was starting to think I had a brain tumor for christs sake..not quite but still not happy..im 27 years old ,exercise religiously, active , social and living in NY..add( with disturbing pain of the third kind) to that profile.. I was placed on verapamil at about 480 ml and ive been pain free for 2 weeks now.. lets hope it stays that was..still getting shadows from here to here and scared as hell to get another attack but doing fairly well now.. i reaqlly feel for all you chronic sufferers..i hope i do not have to go threw this forever as im sure none of you do..what do i have to look forward to in your opinions.. is it possible for these clusters to just go away on its own? do they always get worse as years progress? Undecided
 Just trying to get some input and say hello to all of you out there ,where ever you, that are suffering like I am.
           EL
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Re: NEWBIE FROM THE BIG APPLE
« Reply #1 on: Feb 27th, 2004, 5:52am »
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Undecidedsorry you had to find us but glad you did. It is the best place to be.
Wish you PFDAN
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wish you PFDAN
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Re: NEWBIE FROM THE BIG APPLE
« Reply #2 on: Feb 27th, 2004, 7:29am »
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Welcome Elliott.  Good to hear your meds are working.
 
I can't answer your question about if they go away on their own.  Sometimes it stops for some unknown reasons.  From what I see, it's a long term gig.  Twenty-eight years episodic for me.
 
I don't think the pain gets any worse with time.  Hits per day, levels of pain per hit and duration of cycle are the things that seem to vary.
 
Learn, laugh, make good friends and get tough...that's some of what you can get here.
 
Steve G
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Filbert
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Re: NEWBIE FROM THE BIG APPLE
« Reply #3 on: Feb 27th, 2004, 7:39am »
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Hi Elliot
  Welcome to the board I'm fairly new here too!In answer to your question about what the future holds for your clusters its very difficult to say. Some people go chronic [the bravest people inthe world], some can time their cycles like clockwork,others get longer remission periods as they get older.I very much hope you are in the last category!!
 
  All the best Filbert
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EL
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Re: NEWBIE FROM THE BIG APPLE
« Reply #4 on: Feb 27th, 2004, 10:23am »
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Thank you all for the welcome. Im lucky to have found this site after a small search.. Some people have gone many years without a support group or place to speak with others like themselves.. I was feeling quite alone but just knowing there are others helping each other makes me feel more confident living with this disorder..
My hopes for pain free days for all!!!!  Cool
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LAW
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Re: NEWBIE FROM THE BIG APPLE
« Reply #5 on: Feb 27th, 2004, 11:03am »
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Hi Elliott-
 
Welcome to the board.  I've only been around here for about a week but I can tell you that you will be so glad to have found this place.  My CH's returned on Monday and I have been here since just writing and venting to the only people in the world who know exactly what I am experiencing.  It is support you could on dream to have in your everyday life.  
 
I Hope that you will find as much peace of mind here as I have.
 
Laurie
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EL
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Re: NEWBIE FROM THE BIG APPLE
« Reply #6 on: Feb 27th, 2004, 11:09am »
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Thanks Laurie, I guess we are all lucky to have other people that have experience to help us threw the rough days.. Sorry to hear about The RETURN..Lets hope that the spell doesnt last long. Ill be praying for everyone that they find some cure for this as soon as can..If not lets hope they find a away to transplant our brains..haha.. Im sure Ill be a regular at this site. There is still alot to learn and questions to ask.
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ClusterChuck
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Re: NEWBIE FROM THE BIG APPLE
« Reply #7 on: Feb 27th, 2004, 12:48pm »
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on Feb 27th, 2004, 11:09am, EL wrote:
If not lets hope they find a away to transplant our brains..

 
Shit!  I don't know if I could handle a WORKING brain!  Can't say that I remember back when mine was working.  Maybe I had TOO good of a time back in the 60's!
 
Welcome aboard! And ask away!
 
