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Scott D
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cluster headache in Australia
« on: Sep 29th, 2003, 8:36am »
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Hello,
 
Today I discovered clusterheadaches.com.  and I am delighted.  I  have been getting cluster headaches for 10 years without proper diagnosis.  In the first year or second year I even had a CT scan at my doctor's suggestion.  The scan showed up normal but my annual bout of pain remained.  
 
I spent an hour looking at the website thinking, "wow, this is exactly what I've been trying to explain to people for ages"....and..."That's it!!!"  
 
The last couple of weeks the headaches have returned including a mind bender the other night.  (it's been 18months since the last episode.)  I had huge amounts of pain killers without effect before my partner drove me to the emergency department.  For me it's always been left temple area, runny left nostril and bloodshot left eye.  
 
I have a question.  How do you know when to stop taking a preventative like Cafergot?  
 
Thanks from Australia
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BarbaraD
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Re: cluster headache in Australia
« Reply #1 on: Sep 29th, 2003, 9:53am »
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Good question and welcome to Clusterville
 
I usually don't take cafagot until I get to about a 3 or 4 on the Kip Scale, so it's not a problem to stop when the HAs leave (if they do FINALLY!!!!)  
 
Sorry you're having a rough go of it...,but stick around here. We're here to offer support. Welcome aboard mate.
 
Hugs  BD
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Re: cluster headache in Australia
« Reply #2 on: Sep 29th, 2003, 12:23pm »
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Smiley  G'day Mate!
 
I seriously don't think Cafergot is a preventative; it is more of an obortive.  Check out this site:
 
www.rxlist.com
 
You may need to review the usage with you doc.
-Smurf
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Re: cluster headache in Australia
« Reply #3 on: Sep 29th, 2003, 1:43pm »
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Welcome Scott. If it's cluster headaches that you have ... then you've found your new home on the net. Although I can't help you with your question regarding Cafergot, i'm sure that there are others who can. Start reading and asking questions...i'm sure you'll find the answers to all your questions (err most of them).
Best wishes ...  
~ Unsolved Equation ~
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Scott D
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Re: cluster headache in Australia
« Reply #4 on: Sep 29th, 2003, 6:55pm »
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Thanks for the help.  It's 10.14am down here and have woken up this morning feeling fine.
 
Checked out RX List too.  Thank you.
 
Scott.
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Charlie
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Re: cluster headache in Australia
« Reply #5 on: Sep 29th, 2003, 7:12pm »
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Welcome and you have found a place where you don't have to expalin this horror. I used Cafergot about 1972 as a preventative. Useless for me.  Not sure if I used it right though.  
 
Below are two, I hope helpful, links:  
 
The first is to a description of this disorder that does a wonderful job explaining to families, friends and employers what cluster headaches are and that they have little to do with what is thought of as a “headache.” The second is to a technique learned from a neurologist that works well for me and others.  
 
http://www.ouch-uk.org/ch/note_colleagues.cfm
 
http://www.netsync.net/users/charlies/
 
Charlie
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Turts
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Re: cluster headache in Australia
« Reply #6 on: Sep 30th, 2003, 6:50am »
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Gday Scottie D,
Welcome to the team.  Sorry  you had to enlist, but since ya here, read, research enjoy the banta.
 
Turts ( ya fair dinkum , true blu ozzie mate)
 
 Wink
 
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Re: cluster headache in Australia
« Reply #7 on: Sep 30th, 2003, 3:09pm »
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Scott, hi.  I see we're all over the place.  Cafergot really isn't a preventative, it's more an abortive.  It worked for me but only if I took two and then I got palpitations from all the caffeine in it.  I take imitrex injections like most folks here.  What I take for preventive measures is 960 mg verapamil.  Many here take this along with elavil or some other cocktail.  Hope you find a good neurologist to help you and one who hopefully has samples of stuff.  What works for one may not work for someone else, it seems to be about finding the right thing for your pain.  I have used Relpax and that's been effective for me as well.  Peace.  Stuey
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