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Gatherings, Fundraisers and Fun >> Meetings and Gatherings >> Any one from the UK?
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Message started by Pete on Aug 8th, 2008 at 7:48am

Title: Any one from the UK?
Post by Pete on 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!

Title: Re: Any one from the UK?
Post by rose on 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

Title: Re: Any one from the UK?
Post by Pete on 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.

 

Title: Re: Any one from the UK?
Post by byoung111 on 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


Title: Re: Any one from the UK?
Post by Pete on 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.

Title: Re: Any one from the UK?
Post by Emily on 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

Title: Re: Any one from the UK?
Post by pubgirl on 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

Title: Re: Any one from the UK?
Post by Pete on Aug 27th, 2008 at 10:50am
I'm from Bucks! Buckingham. Do you know it?

Title: Re: Any one from the UK?
Post by pubgirl on 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

Title: Re: Any one from the UK?
Post by Scott Lawrence on 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

Title: Re: Any one from the UK?
Post by darknight on 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!!!

Title: Re: Any one from the UK?
Post by Scott@inpain.com.... :-) on 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......

Title: Re: Any one from the UK?
Post by thebbz on Nov 10th, 2008 at 11:12pm
I hear tell they dont like certain forms of speech there as well.

clusterbusters.com :P
Glad your doing better Scott
the bb

Title: Re: Any one from the UK?
Post by SouthLondonScott on 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....

Title: Re: Any one from the UK?
Post by Dan on 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

Title: Re: Any one from the UK?
Post by darknight on 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  :D

Title: Re: Any one from the UK?
Post by sheena.t on 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=damncomputer.gif]
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=hammer.gif]

Title: Re: Any one from the UK?
Post by Chantal on 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 >:(
kepp in touch.......

Title: Re: Any one from the UK?
Post by darknight on 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!!  ;)

Title: Re: Any one from the UK?
Post by Chantal on 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  ;D

Title: Re: Any one from the UK?
Post by Katie on 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.

Title: Re: Any one from the UK?
Post by Pete on 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).

Title: Re: Any one from the UK?
Post by LeLimey on 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

Title: Re: Any one from the UK?
Post by mrs mac on 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

Title: Re: Any one from the UK?
Post by darknight on 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

Title: Re: Any one from the UK?
Post by mrs mac on Feb 17th, 2009 at 9:13am
Andy and i will be in London on the 2nd March, if anyone fancies meeting for a drink and a chat let me know!!


Sandra xx

Title: Re: Any one from the UK?
Post by LeLimey on Feb 17th, 2009 at 9:55am
me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me me   .... can I come?! LOL  ;)

Title: Re: Any one from the UK?
Post by LeLimey on Feb 17th, 2009 at 9:55am
I promise I'll behave (just not well!)

Title: Re: Any one from the UK?
Post by mrs mac on Feb 17th, 2009 at 1:25pm
hmm don't know if we can let you  :o ;D................................................................................................................................................................................................................................................................................................................................................................................................................. oh ok then!!!!!!! :D :D ;D ;D

Title: Re: Any one from the UK?
Post by mrs mac on Feb 17th, 2009 at 2:37pm
so!!! anyone else interested?? or is it just going to be me and helen????? oh and andy lol


xxx

Title: Re: Any one from the UK?
Post by mrs mac on Feb 19th, 2009 at 7:54am
so it looks like it's just going to be Andy myself and Helen???















please someone else come too, don't leave us alone with Helen, she's mad???? :D :-/ ;) :P :P

Title: Re: Any one from the UK?
Post by mrs mac on Feb 23rd, 2009 at 6:30am
bump!!!

Title: Re: Any one from the UK?
Post by darknight on Mar 2nd, 2009 at 8:37am
sorry up North and unable to take time off to come see you hope you have a good time catching up!!!

Title: Re: Any one from the UK?
Post by RaceAce on Mar 3rd, 2009 at 12:48pm
Hi All
I am in preston, lancashire.
Been a ch for 10yrs now, diagnosed about 3yrs ago. Have been in a cycle for approx 8 weeks now ! Having to dance with the demon about twice every 24hrs usually keep tabs on the daytime visit but the 1.30am  tango is a killer ! :(


Title: Re: Any one from the UK?
Post by Steambug on Mar 14th, 2009 at 4:56am
well I was in London on 2nd March - but sadly was in the neuro ward of a big hospital!

would love to meet any fellow CH'ers in the UK, I'm currently living in the midlands (used to live in london so have friends and family there).

