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Topic: Grateful to find this site!! (Read 513 times) |
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flipflops
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Grateful to find this site!!
« on: Jan 10th, 2004, 9:52am » |
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I'm brand new to this site, but am glad to be amongst such an elite group(ha ha). I have been a cluster headache sufferer for over 15 years now. I seem to get them every 1-2 years, usually in the late fall to early winter. They usually come to visit for 4-6 weeks...and I get 2-3 per night/morning. I have them currently, and had a particular bad night and morning and...well, I'm just really worn out! Right now I'm doing the oxygen and cafergot thing; no matter what I do, they last for 45 mins. to 2 hours. Have done DHE45 shots in the past, but go to those as a last resort, cause I hate giving myself shots.
Just want to say hello and thanks for this forum...looking forward to making some new friends through having not such a wonderful thing in common. These headaches are such a LONELY thing, cause it's just you isolated with the pain. Family/friends can be sympathetic, but can in no way understand the violent hell we have to endure....or the despair we feel. Very nice to know you all are out there!!
PS...are they that uncommon in women? Doctors have indicated this to me in the past. My dad had them, but neither of my 2 brothers ever got them-just lucky me.
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Kevin_M
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Re: Grateful to find this site!!
« Reply #1 on: Jan 10th, 2004, 10:05am » |
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The women here are very uncommon, but not because they get clusters though. 
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CHmess
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Re: Grateful to find this site!!
« Reply #2 on: Jan 10th, 2004, 10:17am » |
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Welcome flip flops! And like everyone always says - we're sooooo sorry that you have to be here - but there's no better place for you!!! I'm pretty new around here but I'm already addicted to this site!
Family/friends try to understand your pain but usually end up making you feel worse because they just can't grasp it! People around here will NEVER make you feel that way! We're all here for each other and that alone is very comforting!!!!!!! So hang around and we'll send you all the PAIN FREE VIBES that you need! 
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hunterdon04
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Re: Grateful to find this site!!
« Reply #3 on: Jan 10th, 2004, 10:37am » |
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i found this site about 2 weeks ago and its been a real god-send to me....welcome and i usually get my CH in the winter as well (right around the soltice) i finally broke the bastard a few days ago and have been PF fur about 2 days...things i did this time that i've never done before?? (thanx to the advice of this forum) cold-turkey quit smokin, no alcohol, coffee, oxygen, tonnes of water, injection and nasel of trex....and goin to a tanning salon (im convinced that my trigger is the change in sunlight hours) hang in there and remember they will end....peace
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Little Deb
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Re: Grateful to find this site!!
« Reply #4 on: Jan 10th, 2004, 11:56am » |
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welcome to the board, and our "other home" of clusterville. come on in. we are happy to have you. not happy you have CH though. if you haven't already, check out www.clusterheadaches.org also. OUCH site.
little deb
raleigh, NC
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jonny
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Re: Grateful to find this site!!
« Reply #5 on: Jan 10th, 2004, 1:01pm » |
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Welcome aboard Flip chick.
Im King, thats all you have to know for now
...........................jonny
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thomas
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Re: Grateful to find this site!!
« Reply #6 on: Jan 10th, 2004, 2:38pm » |
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Welcome aboard flipflops...Sorry that you are getting hit right now......  Have you tried zomig, amerge, or axert for abortives? They might work well for you, read all of the stuff on the left. Hang in there. We are all here for you.
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Ree
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Re: Grateful to find this site!!
« Reply #7 on: Jan 11th, 2004, 7:46am » |
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on Jan 10th, 2004, 1:01pm, jonny wrote:Welcome aboard Flip chick.
Im King, thats all you have to know for now
...........................jonny |
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yes and Im the princess, LOL.............. don't mind him he used to be a frog and got kissed by a beautiful damsel and well you know the story...............
 Heeeeeeeeeeeeeeer's jonny.... Welcome~~~<3 Ree
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Woobie
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Re: Grateful to find this site!!
« Reply #8 on: Jan 11th, 2004, 9:15pm » |
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Welcome Flip!
take off yer coat and stay a while.............
tina
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Kevin_M
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Re: Grateful to find this site!!
« Reply #9 on: Jan 11th, 2004, 9:42pm » |
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Keep your flips flopping onto this site. Good info and spirits when you need it. A clusterhead from Hilton Head, we'll always try to keep you on par when you get teed off about it all. The medication education is here. Glad to have you here. Kevin M
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Charlie
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Re: Grateful to find this site!!
« Reply #10 on: Jan 11th, 2004, 9:52pm » |
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Welcome aboard. You'll find lots of good ideas for dealing with this horror. Your story sums it up rather well. These links are for a technique that helped me and for a letter which you should be able to use to help others know that this has nothing to do with what others think of as "headache."
Technique:
http://www.netsync.net/users/charlies/
Letter:
http://www.ouch-uk.org/ch/note_colleagues.cfm/
Charlie
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BruceD
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Re: Grateful to find this site!!
« Reply #11 on: Jan 11th, 2004, 10:02pm » |
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Welcome flipflops. This is one great place to be to learn about CH. There is such a tremendous group of men & women here who have tried just about anything (to battle CH, that is  ) Anyway, read as much as you can & learn, learn, learn.
