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Any one from the UK? (Read 26040 times)
Pete
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Any one from the UK?
Aug 8th, 2008 at 7:48am
 
I live in London (SW8) and would be ace to get in touch with another CH freak like me! L8r!
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rose
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Re: Any one from the UK?
Reply #1 - Aug 8th, 2008 at 4:33pm
 
hi there  we live in leicester so at least we're in the same time zone.  wondered what form your ch takes and what treatment you are getting.  my daughter is the sufferer and has only recently been diagnosed. 

please feel free to contact us as any info would be gratefully received!

kind regards deborah
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Pete
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Re: Any one from the UK?
Reply #2 - Aug 8th, 2008 at 6:09pm
 
Hi Deborah
I've had this since I was 15! Seen loads of doctors, but no one ever knew what it was. I've just turned 27 and I was diagnosed at the National Hospital UCL last week. I'm starting GON injections, Verapamil and Sumatriptan when the bout starts up again, its episodic by the way. Probably autumn then spring, cos they always do. If your daughter hasn't been to the national hospital of neurology yet I thoroughly recommend it!
You must be glad you know what it is now, I certainly am. Not dreading the end of summer so much this year.

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« Last Edit: Aug 8th, 2008 at 6:13pm by Pete »  
 
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byoung111
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Re: Any one from the UK?
Reply #3 - Aug 11th, 2008 at 10:06pm
 
Hey Pete,

I'm not from the UK, but just spent three weeks there. Too bad I didn't know sooner, would have been great to meet you (loved the pubs). I've had CH since I was 18 and am now 30. Took six years to figure out what I had, and it was me who told the doctor after finding this site. Sumatriptian works, and will be starting Verapamil on my next cycle.

Brian

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Pete
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Re: Any one from the UK?
Reply #4 - Aug 12th, 2008 at 4:58am
 
Hi Brian
I was the same. Not all doctors, but some, seem to have slight delusions of grandeur. Think I really annoyed my doctor by suggesting his hayfever theory might be wrong.
Hope all goes well for you.
Give me a shout if you're this side again ever.
Pete.
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Em
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Re: Any one from the UK?
Reply #5 - Aug 26th, 2008 at 12:31pm
 
Hello!

I'm in Cardiff, South Wales, so not too far. I've suffered for 18 months, and was lucky to have a good GP and a diagnosis in 7 months (at BUPA).

Welcome aboard! It's good to have more folks from this side of the pond.

Em
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pubgirl
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Re: Any one from the UK?
Reply #6 - Aug 27th, 2008 at 10:39am
 
I'm even nearer- just outside the M25 in Bucks!

There are lots of sufferers in London- easier to find them on OUCH UK though

W the B
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Calling all Brits (and anyone else- all welcome) Join OUCH UK and help us fight CH together
 
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Pete
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Re: Any one from the UK?
Reply #7 - Aug 27th, 2008 at 10:50am
 
I'm from Bucks! Buckingham. Do you know it?
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pubgirl
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Re: Any one from the UK?
Reply #8 - Aug 27th, 2008 at 10:58am
 
Certainly do but I am over the "other side" on the Herts/Bed border side, near Tring/Leighton Buzzard- a village you probably have never heard of

There really are lots of you in London- if you post on OUCH Uk you may even have a neighbour!

W the B
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Calling all Brits (and anyone else- all welcome) Join OUCH UK and help us fight CH together
 
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Scott Lawrence
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Re: Any one from the UK?
Reply #9 - Nov 3rd, 2008 at 9:59am
 
Hey,

I'm in Mitcham, South London, (or Surrey if your a snob....)
Was diagnosed as an episodic sufferer in July after 4 years of being told I had sinusitis...
This is the longest 'bout' I've ever had, the 4 years that I was misdiagnosed were 4/5 week bouts occurring in August and January.
This current bout started end of July and is still going strong, no relief from anything other then Rizatriptan Melts (work 75% of the time) which I can only use twice a day.....no good when your having between 4 and 6 attacks a day.....

Doe's anyone use O2?
Loads of people seem to use it as an abortive yet my Neurologist has yet to offer it to me....

Any help/advise would be greatly appreciated...

Scott
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darknight
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Re: Any one from the UK?
Reply #10 - Nov 6th, 2008 at 10:42am
 
Hey English peeps!!!!

Scott i thik ur getting the best help from Helen!!!

Hello to all the others on here From the UK!

I Love this place its home from home glad some more UK peeps found it & Unlike OUCH UK you dont have to pay to write on the message board!!!
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Scott Lawrence
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Re: Any one from the UK?
Reply #11 - Nov 8th, 2008 at 3:36pm
 
The OUCH UK thing sucks.....why do they make you pay? Surely they would get more clusterheads from the UK joining up if you didn't have to pay....
I presume it was created by fellow Clusterheads? if so, surely they realise that this illness/disease/whatever causes some people (myself included) to have crap loads of time off work, hence a distinct lack of funds!!!!!
Asking for donations would have been better, I've already told the people that have asked what I want for Xmas to donate to them or another CH charity......
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“Understanding is the first step to acceptance, and only with acceptance can there be recovery.”
“I enjoy convalescence. It is the part that makes the illness worth while.”
Scott Lawrence 652942399  
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thebbz
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Re: Any one from the UK?
Reply #12 - Nov 10th, 2008 at 11:12pm
 
I hear tell they dont like certain forms of speech there as well.

clusterbusters.com Tongue
Glad your doing better Scott
the bb
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Scott Lawrence
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Re: Any one from the UK?
Reply #13 - Nov 11th, 2008 at 3:19am
 