Title: Re: Any one from the UK?
Post by mookster on Jun 2nd, 2009 at 4:37am
hey there uk people! hey pete, i'm pete too, in london.sw2... erm, you're not me are you?? lol i've never met another clusterhead.. are there any meetings out there? anybody want to organise one? shall i organise one? lol... am i asking too many questions?

Title: Re: Any one from the UK?
Post by OllyJay on Jun 12th, 2009 at 10:21am
Hey there, just found this site yesterday. What a find. So nice to read about the pain of fellow sufferers (you know what i mean!)

I also want to meet a fellow sufferer/s, would be great to talk with others that truly understands my (our) pain, and to hear how they cope. Suffered 8 years diagnosed last september, so still learning all the terminoligy but i get seasonal attacks spring/autumn.

I live in London too NW10

Would be great to meet for a drink or something even if it is just water. lol.

OllyJay
ollyrocket@hotmail.co.uk

Title: Re: Any one from the UK?
Post by Nigel Noone on Jun 19th, 2009 at 4:36am
I live in Market Harborough, Leicestershire so would love to meet up with some locals too.

Cheers

Nige.

Title: Re: Any one from the UK?
Post by davedmk on Sep 8th, 2009 at 6:21pm
hi to all ,i live in devon 12 years of chronic headaches ,imigran injections,indomethacin,verapamil,and oxygen,three to four major headaches everyweek and a constant headache 24/7,,,,,,,,,oh the joy!!!!!!!!!!!!11

Title: Re: Any one from the UK?
Post by QnHeartMM on Sep 9th, 2009 at 12:07am
Darn we were just there in August! We did get to meet up with Andrewjw though!

Title: Re: Any one from the UK?
Post by darknight on Sep 15th, 2009 at 5:33am
Hi Peeps,

Sorry not been on for a while hope ur all ok and have met up with those that wanted.

PFD to ALL

Title: Re: Any one from the UK?
Post by davedmk on Oct 18th, 2009 at 9:55am
hi guys anyone around devon?

Title: Re: Any one from the UK?
Post by boybath on Nov 8th, 2009 at 2:41pm
There's a talk soon in start of Dec at the RUH in Bath any other peeps want to join then please contact Le Limey

Title: Re: Any one from the UK?
Post by Judicotswolds on Dec 13th, 2009 at 6:20pm
Hello
I'm Judi from Stroud.  Just realised it started 40 years ago.  2 Years ago had incredible attack taken into AAU diagnosed with transient ischaemic attack (mini stroke) kept in hospital for days.  few months later same symptoms taken nto aau again this time sent for Neuro and asked if it could be CH - light bulb went on and he said YES THAT IS WHAT IT IS - now thinks I didn't have TIA (good) but no further treatment. On Monday this week bam wanted to die by Wednesday saw ~GP Thursday amd asked for O2 after finding this site.  He told me they couldn't prescribe it on l hospitals could?  Did ring my neuro and rang to tell e I could have (I think its called Matax on here) It definitely helps no major wham but still constant shadows. Now believe GP wrong and can prescribe 02.  seeing him Thursday so insisting on going back to neuro at Glos Royal armed with the brilliant info from this wonderful site.  I would like to meet with others but as I am 62 rund a small contemporary gallery on my own maybe no time or too old for all you other Brit sufferers face to face.

Happy painfree Christmas to you all.

Judi

Title: Re: Any one from the UK?
Post by Carolyn on Jul 2nd, 2010 at 5:18pm
Hi I'm Carolyn in County Durham been a chronic sufferer for 3 and a half years now.... why is everyone down south  :-/

Title: Re: Any one from the UK?
Post by darknight on Aug 16th, 2010 at 12:45pm
Hi Carolyn,

there not all from down South lol, im from Manc and not been on for a long time, hope your well!!!

PFD to all


Title: Re: Any one from the UK?
Post by Mike NZ on Aug 16th, 2010 at 7:46pm

Carolyn wrote on Jul 2nd, 2010 at 5:18pm:
why is everyone down south  :-/


I'm originally from Yorkshire, but I now live even further south.

