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thebbz Ex Member	Re: hello im new ( few questions ) Reply #25 - Jan 14^th, 2009 at 2:07pm clusterbusters.com There is no normal with CH. all the best the bb
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calum CH.com Junior Offline I Love CH.com! Posts: 37 essex	Re: hello im new ( few questions ) Reply #26 - Jan 14^th, 2009 at 3:59pm i suppose, i just read some of the stories on the front page, 'it dissapeard as quick as it appeard' is this the case with everyone ?? mine dont go unless i take medication to make the pressure go,
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mrs mac CH.com Old Timer Offline I love YaBB 1G - SP1! Posts: 304 x0\|tobermory\|Scotland\|\|0\|0\| Gender:	Re: hello im new ( few questions ) Reply #27 - Jan 14^th, 2009 at 4:40pm hi calum sorry you are having it rough just now, but may i suggest you give the UK helpline a call 01646 651 979. All the volunteers are either sufferers or supporters and have a wealth of experience in answering any CH related questions good luck Sandra xx
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calum CH.com Junior Offline I Love CH.com! Posts: 37 essex	Re: hello im new ( few questions ) Reply #28 - Jan 14^th, 2009 at 5:29pm hi sandra sorry i didnt mean right now but in general i havnt had a full blown attack in a few months, all i get at the moment is mild pressure behind the eyes / ears / neck / nose & im not really the kind of person to call helplines really
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mrs mac CH.com Old Timer Offline I love YaBB 1G - SP1! Posts: 304 x0\|tobermory\|Scotland\|\|0\|0\| Gender:	Re: hello im new ( few questions ) Reply #29 - Jan 14^th, 2009 at 7:07pm it's entirely up to yourself Calum, the offer is there, but we can help you get on the "right road"
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thebbz Ex Member	Re: hello im new ( few questions ) Reply #30 - Jan 15^th, 2009 at 1:58pm Quote: it's entirely up to yourself Calum, the offer is there, but we can help you get on the "right road" So I think any road that leads to successful treatment of this malady is the right road. Even if you have to take a left. Please explain what the right road is in your opinion. all the best the bb
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mrs mac CH.com Old Timer Offline I love YaBB 1G - SP1! Posts: 304 x0\|tobermory\|Scotland\|\|0\|0\| Gender:	Re: hello im new ( few questions ) Reply #31 - Jan 16^th, 2009 at 3:36am the "right road" i would say is different for you all, but phoning our helpline may help calum to make the decisions he has to make to get him there!!!! all the best Sandra
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calum

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Re: hello im new ( few questions )
Reply #32 - Jan 18^th, 2009 at 1:19pm

hi mrs mac thanks for the support im a very stubborn wee ladd though !

can anyone link me good articles for the GP, as im going to see her tommorow & collecting info
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

- is good but is not very 'doctery' and only really talks about symtoms
im going to try and find stuff about dysfunction of the hypothalamus etc

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calum

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Re: hello im new ( few questions )
Reply #33 - Jan 18^th, 2009 at 4:16pm

In a cluster headache attack those arteries swell up up...wayyyy more than they should and that causes us pain. A vaso-constrictor is what we need. Hence oxygen, Imitrex and other vaso-constrictor drugs we take. Alcohol dialtes out arteries..as does some heart meds. Think.. narrowing the arteries during an attack as opposed to dialating them.

someone posted that in another thread, i cant find any articles on vaso constrictors, arteries etc, could anyone point me in the right direction please?

