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Caine_607
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My experience of not using medication
« on: Mar 29th, 2006, 11:28am »
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Hi there,
 
I've been suffering from cluster headaches now for about 3 years since their unwelcome arrival around the time of my 24th birthday.
 
Despite my GP's apparent indifference I know I suffer from cluster headaches because every one of the forum contributions I have read so far invariably describe the very same symptoms I repeatedly experience as matter of course.
 
Having approached my GP on a number of occassions with the same concern, it has been suggested that a) I drink too much b) I smoke too much c) I don't vary my daily routine enough and d) need to adopt a more regular sleeping pattern.  
 
Can I then assume that all my fellow University students are inevitably going to have to experience the same ordeal I am - I think not ! Perhaps next time I make an appointment to see my GP I should engineer a headache to take place in his waiting room !
 
Anyway, before I get carried away, the main reason for my posting this particular thread was so that I could relay some of the findings that I have made whilst attempting to 'endure' each of my headaches without the benefit of any medically prescribed antibiotics - in case you find you've wandered into the middle of a desert or something !  Tongue
 
The Good Bits
 
1) A Cap or wooly hat - I have found a baseball style cap to be very effective in preventing the onset of alot of headaches, I'm still aware of the 'aura' that indicates the worst (peppery nostrils, mild sensitivity to sensory stimuli etc.) and even a dull pain in the temples and neck but rarely a full blown satanic arrival, I think this works for me because there is a light but constant application of pressure on the temples.
 
2) stacking pillows - Every night I stack 2 very plump pillows on top of one another and never ever ever sleep on 1 side, so as I attempt to wrestle with a deep sense of forboding, I adopt a count dracula style sleeping position on my back with the edge of the aforementioned pillows supporting my head AND my neck - takes some getting used to but has resulted in a significant reduction in 3 o'clock unpleasantries.
 
3) Shut-eye ramrod hot coffee sipping  - This one I'm particularly proud of, when attempting to endure a fullblown suicidal attack or just the onset of one, I quickly whack on the ol' kettle and prepare myself a delicious cup of super-sweet kenko instant. Then I sit on a comfy sofa with my eyes shut and my back rigidly straight but neck relaxed then massage the offending temple whilst sipping small quantities of coffee - this takes some practise and dexterity but certainly helps me a great deal.
 
4) Cool air and hoodie - sounds bizarre I know but I happened upon this by chance when my parents came over and as always not wanting to upset mum, I feigned a case of indigestion then went outside into the garden. As I was standing misserably on the spot with my face against thw wind, I flipped up the ol' hoodie hood I happened to be wearing and was amazed by the mild but instant improvement I felt.
 
The Not-so-good Bits
 
1) Prolongued lounging - actuallt the position seems quite significant in my experience, when watching TV whilst lounging on my fave sofa, I tend to lie on one side with my legs supported by the far armrest and support my head with the palm of whichever hand is at the end of the arm that happens to be resting on the other sofa armrest - this for me is an absolute guarantee of a premature CH.
 
2) Significant changes in normal sleep cycle - I normally get to bed at some ridiculous hour like 3 am because I'm a student and my first lecture on any given day is at 11am, however, when my parents come over to visit, I like to put on a good show by heading of to bed at about 11:30-12:00 - This will almost certainly guarantee that I wake up 3 o'clock anyway but with the added frivolity of experiencing a vice around my head - gotta love the irony ! It will also mean that I will have to take an extra 30 mins before breakfast because I will be suffering from a second kick in the teeth on awakening, I attempt to counteract this eventuality with clever solution no.s 3 and 4 in the above mentioned 'good bits' !
 
Anyway, those are all the things I've found that have some element of consistency in my experience of CH.
 
Hope it helps..... =D
« Last Edit: Mar 29th, 2006, 3:06pm by Caine_607 » IP Logged
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Re: My experience of not using antibiotics
« Reply #1 on: Mar 29th, 2006, 11:35am »
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Glad to hear from you Caine.  
I am glad the hat thing works for you but for me I wear a ball cap all day every day and it dont do a thing.  
All antibiotics do for me is help with sinus infections caused by the flood into my sinisus when getting abused by the beast. I can never seem to clear them all the way between hits. Try to check O2 for relief read the links to the left and be wary of docs that dont care.
Good luck and hope you can stay PF.
 
