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Topic: Help in the U.K (Read 353 times) |
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sadsue
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I sobbed with joy when I found ythis web-site!
  
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Help in the U.K
« on: Sep 9th, 2003, 11:02am » |
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Can anyone help me to locate a clinic/specialist in England? I live in the midlands but would be so happy to travel! G.Ps here seem so uninformed on the condition of CH assuming ,I think , that it's migraine( a form of) to my mind, as a migraine sufferer too it's very different. I thing the same tho' apparantly they are both more common to individuals with high intellegence!!!
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'THY SOUL SHALL FIND ITSELF ALONE
'MID DARK THOUGHTS OF THE GREY TOMB-STONE-
NOT ONE, OF ALL THE CROWD, TO PRY
INTO THINE HOUR OF SECRECY:'
edgar allen poe 1844( CLUSTERHEAD.)
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Cooked Brain
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a.k.a. Max Payne, YOUCH this hurts...
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Re: Help in the U.K
« Reply #1 on: Sep 9th, 2003, 1:13pm » |
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hi there sue,
have you checked the ouch_uk site?
pfd
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"We can NOT solve our problems with the same kind of thinking that got us IN to the problem in the first place" Albert Einstein
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Charlie
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Re: Help in the U.K
« Reply #2 on: Sep 9th, 2003, 5:08pm » |
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Here is Simon's OUCH UK site. It's very focused and very good:
http://www.clusterheadaches.org.uk/
Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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daveengland
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i'm not insane,just in PAIN !!!
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Re: Help in the U.K
« Reply #3 on: Sep 10th, 2003, 2:56pm » |
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hi sue,
up until a month ago i was living in oxford.seeing pain relief unit at the churchill there.clusterheadache hadn't been diagnosed,they dismissed it saying i didn't have it for two reasons a)it doesn't happen every day b)i would not be able to work if i had clusterheadache.
after visiting this and OUCH-UK site,i went to my GP,who was prepared to try me on imigran and o2,both of which worked.i am awaiting a neuro appointmrnt,and have recently moved to suffolk.my previous doc gave me a copy of my med records so i have them handy.
so far i've found that with a copy of my records i've been able to get as much meds as i need,but (being a chronic)it puzzles me that the docs i've talked to who claim some knowledge of CH,don't know/understand about chronic
hope i've been some help
wishing you PFDAN's
dave
he's back big time and he's giving me a kicking  
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sadsue
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I sobbed with joy when I found ythis web-site!
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Re: Help in the U.K
« Reply #4 on: Sep 10th, 2003, 3:54pm » |
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Hi, Dave, I can't believe you got 02 from your g.p. I went to see mine on Monday cos' my CH is beginning a return bout . (I've been fairly pf for several years thanks to beta-blockers) However they are coming back and I'm scared!. My doc practically laughed me out of the surgery. '02 is for respiratory disease ', he said..'not for headache'I felt like belting him! Im going back on Monday to demand visit to neuro and pain clinic, can't give up in case demon is planning to come to stay, Sue.
Thanks anyway, didn't know there was an O.U.C.H U.K,
will look it up, Sadsue.
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'THY SOUL SHALL FIND ITSELF ALONE
'MID DARK THOUGHTS OF THE GREY TOMB-STONE-
NOT ONE, OF ALL THE CROWD, TO PRY
INTO THINE HOUR OF SECRECY:'
edgar allen poe 1844( CLUSTERHEAD.)
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Cooked Brain
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a.k.a. Max Payne, YOUCH this hurts...
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Re: Help in the U.K
« Reply #5 on: Sep 10th, 2003, 4:32pm » |
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DAVE!!!
 ???
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"We can NOT solve our problems with the same kind of thinking that got us IN to the problem in the first place" Albert Einstein
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Ueli
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Sue,
Your GP's lack of knowledge about CH is alarming. 
Print out the article Correct management of cluster headaches by Prof Peter Goadsby and Dr Manjit Matharu (Institute of Neurology, Queen Square, London), the leading British researchers in CH. Then highlight the part about oxygen (and others that you think important) with a marker and slam it on the desk of your ignorant GP.
Good luck
Ueli
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PeteJ3000
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If you can get O2 try it. And give up red wine
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Re: Help in the U.K
« Reply #7 on: Sep 24th, 2003, 6:41pm » |
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Hi Sue, I am in Chichester, South England and I am lucky in being blessed with a very knowlegeable consultant neurolgist in my area. I wont give out his name publically on this site but if you message me I can let you know how to contact him. I have seen Him a couple of times and when he found out that I scuba dive he immediately said to go on Oxygen (O2) as I can get hold of it without a presciption from my local dive shop. I have posted a message about this elsewhere on this message board. (just copy the address below into your browser window to go there directly
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action= display;num=1063976943
I must try the UK site talked about in another message above.
Good luck in keepingthe pain at bay.
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Prense
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Re: Help in the U.K
« Reply #8 on: Sep 24th, 2003, 8:27pm » |
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on Sep 24th, 2003, 6:41pm, PeteJ3000 wrote:| Hi Sue, I am in Chichester, South England and I am lucky in being blessed with a very knowlegeable consultant neurolgist in my area. I wont give out his name publically on this site but if you message me I can let you know how to contact him. |
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What harm would there be in publicly naming him? Seems to me that others in your neck o' the woods could benefit from that info as well.
on Sep 24th, 2003, 6:41pm, PeteJ3000 wrote:| I have seen Him a couple of times and when he found out that I scuba dive he immediately said to go on Oxygen (O2) as I can get hold of it without a presciption from my local dive shop. |
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Is this the same as O2 from a medical supply company? If medical O2 is prescription only... ~boggled~ Divers breathe this stuff for a lot longer than 15 minutes, yet we are restricted to 15 minutes... Anyone care to clarify this?
Nothing against what you are saying Pete...I am just curious.
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Prense
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Re: Help in the U.K
« Reply #9 on: Sep 24th, 2003, 8:55pm » |
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Ok, I found the answer to my question about scuba tanks...
Ordinary air is comprised of:
21% oxygen, 78% nitrogen, 1% other
Air in a scuba tank is comprised of:
21% oxygen, 78% nitrogen, 1% other
This info is from: http://www.mtsinai.org/pulmonary/books/scuba/quiz.htm
I cannot vouch for the information from this site, but it seems accurate to me.
Based on that info, you are doing nothing more than breathing dry compressed "normal air." If this is true then this will have no effect on CH. I wish it were that easy...I am STILL waiting on my O2!
If you want O2 without a script...get welder's O2.
Oh well...
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