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New CH.com Forum › Cluster Headache Help and Support › Getting to Know Ya › New Clusterhead- UK!

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New Clusterhead- UK! (Read 2577 times)

Clustersdontdefine

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New Clusterhead- UK!
Jul 23^rd, 2015 at 10:24am

Hi all. I just wanted to introduce myself. I am a 23 year old woman from the UK. I have been diagnosed with Cluster headaches by my neurologist I had a long stint last year and I know they are going to start again. I am so glad I have found support here before they do!
Any advice or experiences would be really helpful to read. I had never heard of these before mine started and Im amazed by others replies and stories I have already seen.

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Batch

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Re: New Clusterhead- UK!
Reply #1 - Jul 23^rd, 2015 at 10:44am

Welcome to CH.com, you've come to the right place. There's plenty of reading to do and questions to ask so don't be bashful.

A couple questions... Do you have home oxygen therapy? If not, fill out the attached HOOF and take it to your neurologist. Having oxygen therapy as an abortive can stop a head-banger CH in roughly 7 minutes if used properly and early.

Have you checked out OUCH-UK? They have run the trap lines and know how to navigate your NHS to get what you need as a CH'er.

Check your PM inbox in the upper left of this screen below the date and greeting. Just click on the words in bold saying you have 1 new message

Take care and please keep us posted...

V/R, Batch

« Last Edit: Jul 23^rd, 2015 at 10:44am by Batch »

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Clustersdontdefine

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Re: New Clusterhead- UK!
Reply #2 - Jul 23^rd, 2015 at 10:56am

Hi, thanks for your reply. I don't have oxygen yet, I was prescribed sumatriptan with the view to move to injections on the next cycle. To be honest, my consultant isn't the most sympathizing of people and seemed to just assume my bout was coming to an end, and that was that. I have had the painkillers that dissolve to the roof of the mouth but they do not act fast enough and im already vomiting and thrashing around after five minutes of even having a twinge. So they do absolutely nothing. I have also been prescribed verapamil? Is that fairly common? I have asked about switching to the injections because they act faster? I have tried to read up on as much as I can

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Batch

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Re: New Clusterhead- UK!
Reply #3 - Jul 23^rd, 2015 at 3:47pm

Sumatriptan succinate is the main stream Standards of Care abortive for CH after Oxygen therapy at 15 to 25 liters/minute with a non-rebreathing oxygen mask. Verapamil is the leading Standards of Care preventative for CH.

The following chart comes from the European Federation of Neurological Societies (EFNS). It was developed by team of internationally known neurologists recognized as experts experienced in treating patients with cluster headache and other trigeminal autonomic cephalalgias (TAC).

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The experts are Evers S, Afra J, Frese A, Goadsby PJ, Linde M, May A, Sandor PS. I've had the pleasure of meeting with doctors Arne May, Peter Sandor and Peter Goadsby to discuss the effectiveness and speed at which oxygen therapy with an oxygen demand valve aborts CH. Dr. Goadsby has been a featured speaker at two of our OUCH conferences

You can find more about this chart at the following link:

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In short, you're getting most of the right CH medications... I say most, because you still need home oxygen therapy. Download the HOOF pdf in my last post, print it out and take it to your neurologist to sign... Your NHS will cover home oxygen therapy for cluster headache. If he refuses... call the OUCH(UK) help line... It's at the following link:

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They'll explain your next steps.

Have you checked your PM inbox at the top left corner of this page?

Take care and please keep us posted.

V/R, Batch

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Clustersdontdefine CH.com Newbie Offline I Love CH.com! Posts: 3 UK Gender:	Re: New Clusterhead- UK! Reply #4 - Jul 24^th, 2015 at 6:28am Hi Batch, thanks for your reply. Hope your well.
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Bob Johnson

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Re: New Clusterhead- UK!
Reply #5 - Jul 24^th, 2015 at 11:25am

There are a few UK members who will likely respond to you.

You have an excellent support group which you should contact/join.

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=======
Verapamil is likely the most widely used preventive for Cluster.

On using sumatripan: don't wait for the attack to develop before using i; delay can reduce effectiveness to near zero.

For your infor, print the PDF file, below.

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(96 KB | 16 )

Bob Johnson

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eye eye

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Re: New Clusterhead- UK!
Reply #6 - Jan 31^st, 2016 at 4:41pm

Clustersdontdefine wrote on Jul 23^rd, 2015 at 10:24am:

hi i live in london and have had 28yrs of pain.iam in a bout at the moment.the beast has a habit of changing when it suits it.verapimil worked for me only once the first time i used them 240mg a day.but the following year i was on 920mg a day with no benefit atall.it might be worth having a allergy test done .if your ch bouts come only once a year

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maz CH.com Hall of Famer Offline I Love CH.com! Posts: 1071 Hampshire, England Gender:	Re: New Clusterhead- UK! Reply #7 - Feb 10^th, 2016 at 3:17pm Hi there, I'm in the UK too - about 6 miles north of Portsmouth. If you would like to talk, send me a PM and I'll give you my phone number. Maz.
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