Hi everyone, how are you doing?

I'm Gemma, I'm 24, and I live in the UK  :)

I just registered here after doing a search, as yesterday, after many years of faffing about with doctors and hospitals, I was diagnosed with CH.

I can't really remember when it all started, but I remember first going to my doctor about terrible, frightning headpain when I was about 16. Now, a million years later (almost!) and after being shuffled around from Ear/Nost/Throat specialist, to Neurologists, to Endocrine specialists, and being told so many times it was just a headache and to learn to live with it, I saw my GP yesterday who in about two minutes of me telling him about the pain I get, said everything pointed to CH. After so long being depressed, frustrated, scared and a heap of ither things, finally I feel like a doctor understood what I was saying!



So here I am, is there room for one more?  :D :P

Gemma

Always room for one more, welcome aboard.  Now all you have to do is get your treatment sorted .

Read everything you can, tons of really good information here. Ask questions and find what will work for you.  I use imagran injections which I only got the begining of the year they are a miracle.  Lots swear by O2 , i haven't used that , but have seen it being used and it looks like good stuff.

But push your GP for O2 and imgran, there are other things to try and I am sure that those with more information than me will be along soon to help you out

Aways room for one more headbanger. Check out OUCH UK. There are many here from your side of the pond. Welcome and see ya out there.
thebb

There is always room at the table.  Glad you found us, sorry you needed to.

Take Care

Thanks for the welcome guys, its great to meet you  :)

When I saw my GP, he told me there are a few options as far as treatment goes but its a case of finding the best one for me. To start me off, he prescribed me a nasal spray (Imigran) so I will give that go as and when. But he said I should go back to see him anytime if I'm not happy with it and I can try something else.  :)

That's good news.  

Be an active participant with your treatment.  For me, it was a slow road to discovery to find what worked, what dose and what combination.

Keep notes, I wish I would have from the begining so I could have kept everything straight.

I certainly do now.

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There is a lot of treatments out there here's the traditional.
all the best
thebb

You've been given some great advice to get you started. You have a rare disorder. What that means is it's imperative you educate yourself, then work in partnership with your doc to plan your treatment. Read EVERYTHING on this and the OUCH UK board, and be prepared to take an active role in planning your treatment.

Always room for another clusterhead around here, glad you found us, hope we can help you.

Guiseppi

Hello Gemma

Welcome from me too. Just to alert you that although the recommended treatments are the same as here, some of the names and certainly how you get them are very different in the UK (e.g. we are very lucky we have a free Home Oxygen delivery service here)

Wendy

hello and welcome.
belly up to the table and we will give you compassion,understanding,and advice, once in while a good laugh.
i hope brianJ joins us, he is in the UK as well. he and the others you have already heard from will help with the specifics related to the UK i am sure.
advice get an energy drink high in caffiene and taurine. and maybe an ice or heat pack, which ever feels better.
so here is a hug from across the pond.

Karl

Hi Gemma,

This is my first  time on line too, suffering for years much like yourself , useless doctors giving me the run around telling me bullshit ,and giving me anti depresive drugs . Mighty helpful for relaxation when you havnt got a headache.

Cheers Wayne

Gemma sorry you have been through so much, but if you read a lot of posts you will learn that just like being a Clusterhead you are not alone many people just like yourself have been bounced around, but now you have found a home. I can tell you from personal experience there is no solice like being able to express your fears, concerns, pains, questions and even idiosyncrasies with others with the knowledge that you won't be judged, but rather will be offered support and advice.  Good luck in finding your treatment but always know there is place here for you. We don't have to tell you the beast has a mind of its own, so you must be armed not only against it but also with your doctors, therefore as others have advised you must read read and read.  What works for one may not work for another.  However as MuumyMac and maybe others in the thread said O2 works for a large majority of us in aborting an attack, if administered properly.  You must know this and push your doctor to prescribe this.  You must have a non-rebreather mask (which you can obtain by looking to the left under oxygen info) and a regulator with at least 15lpm (I prefer 25lpm) which you can obtain on the internet.  I don't mean to sound pushy, but one that without proper O2 for years can speak from experience and in my case it was ignorance not the doctors. Again good luck and wishing you PF days.  Wishbone.

Wishbone

Gemma doesn't need to get anything on the Net - 02 is totally free here, not even the usual prescription charge and they deliver it to your house with any kit you need as well.

Not meaning to rub it in, but the National Health Service is occasionally good for some things, and this is one of them.

Wendy

Hey Wendy (or is it Windy), do you have to weigh in on every thread? Wishbone took time to express his thoughts to a newbie, and you post back just to correct him.

Why don't you take a break, Net Nannie? :-*

KJ wrote on Sep 5^th, 2008 at 9:56pm:

Hey Wendy (or is it Windy), do you have to weigh in on every thread? Wishbone took time to express his thoughts to a newbie, and you post back just to correct him. Why don't you take a break, Net Nannie? :-*

KJ
the polite phrase is "take a hike" >:(

Please don't hijack a new person's asking for help thread with your personal beef- she may be put off posting ever again.

It was not a post intended to "correct" anyone but to clarify. Gemma is in the UK and could spend a lot of time and a fortune buying things she doesn't need to or even things for 02 which don't work.
The advice on here is fantastic but a lot of it just doesn't apply here.

Would you prefer I posted nothing and left her thinking that it does?

There are lots of people on here who prefer NOT to join OUCH UK, so I think other Brits need to "weigh in" as you put it when they appear and ask for help and point them towards UK Info and help if they prefer to stay on this website.

If you think that is wrong then by all means say so, but I just can't see how it is

Gemma

Please ignore this silliness.
The second thing which may really help you is that we have a Helpline in the UK where you can get direct advice from a knowledgeable fellow sufferer who has been trained to help you. You can also just ring to talk.
Telephone number is 01646 651 979. There is a recorded message, leave your landline number and someone will call you back asap.
You can talk through what you have tried and they can tell you how to get the best treatments.


W

PS to KJ
I have no idea why you seem to have decided to have some kind of personal "thing" about me- giving me a negative on the first day of me posting for no reason whatever.

Can you leave your personal views about me out of other people's threads from now on and send them via PM so the MB can concentrate on the useful CH stuff?

    Yep....there's always room for one more Gemma.


 
Quote:

I saw my GP yesterday who in about two minutes of me telling him about the pain I get, said everything pointed to CH.

I love hearing things like this.  Shows you that not all Dr.s are uninformed or will try to brush you off with:

 1.  You're a woman and women don't get CH.

 2.  It's just a headache...deal with it.


Welcome to your second family Gemma.

:) Thanks for your replies, guys, I really appreciate it, and its great to meet you  :)

And thanks Wendy for putting the ouch helpline number here, I have noted it down and will keep it safe  8-) Its reassuring to know that I can chat to someone about CH like that, especially if it gets to be 'one of those days' when it gets the better of me! But also to find out more infotmation about treatment and stuff like that. My GP was great in telling me about CH, but he did say it isn't something he sees a lot of amongst his patients, and said it will be something for both him and me to learn about while we find what's best in dealing with it.  :)