Thanks The BB,

Things seem to be getting better, hits are down to 3 a day, using Imitrex on Night and Morning and riding through the afternoon one.
Should hopefully get the O2 from the Neuro this Thursday....
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“Understanding is the first step to acceptance, and only with acceptance can there be recovery.”
“I enjoy convalescence. It is the part that makes the illness worth while.”
Scott Lawrence 652942399  
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Dan
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Re: Any one from the UK?
Reply #14 - Nov 11th, 2008 at 6:18am
 
hi  i live in kent but i'm from Fulham originaly, only found this sight yesterday. Suffered from ch for 8 years or so now but was diagnosed a couple of years back. If u ever want to chat feel free to get in touch...all the best
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« Last Edit: Nov 11th, 2008 at 10:22am by Dan »  
 
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darknight
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Re: Any one from the UK?
Reply #15 - Nov 11th, 2008 at 8:24am
 
Hi Scott,

The Ouch Uk thing doesn't suck it means we stay here and obtain the best info possible!!! Let us know how the 02 goes scott i love my 02 tanks, my silver bullet
The BB, i think they are a bit anal there but as i say above if ur here you wont need to pay for the best info possible and there are enough UK peeps on here anyway, you can look at the message boards and they dont have the same warm feeling as here!!!!

PFD  Cheesy
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sheena.t
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Re: Any one from the UK?
Reply #16 - Dec 27th, 2008 at 4:25pm
 
Hi
I'm a bit late finding this site but i'm a computer newbie. I live in Wiltshire and have figured out that i'm chronic - both with CH and without (ha ha) Smiley
I cannot be without the O2 and sumatriptan, and my doc isn't happy about letting me try verapamil due to my other 'problems' so these are the main things I have. The main thing with the O2 is to have the flow rate at a rate that will work - at least 12 lpm It certainly cuts down the amount of injections i have.
It is amazing to find that more people than I figured have this thing and it's great to be able to talk about it to those who know what i'm feeling without judging or giving 'advice'. I only signed up about a week ago but I feel more at home here than OUCH UK which seems a bit clinical. Smiley
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Chantal
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Re: Any one from the UK?
Reply #17 - Jan 7th, 2009 at 8:44am
 
Hi, I'm from down south in Bournemouth.
I started Ch in sept last year and was diagnosed just before xmas.
Still waiting to get all my proper meds. Want O2 but doesnt seem too easy to get!!
My cycle seemed to finish before xmas but now seems to be starting up again Angry
kepp in touch.......
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darknight
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Re: Any one from the UK?
Reply #18 - Jan 7th, 2009 at 12:44pm
 
Hi Peeps,

welcome to those new UK members!!!
Im Si from Manchester joined here over a year ago been diagnosed for just over 2years suffered in total only 3years so my diagnosis was very quick.

Chantal - There are member on here who have fantastic information that will help you obtain oxygen and try other ways to find yourself a silver bullett a lady called lillimey (helen) is always helpful and knows most things for us uk sufferers, other than that u have probably had the responses from Linda, Batch Guiseppe never miss  a word they say as i find them to be fantastic members to all especially new members!!

Sheena.t - I know what you mean this is a frienly and helpful site full of many people who all some way  or another have the same condition and wnat to help ithers and share info with us all!!

Ive been on 02 since Feb 08 and have yet to need anything else, i do have the injectables but the 02 has worked every time!!


welcome once more

PFD TO ALL!!  Wink
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Chantal
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Re: Any one from the UK?
Reply #19 - Jan 9th, 2009 at 7:48am
 
Just wondering if any of you guys fancy a get together sometime in the next couple of months.
Would love to meet up with other 'headbangers ' like me!!!
maybe if you could all let me know who would be interested and then we could go from there?!
Chantal from down in Bournemouth  Grin
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Katie
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Re: Any one from the UK?
Reply #20 - Jan 9th, 2009 at 11:52am
 
Hi Chantal

I finally got diagonosed a couple of months ago.

I am in the Midlands and have a happy mix of episodic CH and [insert rude words of choice] severe migraine. [2-3 a week - goodbye week]

I try and study at Uni part time, juggle a home older children and try to live life between headaches.
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Pete
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Re: Any one from the UK?
Reply #21 - Jan 27th, 2009 at 8:19am
 
Yo
My twin brother lives in Bo'mo, so I'm down there quite a lot. Should be down this Friday/Saturday. Send me an email if you're about.
Pete (peter.howson@rpsgroup.com).
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LeLimey
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Re: Any one from the UK?
Reply #22 - Jan 27th, 2009 at 1:56pm
 
Dont' be listening to that dark knight muppet - I'm NOT nice LOL

I'm currently in the midlands but hoping to move back further south again. Happy to meet up any time any where if people want, I'll organise a meet and greet if we can agree a location??

And if I can help in anyway just say!

Helen
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Re: Any one from the UK?
Reply #23 - Jan 27th, 2009 at 2:55pm
 
hi to all UK members ( and big sis lol)

for those who are interested there is a uk helpline run by volunteers fo OUCH UK (you don't have to be a member to phone it) and can provide useful information for anyone who needs it

01646 651 979, just leave a contact no (pref landline) and a short message and one of the helpline volunteers will call you back!!!!

sandra xxx
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darknight
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Re: Any one from the UK?
Reply #24 - Jan 28th, 2009 at 7:53am
 
Hey Lelimey dont hurt my feelings by calling me a generic MUPPET at least call me fozie, kermie or animal i thought id at least earnt that much!!!!
And for all those that read my post praising Lelimey i take it back she needs to get on that broom and keep moving south!! LOL!!!


Hope Everyone is doing well and PFD's for all

Si
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