Mike
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Re: My experience of not using antibiotics
« Reply #2 on: Mar 29th, 2006, 11:45am »
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Hey Ghost,
 
Thanks for replying.. you are my very first bonafide thread response !!!
 
Actually, it's fascinating what you said about your sinuses as I have long held the belief that sinuses are very significant in CH attacks. The fact that I get a bunged up nose and my eyes start to redden and water must indicate that the two elements aren't unrelated !
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Re: My experience of not using antibiotics
« Reply #3 on: Mar 29th, 2006, 12:11pm »
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Hi Caine!
I'm not too far from you! I'm in Bingham, just down the A52 a bit  Smiley it sounds like you need to see another doctor hon, it's your right and also you have the right to see a headache specialist neuro as well (Good luck, I know about the hospital in Derby!) Are you at Uni there but from somewhere else or are you a Derby-ite? (don't mention football Helen, just don't do it!  Lips Sealed ) If you are from elsewhere you have double the advantage in that you can see a doctor "at home" or while you are there. If not try another doctor within the same practise or switch practise's.
Alot of what you said is stuff that works for me too, never sleep lying flat, cold air (try the air con in a car at the coldest setting with your face next to the vent if you can!) Also try a bag of frozen peas wrapped in a tea towel.. it helps alot. Some people find heat helps but for me that's a huge trigger.
Caffeine is a well recognised abortive here, Red bull is a very popular (and portable) abortive too. Its best used cold and I know it's expensive but Tesco's have their own version which works as well for less than half the price.
I know others who talk about tying a bandana around their head (similar to your hat) so yet again, you've found all these things by trial and error but they are things we all do.
I've organised a whole pile of meet and greets here in the UK, there is one this coming Friday in Grantham if that isn't too far for you but I have one organised in Derby on the 18th of August if you are about then. It's good to meet other ch'ers!
Keep fighting to see a neuro, that's what you need. If you need any help shout, I'll help all I can okay?
Take care
Helen
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Re: My experience of not using antibiotics
« Reply #4 on: Mar 29th, 2006, 12:32pm »
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Hello Caine and welcome to the asylum.  From what you posted, its time for you to find another doc.  Don't waste your time with a doctor who thinks stopping smoking and drinking will make the attacks go away.  Also, CH is not an infectious disease that can be cured with antibiotics.  It's a Trigeminal Autonomic Cephalalgia believed to be caused by a malformation of the hypothalamus.
 
Keep reading everything you can in the various message boards here.  Tons of good information and information is the key to getting proper medical treatment.  You might contact OUCH-UK about a list of doctors in your area who know how to diagnose and treat CH.  They also have a phone number you can call and get help.
 
Good luck.
 
Edited for spelling.  You're on the job as usual, Helen.  Listen to her, Caine.  She'll point you in the right direction.
 
« Last Edit: Mar 29th, 2006, 12:36pm by Gator » IP Logged
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Re: My experience of not using antibiotics
« Reply #5 on: Mar 29th, 2006, 12:46pm »
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Wow Helen,
 
I'm speechless, what a lovely response ! So you're in Birmingham, I know it well.. my childhood friend lived near edgbaston.
 
I was born in a little village just south of Derby called Shardlow but then my parents moved to Liverpool when I was about 14 which came as a bit of a culture shock but alas, here I am again in possibly the dreariest town in England - somehow it just doesn't seem to be living up to my rosey coloured memory !
 
Hahaha, I'm very impressed with the admirable restraint you showed in denying yourself a good gloat over the football but believe me Helen, you're perfectly welcome to voice your satisfaction as I'm terrible at keeping pace with the football results.
 
It's interesting that you like so many others including myself find that cold objects or environments have such a significant impact on the overall duration and intensity of a headache ! I've never tried warm things but in view of my preference for cold objects as opposed to room temperature ones, it's unlikley that warm things would have quite the desired effect.
 
