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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> hello, so I am not alone!
        
(Message started by: Sisyphus on Nov 16^th, 2004, 8:45pm)

Title: hello, so I am not alone!
Post by Sisyphus on Nov 16^th, 2004, 8:45pm

Just discovered this site and am I happy. 34 years a sufferer, 32 years of doctors telling me that nothing can be done, one even said to me (as I was having an attack before her) "I don't know what you expect me to do about this". Currently in a bout, hence being awake in the early hours, and just relieved to be in contact with others who know what I am talking about. Never met anyone or spoken to anyone with cluster before. Going in to see a doctor tomorrow at 3 (have had to wait two days for an appointment) and am armed with the information off of the site. I am putting a strategy in place tomorrow and just let that doctor stand in my way!
I've done this cold since I was 14, my bouts are 6 to 8 weeks, 3 to 5 a day, an hour an installment and it comes round roughly every 14 to 20 months. Hi guys.

Title: Re: hello, so I am not alone!
Post by AussieBrian on Nov 16^th, 2004, 9:06pm

Alone you ain't. Welcome home.

Title: Re: hello, so I am not alone!
Post by Sisyphus on Nov 16^th, 2004, 9:19pm

Hi Brian, saw your reply to Rob and had to laugh. I never thought of the idea of cops, guns and cluster headaches before. That's seriously tricky! Thanks for your good wish and it does feel like I have found home. Checked out your profile and see you are up by Cairns, is that right? I have spent time in Queensland and got as far up as Laura. Have some real good Queenslander friends from Toowoomba, Brisbane and Noosa. It's just good to talk mate. It's about 2 in the morning here and I am on the night shift trying to stave off the inevitable. I discovered Sumatriptan injections two years ago and they have rather ruined me. After having spent 30 years doing my bouts with just tenacity and sweat, to discover something that stopped the pain was heaven. But now I find that psychologically I am spoilt inasmuch as I seem to have lost some of the inner strength I need to get through the bouts. The problem is that doctors here do not want to prescribe the injections as they cost too much on their drugs budget. This coupled with the fact that I have yet to meet a GP who actually knows what cluster is makes the situation a little difficult. I had one GP explain to me that cluster meant a clustering of nuerons in part of the brain!!!! I'd like to have clustered his neurons. Anyway, lovely to meet you. jack.

Title: Re: hello, so I am not alone!
Post by Mr. Happy on Nov 17^th, 2004, 1:39am

Alone? Did somebody say alone??

http://mushys.com/despair/lonliness.jpeg

Title: Re: hello, so I am not alone!
Post by pubgirl on Nov 17^th, 2004, 3:46am

Hi Jack

You definitely aren't alone, there are hundreds of OUCH UK members over here, and we regularly meet up. Sorry I didn't know you then but we had an annual meeting in London this summer which was very well attended. We also have quite a few people in the London area and meet in small groups in the pub every now and then (some of us drink to excess, some don't ;;D)
I can give you the details of the OUCH Uk site if you don't know them already.

Also, long shot here. Do you know Stephen Howe, (Ruskin Don)
If you do, can I say, he is my brother, but I'm nothing like him ;;D

Wendy

Title: Re: hello, so I am not alone!
Post by Filbert on Nov 17^th, 2004, 6:43am

Hi Jack welcome to the message board! I can only echo what others have already said there is no longer a reason to feel alone with this dreadful condition as people here understand what you're going through.
Wendy mentioned meeting up with other CHers and the first time you do it's an overwhelming experience. I'm organising a small meet in a central London pub sometime in the next few weeks and I can let you have details if you wish. Anyway all the best Filbert.

Title: Re: hello, so I am not alone!
Post by LeLimey on Nov 17^th, 2004, 6:43am

Hello, nice to meet you!
Just HAVE to say I love your handle ;;D I had an old banger once (Montego Estate) that I called Sisyphus 'cos that was who I felt like "trying" to drive it!

