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(Message started by: chris_uk on Dec 18th, 2003, 5:39pm)

Title: Hello and general advice sought
Post by chris_uk on Dec 18th, 2003, 5:39pm
Hi everyone,

This being my first post may i try and say in words what a complete relief and comfort it is to know that i am not alone with these damned cluster headaches!

I visited my doctor's surgery today after yet again having a week of taking paracetomol and ibuprofen for these severe and amazingly rapid headaches - here one minute, gone the next. I have distant memories of my Mom putting me in a dark bedroom, not eating cheese chocolate or orange (at all), and basically being diagnosed throughout my childhood as a migraine sufferor. More recently i was prescribed sanomigran(?).

But today all i can say is that i feel overwhelmingly that i have 'seen the light' or that it has all suddenly made sense. Within a few seconds of me describing the same old symptoms which i seem to do have been doing each year at the doctors when the pain got so hard to overcome, he said 'cluster headaches' . And for the 6 hours since then, i have today been what i can only describe as a rollercoaster of discovery. I went from vague memories of always suffering migraines to complete and utter 100% recognition of the real culprit - CH. And to top it off, i find this amazing site and all of you, that have contributed to this board.

So, a big HI and it genuinly is really good to meet you all.

To the advice side of my post, i have for the last 2 hours been reading this board, lots about treatments from this and other sites, and generally clueing myself up. Today, the GP prescribed Ergotamine suppositries 1 a day for 6 days then nothing on the 7th - during a CH period.

Whilst i realise everyone has different treatment stories, would this generally be a good start? I'm not keen on the suppositries side of it...but i'll do it if i have do....anything is better than CH.

I've printed some docs off and at the moment i think i might send it to him to see if he might re-think his prescription after reading more about CH.

Thanks for being here.....

And now i know the demon is there

I intend to tame the little beast!


Title: Re: Hello and general advice sought
Post by thomas on Dec 18th, 2003, 5:42pm
Welcome aboard - see if you can get some O2 also.

Title: Re: Hello and general advice sought
Post by hootchdom on Dec 18th, 2003, 5:49pm
Welcome Chris,

Your on the right tract. Now you know what you have. You have a wealth of info at your finger tips. Start loading up.

We are here if you need us and now you are one of us.

Pain free vibes,


Title: Re: Hello and general advice sought
Post by chris_uk on Dec 18th, 2003, 6:05pm
hi thomas and hootchdom....good to meet u!


Title: Re: Hello and general advice sought
Post by BlueMeanie on Dec 18th, 2003, 6:08pm

The support here may not stop your CH, but it will definitely make you feel better emotionally when the KIP 10's hit. There are no doctors. Just good advise as to what works and what doesn't. Everyone has different approaches to fight off the Beast.

Title: Re: Hello and general advice sought
Post by Bob_Johnson on Dec 18th, 2003, 6:14pm
May I suggest you go to the archives (left side of this page), go to 11/01/01, and look for "cluster resources--#16). While a bit out of date, this message will give you some leads on information to help you. One of the best web sites is on your side of the Atlantic.

Title: Re: Hello and general advice sought
Post by pubgirl on Dec 18th, 2003, 6:33pm
Hello Chris

To echo what Bob says, can I suggest you log onto OUCH UK as well. (

There is a wealth of information, advice and kind people there with an indepth knowledge of how things work in the UK with the NHS system, what drugs/treatments are available and how to get them. We have 02 loan schemes and regular newsletters and meetings to update sufferers on the latest developments from one of the best CH clinics in the world at the London Institute of Neurology at Queen's Square.

On the links on the usual left hand side of the message board there is also an excellent article by one of the World's leading experts in the condition, Professor Peter Goadsby which will tell you most of what you need to know about the condition and its treatment (ergotamine is there but is not usually recommended as a first line of treatment) There is also a great "Laymans article" by a sufferer who has demystified some of the jargon and technical stuff.

All in all, though it is quieter there than here, the advice is as sound and has the added bonus of being specific to the UK.

Hope to see you there


Title: Re: Hello and general advice sought
Post by Piglett1969 on Dec 20th, 2003, 11:53pm

Welcome Chris!  Isn't it such an enormous relief to finally figure out that you have something REAL, and that you're not just crazy?!  I felt exactly the same way when I was finally officially diagnosed.  On one hand, I have to say congrats!  But on the other hand, by now you already know that CH (or The Beast, or The Demon, or insert your own name here) is a very formidable foe.  It's tough, vicious, nasty, and just downright horrible.  It's a hard fight, but not an impossible one.

I've gained a huge amount of knowledge here.  Ask lots of may even help to research things here to ask your doctor.  It's even great to bounce ideas off of people who understand exactly what you're experiencing.  Good luck, and welcome!

Title: Re: Hello and general advice sought
Post by 5-string on Dec 22nd, 2003, 7:38pm
Welcome and howdy Chris,
The info and support here is unmeasurable.
Get comfortable and read as much as you can stand here.
 We all know what you're going through here. you're not alone.
 take it easy,
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