Perhaps more interestingly is the fact that caffeine has a positive effect on a CH sufferers attack, I always assumed that stimulants would only heighten one's sensitivity... craaazy !!! Oh and next time you go to Tesco, buy a couple of cans of 'V', it's much tangier than red bull and not quite as sickly - comes in a green can... yummm !
 
I would absolutely llloovvveeee to come to a CH soiree, I don't socialise as much as I'd like to as many of my student friends like to hit the tiles but I can only drink relatively small quantities of assorted alcoholic beverages and draft beers are my devil's beverage of choice... one pint and my otherwise delightful evening comes to abrupt end.
 
Unfortunately I won't be in Derby this friday as mum is celebrating her 65th and has invited me up to Liverpool to oversee the festivities however I would be honoured to accept your invitation to the August meet. I've never been to one of these social events, is it black tie ? Do I have to arrange anything in advance or anything ? Hope you can fill me in.. you're obviously alot more organised than I am. Tongue
 
As for the doctors and neuro's, I have given up on my GP all together and I'm a terrible ostrich so the idea of meeting one would be too terifying to comprehend. Thanks again for all your kind words Helen and I look forward to seeing your in the not too distant...
 
Incidentally, let me extend your kind offer further - should you ever need help or support, don't hesitate to ask, I shall check the forums from time to time and my e-mail addy is: *************** - removed at LeLimey's request hehe Tongue
 
TTFN,
 
Ben
« Last Edit: Mar 29th, 2006, 1:45pm by Caine_607 » IP Logged
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Re: My experience of not using antibiotics
« Reply #6 on: Mar 29th, 2006, 12:57pm »
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Dear Gator,
 
Thanks ever so much for clarifying my condition.. I confess that whilst I have attempted in my limited capacity to better understand the symptoms, I haven't really spent a great deal of time researching the cause.
 
Judging by your post, you're clearly as well informed and articulate as the other genii in the forum.. I'm starting to feel distinctly inadequate ! haha
 
Anyway, thanks a bunch and I hope I'll see you around.. cool hairdo btw Cheesy
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Re: My experience of not using antibiotics
« Reply #7 on: Mar 29th, 2006, 1:04pm »
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Bingham you nutter not Birmingham! Just outside Nottingham!  laugh
I've made a note of your email addy, surprise, surprise guess who else is a slave to NTL?! CH meet and greets are very informal, literally a meeting in a pub nd the chance to chat and compare things that work or don't work etc and just chill out. You'll find a heck of a lot more get's talked about than just cluster's I can tell you  Roll Eyes You don't need to do anything other than just turn up. (although it's always nice to know roughly how many are coming!)
We do need to get you sorted out with a new doctor though, there are alot of meds which are very effective and also, you really should have an MRI to check there is nothing abnormal in your noggin (You are a mere male aren't you? Brain cells would be very lonely  Tongue  Grin ) I'd really push you on that one, if for nothing else do it for peace of mind and you're poor old mum! We have some fantastic ch'ers in Liverpool who you'd enjoy meeting. Thats an interesting point though since you only live there and aren't actually from there.. are you still a scouse git?!  
I think on that note I shall shut up now!
Take care and LISTEN TO ME ON THE DOCTOR BIT!
Helen
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Re: My experience of not using antibiotics
« Reply #8 on: Mar 29th, 2006, 1:53pm »
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on Mar 29th, 2006, 11:28am, Caine_607 wrote:

2) stacking pillows - Every night I stack 2 very plump pillows on top of one another and never ever ever sleep on 1 side, so as I attempt to wrestle with a deep sense of forboding, I adopt a count dracula style sleeping position on my back with the edge of the aforementioned pillows supporting my head AND my neck - takes some getting used to but has resulted in a significant reduction in 3 o'clock unpleasantries.

 
Yep, never lie down flat, I now have to sleep sitting up, I use a wedge, but have it up on end with pillows lining it and 2 at the top. The best for me it to sleep on a couch that has the arm against the wall with pillows filling the space, that way I be supported without sliding down. Also a recliner is good, but i need to push it against the wall so it doesn't recline or else I get hit.
 
on Mar 29th, 2006, 11:28am, Caine_607 wrote:

4) Cool air and hoodie - sounds bizarre I know but I happened upon this by chance when my parents came over and as always not wanting to upset mum, I feigned a case of indigestion then went outside into the garden. As I was standing misserably on the spot with my face against thw wind, I flipped up the ol' hoodie hood I happened to be wearing and was amazed by the mild but instant improvement I felt.