Take care
BruceD
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roger-uk
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Re: Grateful to find this site!!
« Reply #12 on: Jan 12th, 2004, 12:14pm » |
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i am new to this site as well and have had cluster headaces for about 30 years, i thought i was the only one, reading the messages on this site has helped me as i now know i must be fairly normal well almost, i suffer the same as you describe i get mine in the fall every year and last for about 2 months with about 6 hits a day mainly at night, the pain is the worsed i have ever had to put up with, i thought i was a wimp, do you fing that it spoils you social life, i dont know about you but i cannot have a drink or eat chocolate, am affected by change in room tempreture or any dam thing really, do you find that its hard for friends to understand, they just think its a headace, i hope yours will stop soon the feeling when they go is fantastic, all the best roger from the uk
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ZAIRA
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Re: Grateful to find this site!!
« Reply #13 on: Jan 12th, 2004, 12:21pm » |
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Just wanted to add my welcome too. So sad because you are a CH sufferer, but pleased to welcome another unlucky to this board. Stay with us.... Zaira from Italy
P.S. WOW Ree!!! 
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Tiannia
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Re: Grateful to find this site!!
« Reply #14 on: Jan 12th, 2004, 12:27pm » |
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Welcome... This site is a wonderful thing and has helped many of us learn and understand that we are not alone. Sorry you have to join us, but glad you found us.
Dont ind Jonny, he really has a heart of gold...
Tiannia
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River_Rat
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Re: Grateful to find this site!!
« Reply #15 on: Jan 12th, 2004, 12:31pm » |
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Welcome aboard Flip, you've found the right place, just read read read, you'll find that there is a lot of things that will help you, keep us informed about how your doing.
NORM
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Big Dan
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Re: Grateful to find this site!!
« Reply #16 on: Jan 12th, 2004, 12:33pm » |
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Welcome Flop....
... Take a seat... learn, share and get well....
(And mind me... I'll mess with your head)...
-Big Dan
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TxBasslady
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Re: Grateful to find this site!!
« Reply #17 on: Jan 12th, 2004, 12:53pm » |
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Welcome to the board 
This is a great place to be for venting, support and understanding.
Lifelong friends will be made here.......CH is serious. But the laughter and humor and fun times are all a big part of it also.
This "family" will take care of you.........stay with us....let us know how you are getting along.
PF vibes,
Jean
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flipflops
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Re: Grateful to find this site!!
« Reply #18 on: Jan 12th, 2004, 5:28pm » |
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Hey....I'm back. Thanks you guys for all the messages. I am having a bad time of it this cycle - the beasts are out of control. But it helps to have this incredible group who really understands. I hope to make the get-together in Raleigh at the end of the month...hope to meet some of you there!
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suffolkguy41
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Re: Grateful to find this site!!
« Reply #19 on: Jan 13th, 2004, 6:16pm » |
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Hi I have just registered my husband to this site to find out a bit about these horrendous attacks.
He had a headache for months then all of sudden they went! He is waiting for an appointment to see neurologist. The specialist referred him in november and is currently on 80mg of propananolol twice a day.
The headaches are back again after nearly 2months of being pain free they are bad enough for him to come home early from work (which is unlike him). While we are waiting to for appointment does anyone have any suggestions of what we can do to lessen the pain?
I would be grateful for any feedback.
Angie (CH sufferers wife)
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BlueMeanie
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Re: Grateful to find this site!!
« Reply #20 on: Jan 13th, 2004, 6:38pm » |
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Hi Flips.
Glad you found us. This place is awsome for venting and/or laughing to keep your pain in check. Are you Chronic or Episodic ? Have you tried Imitrex injections ?
ps: CH's are not known to be hereditary thank goodness.
Welcome to Clusterville !!!!
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flipflops
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Re: Grateful to find this site!!
« Reply #21 on: Jan 13th, 2004, 7:32pm » |
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I go back to doctor tomorrow. Have not tried imitrex injections before...worth a try. I've been a guinea pig for just about everything else in previous years. I'm now getting Kip 8-9's during the day as well....unusual for me. Could they be rebound headaches? I feel like I'm losing my mind here. Enough is enough.
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Prense
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Re: Grateful to find this site!!
« Reply #22 on: Jan 13th, 2004, 7:44pm » |
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on Jan 13th, 2004, 7:32pm, flipflops wrote:| Could they be rebound headaches? |
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That would depend on what you are currently taking. There are many meds out there that can result in rebound HAs.
From what I have read and gathered from other folks, rebound HAs are not comparable to CH in pain intensity. Others, however, refer to rebounds as additional CH attacks. Either way, I cannot ever say that I have experienced a rebound HA from anything.
Hopefully, you are not consuming/doing anything to trigger additional attacks from what you would consider a "normal" cycle.
Be forewarned...several people here claim imitrex causes rebounds. Not the case for me though.
Best wishes for you Flip!
Chris
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BlueMeanie
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Re: Grateful to find this site!!
« Reply #23 on: Jan 13th, 2004, 7:45pm » |
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Flips,
I'm sending you VIBES in hopes that the Imitrex works for you. It is about the best method for aborting for most of us.
Good Luck tommorro.
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