Title: Re: Any one from the UK?
Post by paula banyard on Aug 26th, 2010 at 6:46am
hi there, i've been a ch sufferer for the last 20yrs, currently in staffordshire but originally from kent. only diagnosed a few yrs ago after reading a small paragraph in a migraine book at the local supermarket!!!!! use imigram injections and a steroid taper, which seems to stop the cycle, but they seem to be coming more frequently, had a cycle 2/3 mths ago, but it seems the beast is beast is back agen with 2 visits this morning. docs are pretty good, i just ring, tel them the beast is back and the prescription is ready in the hour. fotunately its reared its head today as im off to visit the parents tomorrow lol, so i can go fully armed for war

thats me then, nice to see some more uk ch'ers here

wishing u all pfd's

paula

Title: Re: Any one from the UK?
Post by Dale Caffrey on Aug 28th, 2010 at 6:50pm
Hi people. I'm in Milton Keynes & have been an episodic CH sufferer for the last four years. With an extreme stroke of luck got diagnosed during my first cycle (@ 25YO) & have had them every year since around the end of summer. Had my worst ever attack three nights ago & have been scared of my bed ever since.

Nice to know I'm not alone.

Dale.

Title: Re: Any one from the UK?
Post by Leah on Sep 6th, 2010 at 1:12pm
hi im in the uk berkshire im new to this but have been having headaches for years was told by my doc this morning its ch thank god but not really lol have been given pills and told to wait 6 wks
nice to see other ppl in the uk  ;D

Title: Re: Any one from the UK?
Post by Gina2 on Sep 7th, 2010 at 4:39am
Hi

Nice to see other people from the UK in here.

I'm in West Yorkshire. :)

Title: Re: Any one from the UK?
Post by tongy7 on Sep 14th, 2010 at 5:34am
Hi my names Allen, Im originally from Manchester but I have been living in Cornwall for 17 years now. been diagnosed with SUNCT for last 5 years. I would say its great to see other people with similar issues but its not great is it!!!???

Love to all :D

Title: Re: Any one from the UK?
Post by R33_Ian on Sep 14th, 2010 at 10:28am
Hi I'm from Burton on trent in Staffordshire. Smack bang in the middle! I'm new here and only had my 1st attack 4 weeks ago and fishing for any advice possible.

Title: Re: Any one from the UK?
Post by RichS on Nov 4th, 2010 at 5:07pm
St Ives in Cambs signing in, been a dormant member here since July 2008, but its a great resource for us sorry lot

Title: Re: Any one from the UK?
Post by crosspescara on Jan 25th, 2011 at 5:49am
Hi
Bit late getting oin this thread but from Leighton Buzzard and work in Canary Wharf

Title: Re: Any one from the UK?
Post by suzieq6343 on Jan 26th, 2011 at 10:15am
Hi all
I'm even later joining the thread!
I'm in Chester... suffering for years but only diagnosed last year.
this site is a mine of great info and support...its good to know that there are others that know it's not "just a headache"
Sue :)

Title: Re: Any one from the UK?
Post by clarkson on Sep 15th, 2011 at 11:15am
hey all im jay from stratford in london ch sufferer for 3 years now any help i can offer and any help offered will be gratefully recieved please get in contact will be good for me to chat about this i am new to the site thought i was alone in this so glad that isnt the case thanx guys hope to hear from you all soon Jay x

Title: Re: Any one from the UK?
Post by Adam A on Oct 8th, 2011 at 9:43pm
Hi im Adam from Oldham Manchester.......and yes i would love to meet others that suffer with C.H as i refuse to talk about it to those that dont know ....as i keep hearing them say have you tried this or i used to get that and im like ok ok bite my tongue and move on ha....ive been suffering with C.H for about 5-6 years now but got diagnosed last year.......if anyone is arranging a meeting then  count me in .........speak soon everyone

Title: Re: Any one from the UK?
Post by emmettk90 on Jul 9th, 2012 at 1:06pm
Is it only England sufferers on here, whers my fellow Northern Ireland people

Title: Re: Any one from the UK?
Post by Ger on Aug 26th, 2012 at 4:34pm
Hi All,

Yipee, it looks like I'm the only one from North Wales, Mold to be precise.

It does seem to be a pattern of down south folks being the majority BUT I suppose that with London alone having a population greater than wales I can see why.

Title: Re: Any one from the UK?
Post by lupie on Jan 25th, 2013 at 6:06pm
I have just joined the forum.  I am into my 3rd week of continual headache, maybe 15 - 20 mins in between bouts.  I am finding this very very difficult to cope with this time round.  Have not met or talked to any fellow sufferers before.  I am having about episodes all day and night with just breaks of minutes in between. :'(

Title: Re: Any one from the UK?
Post by Guiseppi on Jan 26th, 2013 at 9:51am
Welcome to the board Lupie. Sounds like you're really getting creamed right now. Are you working with a headache specialist neuro yet? We have seen the best results from doing so. There are hundreds of headache types, some which mimic CH, and it’s important to eliminate those before arriving at a firm diagnosis. I’ve had CH for 36years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach:

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

This link will show you how to get set up with welding oxygen:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.

