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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Hi......almost new
        
(Message started by: Changeling on Dec 17^th, 2005, 9:08am)

Title: Hi......almost new
Post by Changeling on Dec 17^th, 2005, 9:08am

I am not quite a newbie, i have been registered here under another name, but it was a name i no longer wish to use.

I didn't post much before, i'm an OUCH-UK member and mostly posted there, but i thought it was time i had a look here too, it seems to be a friendly and helpful site, and being larger has more experience to draw on, also to tell th truth there is a lot of fighting on the uk site atm, and i want to keep out of it if i can, im not that good at confrontation........this doesn't mean i'm abandoning th uk site, i have good friends there, many of whom come here too, hi Lelimey :D....i just thought it was time i broadened my horizons.

I'm a 53 yr old man who acts 1/4 his age :-[, ive had episodic CH for 12 yrs, adn it has just turned chronic :( >:(.....so i will be looking for advice about how to cope with that, but now i just want to say hi (again ;;D) adn hope you will be happy to have me here, i'm sure i'll be happy to be here :) :) :),

tony

Title: Re: Hi......almost new
Post by LeLimey on Dec 17^th, 2005, 9:41am

You don't act a 1/4 of your age.. not even your shoe size :P Now how long have I been telling you to get yourself over here huh? Glad you finally listened! This is a terrific place with lovely lovely people and I know you'll really enjoy it. Just wait until you see all the reading you have to do now! LOL
see you soon I hope
Helen

Title: Re: Hi......almost new
Post by Jasmyn on Dec 17^th, 2005, 10:09am

Hi Tony.

This the best place in the world to be for a ClusterHead!

Welcome home and we won't hold your age against you ;)

Jas

Title: Re: Hi......almost new
Post by Changeling on Dec 17^th, 2005, 11:21am

thxx for your replies and yes my shoe size IS 7 1/2 so it's time i threw a tantrum now :P but i dont seem to have the energy today :(...........but i feel welcome already ;;D

txxx

edited for typos i have to do that a lot :-[

Title: Re: Hi......almost new
Post by Beastfodder on Dec 19^th, 2005, 6:50am

Changeling

Fighting at OUCH UK? - surely not.

Confess that up till now I've bypassed OUCH UK but have seen a couple of rants here about them. They were great helping me get O2 this year and over the phone too.

However (and delighted to see the LSA seeds posting on the site) it was the lack of fight to at least promote clusterbusters that I worry about most.

For me it's a true godsend - aborted clusters and effective pain relief. I believe if you've got CH you need at least to know of this option - and how many chronic and episodic sufferers lives it has changed.

Ought to do something about this silly name I use too - coz I am simply no longer Beastfodder.

Title: Re: Hi......almost new
Post by Changeling on Dec 19^th, 2005, 8:40am

Hi Beastfodder, ,glad u are no longer beast fodder, it's still chewing on me a bit but one way or another i have to sort it.

It is a shame that ouch-uk is so quarrelsome atm, they have been a help to me, getting my O2 sorted amongst other things, but th fighting over clustermasx adn alternative treatments ( though it IS possible now to talk about LSA at least) was really getting me down,,,,,,,,i have no intention of slagging off ppl there while i am here,many of them are good ppl and ther's too much of thtat already, and while i believe that some of them are a bit too stuffy about some things, i think their hearts are in th right place, just misguided.

I am certainly aware of some of the alternatives, and as i am told that i cant increase my verapamil dose,bad for my heart, adnt th next treatment iwas offered is lithium about which i have some doubts, i think it very likely that i shall try one or more of them before long, i already have some LSA seeds, but havent used them yet.

tony

Title: Re: Hi......almost new
Post by mrs mac on Dec 19^th, 2005, 9:11am

hi tony, good to see you over here!!!! ;)

hope you are well

mrs mac xxxxxxxxxxx

Title: Re: Hi......almost new
Post by Beastfodder on Dec 19^th, 2005, 9:18am

Changeling - couldn't agree more with your prognosis of OUCH UK.

Some really good helpful people who do care and yet they're always getting in the firing line - the clustermasx stuff was just plain silly of them.

I was even told that Prof Goadsby backs clusterbusters - tho' it can never be on record with things as they are. What more do you need than the growing number of people who say it's absolutely brilliant and works for me for it at least to be taken seriously?

I've seen and read enough to be a very enthusiatic backer and it works really well for me. There's the website and an discussion group on Yahoo both with loads of information.

Further down the line you'll get every support - but it's at your disposal now whether or not you have a shot at a painfree Christmasn (you've got the seeds?).

If it works it could just be the best Xmas present you ever got for yourself (for life - not just for Xmas!!). Feel free to give me an email or shout if it'd help.

All the best

Andrew

Title: Re: Hi......almost new
Post by Beastfodder on Dec 19^th, 2005, 9:28am

Tony - one last thought (I forgot) have a look at the side effects of Lithium and its long term use.

It won't be good reading, neither will reading up any of the prescription alternatives. It's nasty chemicals we get given (O2 excepted) - I've been on carbazemine (Sp?) and Pizotifen in the past, both had unpleasant side effects.

All the best

Andrew

Title: Re: Hi......almost new
Post by Changeling on Dec 20^th, 2005, 2:07pm

Hi thxx again for all your replies, i feel quite at home already :)....i havent finally decided about treatments, but as i already said in th Treatments forum, i am not v happy about lithium, i have some LSA seeds, i think i WILL try them for xmas ;;D,

tony

Title: Re: Hi......almost new
Post by cazman on Dec 20^th, 2005, 3:18pm

welcome i like the name lol that was the name of my second band when i was 19.
grab a chair sit down have some coffee and get to know us we care and we are always there.

Title: Re: Hi......almost new
Post by Changeling on Dec 20^th, 2005, 7:21pm

on 12/20/05 at 15:18:43, cazman wrote:

welcome i like the name lol that was the name of my second band when i was 19.
grab a chair sit down have some coffee and get to know us we care and we are always there.

Hi Cazman glad you like the name, funnily enough it's what my mum said i was when she was pissed off with me, but later i heard th Doors song and decided to take th name for my own.What was the band like? I'm a musician too, play electric guitar (original '61 Strat) amongst other things. 8)

Thxx for both th caring and th virtual cofee, i'll be staying around i think, until they find a cure for CH anyway ;;D :D

tony

Title: Re: Hi......almost new
Post by cazman on Dec 20^th, 2005, 8:23pm

it was an all rock band im still doing it today im a vocalist i was recently in studio working on some original music of my own i wrote a song about ch called the beast inside ive put it aside for the moment to finish some other projects and keep a promise to a kid i met in new orleans. ill get back to it after the first of the years thou. im glad you have found this place my friend , the people here have litterally saved my life , im pf right now but i feel a great debt to this place and i come here in pain or not, hang in there buddy and be strong, music is a great source of strenght.

Title: Re: Hi......almost new
Post by MJ on Dec 22^nd, 2005, 1:24am

Welcome Tony.

Title: Re: Hi......almost new
Post by Ghost on Dec 22^nd, 2005, 3:24pm

Like you just recently went chronic and have been getting good advise here thank god for people that care enough to help, to many to name but at or near the top being jonny, Helen, Nani(Mom), Maria(Langa,Langaroo, lasanga) ;;D Frank, Eric Eric, ;) Exploding, Jaz oh heck everyone especially all the CHenz(Cluster Henz), Sooo much help and always seems to have someone here hanging out waiting to help, talk, whatever. I even hope I can help too and will try but mostly here as comic relief.... [smiley=laugh.gif] ;;D ;) ;;D