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mrs mac CH.com Old Timer Offline I love YaBB 1G - SP1! Posts: 304 x0\|tobermory\|Scotland\|\|0\|0\| Gender:	Re: hello im new ( few questions ) Reply #34 - Jan 18^th, 2009 at 4:22pm suggest you ask your gp to refer you to a neurologist who specialises in headache conditions also have a look at ouchuk.org lots of good info on the uk site too do you already use oxygen? Sandra
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calum CH.com Junior Offline I Love CH.com! Posts: 37 essex	Re: hello im new ( few questions ) Reply #35 - Jan 18^th, 2009 at 4:25pm ive already gone down that route, yeah ive printed off a page or so from that site nope thats one of the reasons im gunna see her about though !
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mrs mac CH.com Old Timer Offline I love YaBB 1G - SP1! Posts: 304 x0\|tobermory\|Scotland\|\|0\|0\| Gender:	Re: hello im new ( few questions ) Reply #36 - Jan 18^th, 2009 at 4:28pm have you printed off the Home Order Oxygen Form (HOOF) it is in the downloads section and is partially completed for CH Sufferers, all your GP has to do is fill out your details and the surgery details then FAX it off to who ever your oxygen supplier is!!! where and when did you last see the neuro? sandra
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Re: hello im new ( few questions )
Reply #37 - Jan 18^th, 2009 at 4:39pm

cheers, gunna look for it now nice one!
last time i saw him was after i got my MRI results said that there was no tumours but something to do with a spasm in my neck which caused the whole thing...apparantly & told me to stick with amitriptiline, that was late 2007 some time !
edit, download section ? on this site ??

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« Last Edit: Jan 18^th, 2009 at 4:41pm by calum »

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mrs mac CH.com Old Timer Offline I love YaBB 1G - SP1! Posts: 304 x0\|tobermory\|Scotland\|\|0\|0\| Gender:	Re: hello im new ( few questions ) Reply #38 - Jan 18^th, 2009 at 4:43pm where was the neuro that you saw!!! Was he a headache specialist, very important that whoever you see knows about CH so that you can get the correct treatment!! good luck and remember the helpline is there for you whenever you are ready to phone it!! Sandra
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Re: hello im new ( few questions )
Reply #39 - Jan 18^th, 2009 at 4:52pm

i was only diagnosed by a doctor who isnt actually my doctor late last year, and i just dissmissed it as cluster headache doesnt exactly sound like how it is does it...so i was looking into types of headaches and then started looking into it and here i am !
the neuro was based in essex as well, & nope he wasnt
do u know where abouts the HOOF form is ?

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mrs mac CH.com Old Timer Offline I love YaBB 1G - SP1! Posts: 304 x0\|tobermory\|Scotland\|\|0\|0\| Gender:	Re: hello im new ( few questions ) Reply #40 - Jan 18^th, 2009 at 4:59pm On the main website ouchuk.org then click on downloads and then click HOOF Form, download it and print it off ask your gp to refer you to neuro who specialises in headache conditions i think there may be one in Basildon a neuro centre that you could ask your gp about!! Sandra
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calum CH.com Junior Offline I Love CH.com! Posts: 37 essex	Re: hello im new ( few questions ) Reply #41 - Jan 18^th, 2009 at 5:18pm found it, ill be sure to ask her as ive still got a ton of questions, thanks alot for your help ! take it easy
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mrs mac CH.com Old Timer Offline I love YaBB 1G - SP1! Posts: 304 x0\|tobermory\|Scotland\|\|0\|0\| Gender:	Re: hello im new ( few questions ) Reply #42 - Jan 18^th, 2009 at 6:21pm no probs Calum, hope it helps!!!
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Re: hello im new ( few questions )
Reply #43 - Jan 20^th, 2009 at 3:03pm

apparantly oxygen has no place in a domestic environment...& she looked at me when i said theyre completly differnt to headaches and have no relation as if to say no theyre not...
get prescribed some new nasal spray simular to the effects of oxygen...anyone had this ?
getting lumps on my neck and the back of my head stings like hell, rather worrying

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Re: hello im new ( few questions )
Reply #44 - Jan 20^th, 2009 at 3:30pm

calum, please phone the helpline, we can help you through this, but it is much easier if we can speak to you direct!!

01646 651979

there is help for you with getting what you need.

Ask your GP to look in his/her BNF (their prescribing bible) under Cluster Headaches and they will see that the only licensed treatment is imigran injections and tha O2 is also mentioned there!!

You are not the first person to have problems with their GP with regards to getting the meds you need, but there is help out there, and honestly the helpline is manned by either sufferers or supporters who know what you are going through and can help you

Sandra

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