Follow this link  to the medications section of this board and read the post  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

It’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s healthy for you even without CH!

For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Visit this website as it has a lot of area specific information for your side of the pond:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com


Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe

Title: Re: Any one from the UK?
Post by lupie on Jan 26th, 2013 at 6:30pm
Hi Guiseppi,
Thank you for your reply. I have not seen a specialist yet,The locum GP has just referred me, so should get app in 3 months time. 
I cannot have any preventives until I see the neuro, so I am allowed 4-6 melts each 3 week period.  I am also allowed 4 injections as well and have been prescribed 1 cyclinder of O2 per week.  At the moment I have to ration when I take the melts, so just use co codamol, tramadol or any other pain meds I have.  I have used the O2 as soon as an attack starts but usually it returns as soon as I stop the O2.  I will try the caffeine drinks, and the fish oils, and hope that this cluster will be over soon.  I can REALLY understand why this is called the suicide headache, I really can.  I will look at the links too,
Thanks Rosie

Title: Re: Any one from the UK?
Post by Mike NZ on Jan 26th, 2013 at 9:50pm
Have a look at how some people extend their imitrex - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE.

And once you find out who you'll be seeing, try ringing up to ask about cancellations if you can get in at short notice. Or see if you can jump the queue by going privately, getting a reduction in your CHs months early may be worth the cash it will cost.

There is also a UK based CH organization - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE - they also have forums (a small cost to be able to post) and a phone helpline. They will be able to help you get around how the NHS does things, especially the one oxygen cylinder a week limit which I've not heard of before.

Title: Re: Any one from the UK?
Post by Guiseppi on Jan 27th, 2013 at 10:30am
I had the same problem with the attacks coming back within 10-20 minutes of stopping the oxygen. Try drinking an energy drink...I use sugar free red bull but any containing the combo of caffiene and taurine will work.....while you abort with 02. It seems to speed the abort time and pushes the come backer attack down the road several hours.

Joe

Title: Re: Any one from the UK?
Post by lupie on Jan 27th, 2013 at 5:42pm
I am hoping that this cluster is coming to an end at last, just 6 headaches today and less severe.  I actually did not wake up with pain this morning, so fingers crossed.
Thank you for all the advice, I have felt very much on a slender thread this time, teetering on the edge of complete fallout and not coping at all, so it was great to get understanding and not such a lonely time.
I thank you all so much
Rosie

Title: Re: Any one from the UK?
Post by lupie on Feb 11th, 2013 at 2:02pm
I am vry happy to say that my latest cluster is now at an end.  I have had 5 days without any pain, so peace at last.  Are there any leaflets that I can hand out, as I want to do a charity stall to raise funds and spread awareness of CH?
Thank you to all who answered my posts.  It meant the world to me

Title: Re: Any one from the UK?
Post by Radar63 on Jun 24th, 2013 at 5:35pm
Hi
Ian from Cornwall here.  Been a clusterhead for 15 years, episodic, used to be twice a year but Pete Batches D3 regimen saw off the winter attacks. Been hit recently, just found the Licorice Tincture started using it last Thursday, went PF last night, mid season, so should have 3-4 weeks left, so fingers crossed for tonight.  Please if you are using verapamil or any other standard nHS prescription take a look at batches D3 regimen.  Get yourself a 25ohd test from Birmingham and Sandwell Hospital (google it) bet there is somebody here with a real low serum level who WILL go pain free with the D3 regimen.
Ian

Title: Re: Any one from the UK?
Post by maz on Aug 9th, 2013 at 5:09pm
Hi all,
I live in Havant, about 8 miles north of Portsmouth. There is another CHer in Havant and I met her a couple of weeks ago. It was great not to have to explain everything.
I've never been offered 02 but I'm going to ask for it. Imigran (sumatriptan) tablets are good for anything up to Kip 5. After that sumatriptan injections are my life saver. And you peeps of course.
Marilyn.

Title: Re: Any one from the UK?
Post by mr anderson on Mar 20th, 2014 at 12:13am
Hi I. Adam from Manchester..  Would love to talk to those that wear the t-shirts ...

Title: Re: Any one from the UK?
Post by hell and back on Jul 18th, 2015 at 10:48am
My name is Dan and I'm from Manchester and would love to talk or meet other suffers. I hate typing as I'm crap with computers. I've never met anyone else with this and would love to get someone else's views and see how they live cope and manage...... Maybe I could learn from them

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