Title: Re: hello, so I am not alone!
Post by Sisyphus on Nov 17^th, 2004, 6:50am

Bloody hell pubgirl, of course I know Stephen Howe, or did, and we got on quite well. he was fleetingly aware of my existence and I was always as mad as a fish so there was no essential conflict! Talking to a neurologist I was told that CH people report "over average consumption of alcohol". I have to confess that the old liver has rather been abused and some of my friends claim, "Jack, he has the gene for beer consumption". Would love to link up with everyone. First time on the network yesterday, currently going through a bout so completely beer free at the moment but hoping to survive and recover in time for Yule festivities. This episode was a bugger, it began just before my birthday so my friends celebrated with a large meal for me and the advice that I should try and cheer up as they dug into the wine rack with a vengance. That really pissess me off, its one thing when they don't understand my headaches and treat them as some passing fetish on my part but its worse when they toast my birthday and tell me to cheer up and stop looking so miserable!

Title: Re: hello, so I am not alone!
Post by pubgirl on Nov 17^th, 2004, 7:04am

What a small world it really is Jack!

Stephen isn't at Ruskin any more, has just taken redundancy and is probably writing more books I can't read ;;D He could teach you a thing or two about liver abuse. :-X I'm his not so little sister, and I drink too so we do share one thing in common.

Hope to meet you soon

Wendy

Title: Re: hello, so I am not alone!
Post by Sisyphus on Nov 17^th, 2004, 7:09am

Pubgirl, so Stephen is out to pasture so to speak. Good on him. Yes, I am actually dying to meet a clusterhead as I have never known anyone before. FILBERT, nice to suggest the pub but unless I am fortunate enough to end the bout there is no chance, as soon as I do though I am well up for it. jack.

Title: Re: hello, so I am not alone!
Post by BobG on Nov 17^th, 2004, 7:34am

Is Mr. Happy the only one that can speak English in this thread.
The people that live on islands sure talk funny.

;;D ::) ;;D

Title: Re: hello, so I am not alone!
Post by pubgirl on Nov 17^th, 2004, 7:42am

I spend half my life on here trying to work out what American words mean, being a foreigner here and all that.

I mean before I came here, I didn't even know what duckbutter was! ;;D

Wendy

Title: Re: hello, so I am not alone!
Post by Sisyphus on Nov 17^th, 2004, 8:47am

DUCKBUTTER!!! [smiley=huh.gif] well stone the crows I think septic has me in a two and eight on that. Island though, surely that can't be true, no man/woman is an island.

Title: Re: hello, so I am not alone!
Post by LeLimey on Nov 17^th, 2004, 9:04am

on 11/17/04 at 07:34:52, BobG wrote:

Is Mr. Happy the only one that can speak English in this thread.
The people that live on islands sure talk funny.

Hoi! Cheeky! I resemble that remark [smiley=laugh.gif]

Title: Re: hello, so I am not alone!
Post by pubgirl on Nov 17^th, 2004, 10:16am

they get upset if you call them septics, they prefer Shermans, but that has two meanings :-X

W

Title: Re: hello, so I am not alone!
Post by LeLimey on Nov 17^th, 2004, 10:23am

LMAO [smiley=crackup.gif]
Have you ever seen Kevin "Bloody" Wilson going on about seppo's?

Title: Re: hello, so I am not alone!
Post by Sisyphus on Nov 17^th, 2004, 1:11pm

apologies to all for the septics remark was unaware it carried any offense, Shermans is cool with me.

Title: Re: hello, so I am not alone!
Post by Testy1 on Nov 17^th, 2004, 2:07pm

Nope. You certainly aren't alone. Good to meet another newbie to the board. I consider this place a life saver. I've already had a man in another thread inform me that I was risking my life with the meds I'm taking. I knew that but it was kind of him to take the time to warn me. There is so much information here that it will take a while to go through it and try the things I haven't already done.
Anyway, all the best to you and yours and again, good to see someone from this side of the Atlantic.

All the best

Jack