 
Cold air is a great abortive, outside when it is -30 in your underwear is a great way to abort a hit.
 
 
on Mar 29th, 2006, 11:28am, Caine_607 wrote:

1) Prolongued lounging - actuallt the position seems quite significant in my experience, when watching TV whilst lounging on my fave sofa, I tend to lie on one side with my legs supported by the far armrest and support my head with the palm of whichever hand is at the end of the arm that happens to be resting on the other sofa armrest - this for me is an absolute guarantee of a premature CH.

 
The combination of laying down and watching something relaxing is a guaranteed hit for me. If I am watching something really enjoyable I try to sit in an uncomfortable position, or even stand. I used to lay in bed watching Dr Who or Red Dwarf until I got slammed a few times, now I know never to relax.  
 
Opus/Paul
 
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Re: My experience of not using antibiotics
« Reply #9 on: Mar 29th, 2006, 2:04pm »
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Oooohhhh Bingham, sounds like a delightful little backwater - I imagine they must have a top notch football team ! Tongue hehe
 
I'm only an NTL slave because I don't want to be a BT automaton and the free modem whotsits are pretty cool.. I have hoarded 3 of them now, I wonder if they worth anything on e-bay ?
 
I'll be looking forward to our next CH gathering, do we bring our own oxgen tanks or are intravenous injections supplied at the bar ? hehe
 
As a male, it's very important that I try and prolongue the life of my brain cell... don't those MRI machines use xrays or electro-magnets or something. I wouldn't want to bake my fragile noggin, and what if they suddenly encounter something worse like uber-premature alzheimers or something ??? Also, mum is quite possibly the single biggest worrier the world has ever encountered, if I told her I needed an MRI, she's have a heart attack.
 
I spent 12 years in Liverpool, with a transfer back to Derby for good behaviour which makes me an honourary scousse git... that means, that you should warn all your CH pals at the next convention not to bring their cars, mobiles or mp3 players.. and er, wallets ! hehe Tongue
 
Anyway, got your e-mail Hels (hope you don't mind the surrepticious shortening of your 2 sylable name - it's a scousse trait I developed and haven't been able to kick !), thanks for all the good advice and stay in touch !
 
Benjimus
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Re: My experience of not using antibiotics
« Reply #10 on: Mar 29th, 2006, 2:11pm »
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on Mar 29th, 2006, 12:11pm, LeLimey wrote:
(don't mention football Helen, just don't do it!  Lips Sealed )  

Football, did somebody say football? You a Giant fan or a Redskin fan?referee
Please don't tell me you watch kick the can? Tongue
Steve the Giant fan Grin  
 
 
 
 
 
 
 
 
just kidding Helen Roll Eyes
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Re: My experience of not using antibiotics
« Reply #11 on: Mar 29th, 2006, 2:19pm »
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on Mar 29th, 2006, 2:11pm, imnotbub wrote:

Football, did somebody say football? You a Giant fan or a Redskin fan?referee
Please don't tell me you watch kick the can? Tongue
Steve the Giant fan Grin  
 
 
 
 
 
 
 
 
just kidding Helen Roll Eyes

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Re: My experience of not using antibiotics
« Reply #12 on: Mar 29th, 2006, 2:23pm »
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I hope there isn't some sort of unwritten rule about replying to every individual thread response that I don't know about but that everyone else is....
 
Paul, God only knows, I feel for you... I knew my CH's were debilitating enough and have tainted those moments of pure bliss that I used to look forward to so much (good call with the 'red drawf' btw !) but due to my narcissistic tendancies, I never appreciated just how utterly insignificant they are compared to those of you who, despite your rotten hand, simply soldier on in defiance - I doff my baseball cap to you sir !
 
I never tried sleeping in a wedge shaped setup.. might give it a pop tonight - cheers for the advice. Unfortunately, I live next to a busy dual carriageway so standing outside in my Mr Men boxer shorts is likely to grab more attention than I'm used to but sound advice... I could always leave the bedroom windows open whilst I sleep, interesting idea !
 
