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pain3am
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Hi, guys. Thank God I've found you!!
« on: Aug 16th, 2003, 2:42am »
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Since I found your site, I think the cycle has passed??? I'm VERY wary of going to sleep, but I've been 48 hrs without an attack!!
 
Looking thru the site and reading your messages just makes me realize how little Italian doctors know!! I have been suffering two months every year for about 6 years. The last 2 attacks were so intense I thought my brain would explode!! But I don't have to tell you!!
 
Actually, although I think they're really bad they seem like a walk in the park compared to what some of you suffer. I can only immagine waht you must go thru. Some of the postings brought tears to my eyes and huge RESPECT to those that suffer and carry on normal lives.  
 
I take no medication and thought I might try the O2 route. Do I need a doctors consent/scrip.
 
One other question; do they get worse, better or same  as time goes on?  
 
Thanks, guys. Just knowing there are others out there that suffer like me in some twisted way makes me feel better!! (In the nicest possible way)At least I'm not alone out there!!
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ClusterChuck
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Re: Hi, guys. Thank God I've found you!!
« Reply #1 on: Aug 16th, 2003, 2:58am »
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Sorry you have to be here, but WELCOME ABOARD!
 
I am a newbie also, and isn't it amazing to find stories that you know EXACTLY what this person is going thru!  I thought I was about the only person suffering with this, and could not get thru to non sufferers what it is we go thru.  
 
Acouple of the stements that I hate the most from non CH'ers is: "It's only a headache ..."  or "Yeah I get bad headaches too."  To finally find a place where people KNOW what a "bad headache" really is!
 
But try the oxygen, it works for lots of people.  Make sure you get the mask, and not the nose "plugs" to administer it.  I don't know about Italy, but here in the states you need a doctor's prescription to get it usually, but some get by that by going to a welding supply and getting it from them.
 
Hope you have many PFDAN!
 
Chuck
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welcome home
« Reply #2 on: Aug 16th, 2003, 5:03am »
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have I gotta link for you!
http://www.ouchitalia.it/
The italian OUCH site. Give Ricardo a kiss fer me.
 
Clusters are extremely individualistic. There is no predicting whether yours will get better or worse.
 
Now the good news is that you have found the site that contains a repository of info to insure that you can "manage" them as best as humanly possible. With this info and a competent doctor you will survive this and maintain a fairly livable quality of life.
 
Walk in the sunshine
den
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64720087 64720087   Reespirit   Ree16Angel
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Re: Hi, guys. Thank God I've found you!!
« Reply #3 on: Aug 16th, 2003, 7:50am »
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Yes, thank God you HAVE found us... Welcome...it seems the Beast has figured out that you found us too... Try to get some sleep while you are having this little remission period.  Hopefully the attacks are gone for good...again Welcome sit down and start clicking away the information on this site is generous... And there are thousands of people that care, where else can you find that?????? ree
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Patrick_A
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Re: Hi, guys. Thank God I've found you!!
« Reply #4 on: Aug 16th, 2003, 9:41am »
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Sorry to hear of your pain, but we are all happy you have found us. My Ch's vary from cycle to cycle.  
Information is abundant here, and people are always helpful. We all have some kind of experience with probably just about anything you may have a question about, SO ALWAYS FEEL FREE TO ASK!!
 
PFDAN, Patrick
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Re: Hi, guys. Thank God I've found you!!
« Reply #5 on: Aug 16th, 2003, 9:47am »
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welcome aboard.....sorry you were lookin' glad you found us.     .............Jack
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Re: Hi, guys. Thank God I've found you!!
« Reply #6 on: Aug 16th, 2003, 11:05am »
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Welcome pain3am.
 
I've been episodic for about 12 years or so.  Usually only one cycle a year.  I've noticed no pattern as to them getting more painful or less painful over this time.
 
My last cycle was a fairly moderate one.  The year before they were bad.
 
Andy
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STABBINGPAIN
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Re: Hi, guys. Thank God I've found you!!
« Reply #7 on: Aug 16th, 2003, 11:55am »
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WELCOME ,I'M  ALSO NEW TO THIS SITE AND I'M SURE GLAD I FOUND IT. I COULDNT BELIEVE HOW MANY REALLY NICE PEOPLE  ARE OUT THERE FOR YOU WITH SUPPORT AND INFORMATION.
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Charlie
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Re: Hi, guys. Thank God I've found you!!
« Reply #8 on: Aug 16th, 2003, 12:35pm »
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Welcome to our ward. As Den said, the Italian OUCH site is a great place as well. Riccardo knows what he's doing but don't tell him.  Roll Eyes
 
We know, really know what this horror can do but if you look around you'll find things to help you cope.
 
Here are some links. The first being to Simon's letter which you can use to make friends, family and employers understand what this thing really is. This is definitely worth a look:
 
http://www.ouch-uk.org/ch/note_colleagues.cfm
 
This one is my circulatory technique that has help me and others:
 
http://www.netsync.net/users/charlies/
 
Good luck and let us know how you're doing.
 
Charlie
 
 
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pain3am
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Re: Hi, guys. Thank God I've found you!!
« Reply #9 on: Aug 17th, 2003, 2:08am »
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Thank you all for replying; it really does mean so much to me.
 
Of course, the attacks came back; 4 in the last 18 hours.
 
It seems like there is somo sadistic little bastard in my head pulling a lever. The first attack was bearable and I could see him laughing knowing I'm thinking "that wasn't so bad." Then 3 hours later he pulls the  "suicide attack" lever and I'm reducuced to a complete zombie!!
 
Thnks for all your support, it doesn't take the pain away, but at least now I'm fairly sure my head won't explode and I'll live to fight another day!! Thanks, guys
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cathy
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Re: Hi, guys. Thank God I've found you!!
« Reply #10 on: Aug 17th, 2003, 6:58am »
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Pain3am...and...Stabbin pain ....Welcome to the board.  Smiley
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I luv you guys!!!!!!!!

   
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Re: Hi, guys. Thank God I've found you!!
« Reply #11 on: Aug 17th, 2003, 8:33am »
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Hi  I'm  Woobie...
Welcome to the board.. Nice to meet you!
 
You're gonna get a ddddicted.. you're gonna get adddddicted.. neener neener neener!!!!!!    Tongue  
 
 
you know why?  cuz we are COOL!
and some of us are CUTE too!  (but we're married,,,, sorry!)   ;D
 
Hope you're doing well today!
 
tina - who is sleep deprived today - and feelin goofy!
 
LOVE YOU GUYS!
  peace - out
 
 
« Last Edit: Aug 17th, 2003, 8:33am by Woobie » IP Logged
cootie
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Re: Hi, guys. Thank God I've found you!!
« Reply #12 on: Aug 17th, 2003, 6:17pm »
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Hey pain3am.....yeah PAIN is Pain and it friggin hurts......sorry ya gott go thru all this.....you'll learn alot here and make lot of new friends. Pam that is behind on here tryin ta catch up  
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