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ukmark
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You understand!
« on: May 23rd, 2005, 10:24am »
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I'm just at the end of week 1 of my latest episode. 6 or 7 hits a day and for me this will last about 6 weeks. Good news is that when they're done I'll be CH free for about 2 years. I'm now 40 and have had these attacks since I was 14 and have NEVER had an accurate diagnosis until the last visit to the Dr last week. Previous diags included the usual Migraine and allergic reaction (to May and June!?)  
 
The reason for this post is to thank you for producing such a great and useful site. I've read a few other posts and admire the fortitude and resilience of all of you. Your strength, humour, support and friendship are so helpful to a newbie to the site (though not new to CH)
 
I used to take massive amounts of painkillers, now I dont cos I know they don't work. I used to think I was the only one who wanted/needed to walk around while I had an attack. I used to think I was the only person who hit their head! I used to think I was the only person who cried like a baby when it got bad.
 
If there's anyone else from my part of the world feel free to get in touch, though if you're in remission I might hate (and envy) you for a while!
 
Mark
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pattik
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Re: You understand!
« Reply #1 on: May 23rd, 2005, 10:53am »
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Welcome Mark.  Sorry you needed to find this site, but glad you're here.  There is plenty to learn here, and many members who can help you with questions.  Also, here is link to the UK site, which can also give you good resources:
http://www.clusterheadaches.org.uk/home/index.cfm?address=../home/txt_we lcome.cfm&added=Dec2001&code=AD
 
Welcome to Clusterville.   Pat
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The voyage of discovery is not about seeking new landscapes, it's about having new eyes--Marcel Proust
LeLimey
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Re: You understand!
« Reply #2 on: May 23rd, 2005, 10:56am »
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Hi Mark!!  I'm about an hour north of you in Nottingham!
I'm glad you found this site, it makes such a difference knowing you aren't alone doesn't it?
What meds have you been given? I know you are hopefully coming to the end of your cycle but lets get you ready for next time! I personally love my o2. I wouldn't be without it. It aborts a hit in 10-15 minutes for me and sometimes quicker. There is loads of info here and I can't recommend enough that you read, read read.
We have a UK site too which is brilliant. There is even a helpline there so take a look. It has terrific meds advice for the UK.. bear in mind some things valid in the US aren't available in the UK such as melatonin for instance.
 
http://www.clusterheadaches.org.uk/home/index.cfm?address=../home/txt_we lcome.cfm&added=Dec2001&code=AD
 
Thats the Brit site, The National Conference is in June (the 12th) and you might like to think about coming along and meeting up with some other ch'ers.
In the meantime, welcome! Read as much as you can and ask all the questions you want! Oh and if you live anywhere near Silverstone can I be your new bestest best friend?!!  Grin
Take care
PFDANS
Helen
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ukmark
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Re: You understand!
« Reply #3 on: May 23rd, 2005, 3:02pm »
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Pat/Helen thank you
 
Mind you Pat if you think another 5 or 6 weeks of this is coming to the end you must be a Chronic (seems like a life sentance to me!) Thanks for the other places to visit though, much appreciated.
 
Helen I'm about 10 mins from Silverstone and have done a few Trackdays there on my bike. I might even be able to snag a few tickets if your interested. You prefer bikes or cars?
 
Got to go, bet you can guess why!
 
Mark
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LeLimey
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Re: You understand!
« Reply #4 on: May 23rd, 2005, 3:28pm »
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Hello again Mark, I'm so sorry you are getting beaten up again already, it stinks. What meds are you on at the mo? Lets see if we can't get you sorted asap huh? I misunderstood earlier, I thought you were already at the end not 5-6 weeks to go.  
As to Silverstone.. I'm a car racing fan, in particular F1 (DC!), can't seem to get into bikes in the same way.
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The arsehole I'm divorcing needs to get a life and stop stalking mine

don
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Re: You understand!
« Reply #5 on: May 24th, 2005, 9:46pm »
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Damn Brits are over running the place.
 
Hey Mark you sound like an old CH veteran. What you put in here will be as valuable to others as what you get out.
 
I've got a sudden craving for fish and chips.
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Re: You understand!
« Reply #6 on: May 25th, 2005, 9:00am »
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WWW.MELDRUM.DEMON.CO.UK/migraine. At bottom of home page, look for FAQ on clusters: four sections of extensive material; strong on treatment options.
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Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH.  (2002)
   
http://www.brightok.net/~mnjday/chtherapy.pdf  
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Bob Johnson
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