Anywho, thanks for the input Paul matey, I can certainly use it. I hope you get better soon, maybe it's just sod's law that all the really nice people seem to be dealt losing hands but if it's any consolation, I think you like all the other winners on this site are super-beings hehe and as such I expect you all to get well soon so we can have a massive international CH survivors reunion.. the first round is on me !!!
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Re: My experience of not using antibiotics
« Reply #13 on: Mar 29th, 2006, 2:24pm »
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Steve how old are you? don't count tomorrow!  laugh
FOOTBALL is what we call Soccer, thats a poofy word and only big girls blouses use it  Tongue  Tongue  Tongue
(How to start a riot part 1!)
Ben I'd say Bingham was the arsehole of nowhere but Derby beat it to the title and as for you being a scouser.. well! Everyone nail down your keyboards now, those little bleeders would nick anything!
You still need to see a neuro mr curly-perm-'n-a-shell-suit, if you don't you can't get the ch'ers best weapon, OXYGEN! It's simply, in my humble opinion, the best (and most user-friendly!) abortive on the planet. I can abort a hit ni 5-7 minutes which is as quick or even quicker than the Imigran injections.
Before I go into talking about any other options how long do you're cycles usually last? And how often do you get them? IE like for 6 weeks every spring, two cycles  year, once every four years.. it varies for everyone so it's not a trick question!
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Re: My experience of not using antibiotics
« Reply #14 on: Mar 29th, 2006, 2:27pm »
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on Mar 29th, 2006, 2:24pm, LeLimey wrote:
Steve how old are you? don't count tomorrow!  laugh
FOOTBALL is what we call Soccer, thats a poofy word and only big girls blouses use it  Tongue  Tongue  Tongue
(How to start a riot part 1!

 
 
48 and I love you too Helen.
Just remember, you said soccer was poofy, not me. sgrin
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Re: My experience of not using antibiotics
« Reply #15 on: Mar 29th, 2006, 2:28pm »
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Hahaha... I love it when you Americans start talking football, we Brits mean REAL football where you have to use your foot to move the ball.....
 
I've been wondering what would happen if the French rugby team came up against your 'superbowl' champion American football team... hehe.. interesting proposition eh ! Tongue
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Re: My experience of not using antibiotics
« Reply #16 on: Mar 29th, 2006, 2:32pm »
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on Mar 29th, 2006, 2:28pm, Caine_607 wrote:
French rugby team came up against your 'superbowl' champion American football team... hehe.. interesting proposition eh ! Tongue

 
 
French? crackup
 
If it was easier, woudn't at least ONE of them be playing football? It's gotta pay better then French rugby! deal2
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Re: My experience of not using antibiotics
« Reply #17 on: Mar 29th, 2006, 2:46pm »
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Well Helen,
 
Can't argue with your observations about Bingham and Derby hehe... I always find it slightly disturbing that al the inhabitants of Derby look the same... It's like stepford wives.. I'm convinced that the gene pool has been exhausted ! Tongue
 
I'll also have you know that Scoussers take great pride in there extraneous fashion accessories, shellsuits were a utopian vision of yesteryear.. things have moved on in great leaps and bound, first it was Adidas three-stripes, the Helly Hansen and now that old faithful and northern stalwart.. the Kappa trackie !!! (Anyway, you forgot the gold sovereign ring Tongue)
 
I've heard about pure oxygen, it certainly sounds very promising and something I've considered but despite the agonising pain that is a CH I'm just not used to remedying my ailments by artifical means - that's not to say that I wouldn't, just that the idea of sucking on a cannister of pure O2 paints a rather alien picture in my head...
 
I'm afraid I have no idea bout cycles and things and I'm useless at practical arithmetical taks or abstract reasoning so I'll just give you a quick run down of my CH history to date.. no doubt you can tell me more than my GP did !
 
First bout came about around 24th b'day out of the blue mid-afternoon, continued to have 1 same time each day for about a week then they dissapeared for about 3 months then....
 
