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Topic: hello, so I am not alone! (Read 277 times) |
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Sisyphus
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hello, so I am not alone!
« on: Nov 16th, 2004, 8:45pm » |
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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.
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The gods had condemned Sisyphus to ceaselessly rolling a rock to the top of a mountain, whence the stone would fall back of its own weight. They thought there no more dreadful punishment!
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AussieBrian
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Got beer?
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Re: hello, so I am not alone!
« Reply #1 on: Nov 16th, 2004, 9:06pm » |
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Alone you ain't. Welcome home.
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Vulcrania horrendus - twice daily, then two at night in lieu of sleep.
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Sisyphus
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Re: hello, so I am not alone!
« Reply #2 on: Nov 16th, 2004, 9:19pm » |
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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.
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The gods had condemned Sisyphus to ceaselessly rolling a rock to the top of a mountain, whence the stone would fall back of its own weight. They thought there no more dreadful punishment!
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Mr. Happy
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Re: hello, so I am not alone!
« Reply #3 on: Nov 17th, 2004, 1:39am » |
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Alone? Did somebody say alone??
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Have memories of never getting any.
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pubgirl
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Re: hello, so I am not alone!
« Reply #4 on: Nov 17th, 2004, 3:46am » |
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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  )
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
Wendy
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Filbert
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Re: hello, so I am not alone!
« Reply #5 on: Nov 17th, 2004, 6:43am » |
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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.
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LeLimey
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Re: hello, so I am not alone!
« Reply #6 on: Nov 17th, 2004, 6:43am » |
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Hello, nice to meet you!
Just HAVE to say I love your handle I had an old banger once (Montego Estate) that I called Sisyphus 'cos that was who I felt like "trying" to drive it!
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The arsehole I'm divorcing needs to get a life and stop stalking mine
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Sisyphus
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Re: hello, so I am not alone!
« Reply #7 on: Nov 17th, 2004, 6:50am » |
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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!
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The gods had condemned Sisyphus to ceaselessly rolling a rock to the top of a mountain, whence the stone would fall back of its own weight. They thought there no more dreadful punishment!
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pubgirl
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Re: hello, so I am not alone!
« Reply #8 on: Nov 17th, 2004, 7:04am » |
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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 He could teach you a thing or two about liver abuse.  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
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Sisyphus
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Re: hello, so I am not alone!
« Reply #9 on: Nov 17th, 2004, 7:09am » |
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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.
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The gods had condemned Sisyphus to ceaselessly rolling a rock to the top of a mountain, whence the stone would fall back of its own weight. They thought there no more dreadful punishment!
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BobG
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Re: hello, so I am not alone!
« Reply #10 on: Nov 17th, 2004, 7:34am » |
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Is Mr. Happy the only one that can speak English in this thread.
The people that live on islands sure talk funny.
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Stay stressed. Never relax. Never sleep. Ever.
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pubgirl
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Re: hello, so I am not alone!
« Reply #11 on: Nov 17th, 2004, 7:42am » |
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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!
Wendy
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Sisyphus
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At least when its over you can have a beer!
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Re: hello, so I am not alone!
« Reply #12 on: Nov 17th, 2004, 8:47am » |
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DUCKBUTTER!!!  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.
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The gods had condemned Sisyphus to ceaselessly rolling a rock to the top of a mountain, whence the stone would fall back of its own weight. They thought there no more dreadful punishment!
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LeLimey
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Re: hello, so I am not alone!
« Reply #13 on: Nov 17th, 2004, 9:04am » |
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on Nov 17th, 2004, 7:34am, BobG wrote:Is Mr. Happy the only one that can speak English in this thread.
The people that live on islands sure talk funny. |
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Hoi! Cheeky! I resemble that remark 
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The arsehole I'm divorcing needs to get a life and stop stalking mine
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pubgirl
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Re: hello, so I am not alone!
« Reply #14 on: Nov 17th, 2004, 10:16am » |
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they get upset if you call them septics, they prefer Shermans, but that has two meanings
W
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LeLimey
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Re: hello, so I am not alone!
« Reply #15 on: Nov 17th, 2004, 10:23am » |
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LMAO 
Have you ever seen Kevin "Bloody" Wilson going on about seppo's?
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The arsehole I'm divorcing needs to get a life and stop stalking mine
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Sisyphus
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At least when its over you can have a beer!
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Re: hello, so I am not alone!
« Reply #16 on: Nov 17th, 2004, 1:11pm » |
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apologies to all for the septics remark was unaware it carried any offense, Shermans is cool with me.
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The gods had condemned Sisyphus to ceaselessly rolling a rock to the top of a mountain, whence the stone would fall back of its own weight. They thought there no more dreadful punishment!
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Testy1
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Re: hello, so I am not alone!
« Reply #17 on: Nov 17th, 2004, 2:07pm » |
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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
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