Chuck
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EL
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Re: NEWBIE FROM THE BIG APPLE
« Reply #8 on: Feb 27th, 2004, 1:43pm »
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Gracias Chuck..thats a great interpretation of the"beast" you have there..  Grin
  Im starting to feel like I have a non working brain my self with these meds.. Im im not even getting high.. CRAP!
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Re: NEWBIE FROM THE BIG APPLE
« Reply #9 on: Feb 27th, 2004, 2:24pm »
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Hi EL,
Welcome to the board. Thank God (or whatever you have faith in) that your meds are working. Keep reading all you can on this board as your meds might/might not work when your next cycle starts. At least you'll have some sort of game plan to go on to the offensive rather then the defensive when these 'monsters' return. Don't ever think you're alone out there anymore as many people on this board have been to the brink and back - most many times! Again, welcome and PF to you in the future!
Graham
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So we will know them by their limping.
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Re: NEWBIE FROM THE BIG APPLE
« Reply #10 on: Feb 27th, 2004, 3:01pm »
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Welcome, but sorry you have to be here.  You have found the right place.  Lot's of good info and support.
PF days to all.
Andrea
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EL
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Re: NEWBIE FROM THE BIG APPLE
« Reply #11 on: Feb 27th, 2004, 4:41pm »
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Thanx Ronin, Im learning little by little..Lets hope I'll be as strong as you and the rest of you all if things worsen. Thanx you also Andrea.For the kind words.
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TxBasslady
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Re: NEWBIE FROM THE BIG APPLE
« Reply #12 on: Mar 1st, 2004, 1:45am »
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Hi Elliott,
 
Welcome to the board.
 
It's good to hear that you have had some PF time.  
 
The only predictable thing about the beast.....is that he's UNpredictable     Shocked
 
Hang in there.....keep in touch and let us know how you're getting along.
 
Great support here on this board.....and lots of friends to be made.
 
Good luck, sweetie
 
PF vibes,
 
Jean
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Re: NEWBIE FROM THE BIG APPLE
« Reply #13 on: Mar 2nd, 2004, 5:06pm »
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Hey El!
 
Welcome home.  As to your original question, I have been an episodic CH'r since the age of 13 (14 years) and my first cycle was 2 weeks and they were fairly easy to fight off.  Now I go sometimes up to 6 months with a cycle with only a few things to fight them off.  Some people will go 5 years without a cycle and think they are in the clear only to be hit again or then there are the strong hearted Chronics who fight this beast every day, 365 days a year.  Others like me have at least one, two month cycle every year.  Then there are others (I think Charlie) who has been pf for quite some time but still hangs around to help educate us all. So no one really know's what kind of life their ch will take on.  Just keep reading and sharing your info.
 
Take care,
 
Belle
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EL
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Re: NEWBIE FROM THE BIG APPLE
« Reply #14 on: Mar 2nd, 2004, 5:14pm »
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Thanks alot for the info and sharing.. Nice to know a little bit about yourselves and what your all going through. We are all in a unique kind of club..IS there a secret handshake I should learn???!! Grin
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Re: NEWBIE FROM THE BIG APPLE
« Reply #15 on: Mar 2nd, 2004, 6:46pm »
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on Mar 2nd, 2004, 5:14pm, EL wrote:
IS there a secret handshake I should learn???!!

 
More like a dance move, and you should already know it!   Grin
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Re: NEWBIE FROM THE BIG APPLE
« Reply #16 on: Mar 3rd, 2004, 1:21am »
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Hey there . Episodic 25th year, still trying to figure them out. Glad you have a prevent. 2 to 4 months  once or twice a year . Then again you never know , but thats just me. Lots of good information and support here!!
 My best advice is research and study the better you know the demon the better you can fight. Stay in shape. Eat right . Imitrex is hard on the pumper. As Ive gotten older it has been alot of help. Watch out for triggers!! Wink All the best  thebbz
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Re: NEWBIE FROM THE BIG APPLE
« Reply #17 on: Mar 6th, 2004, 9:47pm »
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Sir i have been here for less than a month --- in that time i have found that everyone here is concered about me and about everyone else --- I am greatfull for this site it has help me educate my wife--- correction the people on this site helped educate my wife.  
 
If you ever need anything just ask --- if we got the answer ( or at least think we got the answer) well tell ya or help in any way we can..
 
Bitching is allowed
Crying is allowed
 
Sorry that you went so long thinking it was a tumor -- and I know that scare -- i spent several nights crying in my wifes arms because of that fear.  
 
Welcome aboard ---  
 
dave Grin
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EL
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Re: NEWBIE FROM THE BIG APPLE
« Reply #18 on: Mar 7th, 2004, 3:10am »
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Thanx again all. Ive found n a short time on this site that you all are great for helping each other..Youve all helped me by helping others around you.. Keep it going... thumb
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Re: NEWBIE FROM THE BIG APPLE
« Reply #19 on: Mar 7th, 2004, 11:31pm »
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EL,
Sorry you had to find us, but you're in the right place now. Just about anything you want to know can be answered here.  
Glad to have ya.
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