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NOLOGO
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Hi everyone
« on: Dec 8th, 2005, 6:01am »
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Smiley Hi.
   Thought i would say hello, my name is craig and i am in the U.K
  I have been a CH sufferer for a few years on and off.
  But up until now even thought they have been Damn painfull i have managed to tough it out, however i am now into my fourth week of this cycle and it is by far the worste ever.(no need to descibe the pain as you all know THAT feeling)
  i have all but given up on conventional meds as non seem to do anything.
  i will be with you guys on the look out for hints and tips.
  once again HELLO Smiley
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Beastfodder
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Re: Hi everyone
« Reply #1 on: Dec 8th, 2005, 7:53am »
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Hi Craig,
 
Welcome and sorry you're here.
 
One thing you won't be short of is advice and support.  Have you tried O2 and a good non-rebreather mask such as clustermasx?
 
Ouch UK will help you on the O2 front - with hiring regulators etc.  
 
If it works then that's a huge result in helping you not rely on pills to stop headaches.  
 
Further away from conventional meds there's the clusterbusters website - have a good read, there's a lot of success stories associated with the treatment myself included - not just in stopping the headache but drawing cluster cycles to a very welcome end.  
 
The LSA seeds such as RC and morning glory are freely available over the net and don't compromise you over the issue of legality.
 
There's your starter for ten - now get the bugger under your control!!!
 
All the best
 
Andrew
 
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MJ
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Re: Hi everyone
« Reply #2 on: Dec 8th, 2005, 9:29am »
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Hello Craig
 
Welcome, join in.
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MJ
mrs mac
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Re: Hi everyone
« Reply #3 on: Dec 8th, 2005, 10:02am »
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hi craig, glad you have found the site, but sorry that you have to be here!!
 
there are a few of us from the UK here, so relax and welcome home!!!
 
i am a supporter to hubby Andy who has this awful affliction
 
if we can help in any way, you only need to ask
 
 
sandra (aka mrs mac)
 
xxxxxxxxxxxxxx
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NOLOGO
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Re: Hi everyone
« Reply #4 on: Dec 8th, 2005, 11:16am »
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Hello again.
  Thanks for the kind words, its good
   That i dont feel alone in this and that you understand what im going through, i will be staying here Smiley
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LeLimey
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Re: Hi everyone
« Reply #5 on: Dec 8th, 2005, 12:55pm »
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Hi Craig,
Its nice to meet you, I'm glad you found us, it makes a huge difference as I'm sure you are finding out!
When you say you have given up on conventional meds are you including o2 in that? If you haven't tried it or you've tried it and it didn't work I'd really suggest trying it again with a clustermasx. Read what other people on here have to say, look especially at the difference it has made to people for whom o2 hasn't worked before! It's incredible, its med free, side effect free and I can't praise it enough. I can abort in as little as 5-7 minutes with one and I'm not out of the ordinary.
Glad to hear you're sticking around! There will be a ton of advice and help here whatever and whichever route you take to getting pain free.
Regards
Helen
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pattik
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  northcolor4  
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Re: Hi everyone
« Reply #6 on: Dec 8th, 2005, 2:05pm »
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Hi Craig, and a big welcome!
Patti
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andyiceman
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Re: Hi everyone
« Reply #7 on: Dec 8th, 2005, 7:24pm »
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Hi Craig,
 
Another UK headbanger!!
 
Keep on talking and fighting.  I've just left the worst ever pain period (and I thought it would never be any worse than it always is), but the point is I made it!  Don't know if you have good support near you, but we're all here together and when you're feeling ok 'ish - give talking a go (even by this route) - it's keeping me just on the side of sane.  I'm trying to get O2 on script - GP doesn't want to without neuro agreement - so I'll just wait to try it.
 
Good to be here and Welcome to you.
 
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mrs mac
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Re: Hi everyone
« Reply #8 on: Dec 8th, 2005, 10:27pm »
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hey andyiceman
 
pleased to meet you too!!!!
 
welcome and hope you get sorted
 
 
sandra xxxx
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LeLimey
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Re: Hi everyone
« Reply #9 on: Dec 9th, 2005, 4:02am »
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on Dec 8th, 2005, 7:24pm, andyiceman wrote:
I'm trying to get O2 on script - GP doesn't want to without neuro agreement - so I'll just wait to try it.

 
Andy lets see if we can help things along a bit for you here eh?
Go here http://gpinfo.ouchuk.org/ its a part of OUCH UK aimed specifically at Doctors so you can give your doctor the url too. Its been written by Professor Goadsby who is the patron of OUCH and is also the leading neurologist dealing with CH in the UK. In fact if your doctor looks in his BNF (British National Formulary) he will see that everything written there about CH is written by PG!
Get him to look specifically at the O2 CD Cylinder page, print it off if necessary! He should already be aware that O2 distribution is changing in the UK from 1st Feb next year so going for bigger cylinders and you having to buy a regulator is false economy however if he wants you to have bigger cylinders you CAN borrow a regulator from OUCH UK as a member, so joining there could be the best tenner you'll ever spend! (regulators aren't generally available on the NHS and cost about 160 to buy) You may be lucky, your doctor may try to get you one but most PCT's will deny the expense especially given the timescale til the new distribution kicks in (all tanks will come with regulators then)
If you need any more help come back and say, or ring the OUCH UK helpline. We will get you sorted though!
Take care
Helen
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cazman
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Re: Hi everyone
« Reply #10 on: Dec 9th, 2005, 11:21pm »
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hate to say it but welcome your in the right place we have alot to offer sorry your are hurting been there hopefully they will go away soon for you.
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