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Any one from the UK? (Read 26071 times)
Gina2
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Re: Any one from the UK?
Reply #50 - Sep 7th, 2010 at 4:39am
 
Hi

Nice to see other people from the UK in here.

I'm in West Yorkshire. Smiley
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tongy7
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Re: Any one from the UK?
Reply #51 - 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 Cheesy
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R33_Ian
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Re: Any one from the UK?
Reply #52 - 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.
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RichS
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Re: Any one from the UK?
Reply #53 - 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
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crosspescara
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Re: Any one from the UK?
Reply #54 - Jan 25th, 2011 at 5:49am
 
Hi
Bit late getting oin this thread but from Leighton Buzzard and work in Canary Wharf
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37-41withrestrictions
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Re: Any one from the UK?
Reply #55 - 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 Smiley
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clarkson
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Re: Any one from the UK?
Reply #56 - 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
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adamski
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Re: Any one from the UK?
Reply #57 - 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
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emmettk90
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Re: Any one from the UK?
Reply #58 - Jul 9th, 2012 at 1:06pm
 
Is it only England sufferers on here, whers my fellow Northern Ireland people
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Ger
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Re: Any one from the UK?
Reply #59 - 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.
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lupie
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Re: Any one from the UK?
Reply #60 - 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. Cry
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« Last Edit: Jan 25th, 2013 at 6:09pm by lupie »  
 
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Guiseppi
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Re: Any one from the UK?
Reply #61 - 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 itís important to eliminate those before arriving at a firm diagnosis. Iíve had CH for 36years, they havenít killed me yet! You need an organized approach to managing them so they donít 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 CHíers 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, thatís completely pain free. Read this link as it must be used correctly or it will not work

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

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

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Imitrex nasal spray and injectables are very effective abortives. I use the injectables, theyíre 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 CHíers.

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

Itís a vitamin/mineral/fish oil supplement, all over the counter stuff, thatís providing a lot of relief for people who have tried it, itís 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:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Finally, visit our sister board for ďalternativeĒ treatment methods outside of mainstream medicine. As youíll 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 CHíer, knowledge is your best ally. Weíll help you all we can.

Joe
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lupie
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Re: Any one from the UK?
Reply #62 - 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
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Mike NZ
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Re: Any one from the UK?
Reply #63 - Jan 26th, 2013 at 9:50pm
 
Have a look at how some people extend their imitrex - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register.

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 - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register - 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.
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Guiseppi
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Re: Any one from the UK?
Reply #64 - 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
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lupie
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Re: Any one from the UK?
Reply #65 - 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
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« Last Edit: Jan 27th, 2013 at 5:43pm by lupie »  
 
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lupie
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Re: Any one from the UK?
Reply #66 - 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
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Radar63
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Re: Any one from the UK?
Reply #67 - 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
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maz
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Re: Any one from the UK?
Reply #68 - 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.
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Re: Any one from the UK?
Reply #69 - Mar 20th, 2014 at 12:13am
 
Hi I. Adam from Manchester..  Would love to talk to those that wear the t-shirts ...
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Re: Any one from the UK?
Reply #70 - 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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