1 headache every day, same time for about 4 months followed by a refreshing 3 months'ish of no headaches then....
 
a daytime headache followed by "bah !!!".. my first 3am headache.... after that it's all a bit of a blur (as so much of my Uni life is...Tongue) but I've never had more than 2 months of non-headache periods (I belief those are called remission periods aren't they ?) and I can't remember having more than 4 remission periods of varying durations.
 
Currently, I think I'm at the tail-end of a remission period as I have been getting about 1-3 headaches a day/night of kip rating 3-4 roughly for the past week after a rather tasty 3 weeks of non-headaches !
 
Hope that's clear...  Cheesy
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Re: My experience of not using antibiotics
« Reply #18 on: Mar 29th, 2006, 2:48pm »
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Haha.. very astute observation imnotbub !!!
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Re: My experience of not using antibiotics
« Reply #19 on: Mar 29th, 2006, 4:22pm »
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on Mar 29th, 2006, 2:23pm, Caine_607 wrote:
...so standing outside in my Mr Men boxer shorts is likely to grab more attention than I'm used to...

 
Don't flatter yourself! Think about it (y'know loike *sniff* in my bestest scouse accent) there you are, eyeball bulging, snot flailing everywhere gripping your head and wailing like a banshee.. and you think they'll notice your "Mr tickle" boxers?? Guess again!  laugh
 
on Mar 29th, 2006, 2:27pm, imnotbub wrote:

 
 
48 and I love you too Helen.
Just remember, you said soccer was poofy, not me. sgrin

 
 
You're just a spring chicken honeybun and I'm getting closer to your age by the day!  Grin BTW, I said SOCCER was a poofy word not the game. Bloody spin doctor!
 
on Mar 29th, 2006, 2:28pm, Caine_607 wrote:

 
I've been wondering what would happen if the French rugby team came up against your 'superbowl' champion American football team... hehe.. interesting proposition eh ! Tongue

 
S'easy.. when playing the french you have two choices. Either use a starting pistol or just go for the low-tech approach and shout "BANG!!" either way they hit the deck or run like rabbits leaving the field of dreams vacant apart from a lingering smell of garlic!  Roll Eyes
I'm telling you, I should have Svenn's job!*
 
*England manager not our mad viking!
« Last Edit: Mar 29th, 2006, 4:35pm by LeLimey » IP Logged





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Re: My experience of not using medication
« Reply #20 on: Mar 29th, 2006, 4:30pm »
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Quote:
I've been wondering what would happen if the French rugby team came up against your 'superbowl' champion American football team... hehe.. interesting proposition eh !

The French would surrender.  Grin
 
Isn't football that game that takes place among hooligans in the stands while the players look on? hammer
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Re: My experience of not using medication
« Reply #21 on: Mar 29th, 2006, 4:33pm »
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That's right Karma!
when you go to see Derby or Liverpool the police frisk you for weapons on the way in... and if you haven't got any they give you some  Roll Eyes
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karma
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Re: My experience of not using medication
« Reply #22 on: Mar 29th, 2006, 4:48pm »
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Looks like I hit a nerve. laugh
Gotta give you guys A+ for passion. Even if you haven't figured out how to play a sport that involves hands yet.
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
Cricket doesn't count. Tongue
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LeLimey
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Re: My experience of not using medication
« Reply #23 on: Mar 29th, 2006, 4:53pm »
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Cricket.. God's way of showing you what death is really like.
 
Rugby .. ah there you go- now thats played with hands Karma. By men with odd shaped balls.  Shocked
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The arsehole I'm divorcing needs to get a life and stop stalking mine

karma
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Netherlands 
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I love YaBB 1G - SP1!

   


Gender: male
Posts: 857
Re: My experience of not using medication
« Reply #24 on: Mar 29th, 2006, 5:04pm »
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Cricket.. God's way of showing you what death is really like. Tell me about it. I live in the West Indies
 fixed it Grin
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Rugby .. ah there you go- now thats played with hands, feet, heads and no padding Karma. By real men with odd shaped balls who love nothing better than to kick ass and drink beer and steal your women.  

 
Got our but kicked by a U.K. college side that was touring the East Coast of the U.S. I was going to college myself but playing scrum half for a city team in North Carolina. Best weekend I ever had!
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