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Cluster Headache Help and Support >> Cluster Headache Specific >> Do we all have something in common? http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291979722 Message started by julyn on Dec 10th, 2010 at 6:15am |
Title: Do we all have something in common? Post by julyn on Dec 10th, 2010 at 6:15am
I was wondering if there was ever some kind of survey done to see ,even though we are all very different,what we all have in common that might have birthed the beast in us.Seems to me this forum would be a good vehicle for this.There seems a lot of studies have been done to look into each of us separately but not together.
The hormone thing comes up as a cause a lot and in my experience hormones are strongly influenced by two major things....diet and even more emotions. Hormones, for me, are the communicators that run our machine and something seems to be messing up our hard disk so that the electric signals seem to be shorting out or flipping out. Is it a silly idea to put a ch survey from ch ers, together to perhaps find out if there are things and we have that we all have in common?The white coats(Dr's,specialists ect) have no idea what the cause is and we know better than most about this hideous pain,if you ask me. |
Title: Re: Do we all have something in common? Post by wimsey1 on Dec 10th, 2010 at 7:00am
The prevailing theory is quite simply a screwed up hypothalmus; or an extra ganglion of nerves that others do not have and fire off at a certain point, and voila, we have a CH. CHs are now classified as a primary headache meaning it is not secondary to something else: tension, smoking, bad breath, that kinda thing. We do have something in common: we hurt, a lot. At the worst possible times in the worst possible way. Some of us weren't hugged enough as a child perhaps...but I don't think that's the root cause. Blessings. lance
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Title: Re: Do we all have something in common? Post by Guiseppi on Dec 10th, 2010 at 7:24am
What Lance said! We've done countless formal and informal surveys over the years, looking at childhood exposures, injuries, body types, eye color, so far no luck on that one common thread! No reason to stop looking, I'm still hoping someday we'll have a forehead slapping, Oh Duh, moment and we'll spend the rest of our lives thinking how dumb we were we didn't see it sooner! ;)
Joe |
Title: Re: Do we all have something in common? Post by Brew on Dec 10th, 2010 at 7:30am
A defective hypothalamus.
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Title: Re: Do we all have something in common? Post by julyn on Dec 10th, 2010 at 7:40am
ok...
sorry Lance that you weren't hugged enough...I'll send you one ;) know about the common pain stuff... am a chronic for many many years and get that bit...cute though. Extra ganglion??? If that is the case then why are many in remission for years at a time? |
Title: Re: Do we all have something in common? Post by Guiseppi on Dec 10th, 2010 at 8:55am
And that's just the start of the puzzling questions?
Why does lithium work so well for me, and worthless for others? Same with verap and topomax and prednisone? Why do some go episodic, chronic, some never switch sides, some do, some go 2 sided!!! Some go into 2, 3, 10 year remissions. It's enough to drive you crazy if you dwell on it too much! ;D Joe |
Title: Re: Do we all have something in common? Post by BobG on Dec 10th, 2010 at 10:26am
Some of us weren't hugged enough as a child
Some of us were potty trained to young Some of us were breast fed too many years. Some not at all. It's your mother's fault! ::) |
Title: Re: Do we all have something in common? Post by vietvet2tours on Dec 10th, 2010 at 10:51am
We have an opposable thumb.
Potter |
Title: Re: Do we all have something in common? Post by julyn on Dec 10th, 2010 at 11:05am
Joe;
I have no proof but have delved into these things and it seems that the meds you named work on different inflammations so depends where it is. Topimax works on an inflammation in the neck and back area,lithium in the nerves of the brain area,prednisone on the inflammations in the stomach and bowel area and verapamil in the vascular area.Of course these may work in other areas but primarily these. And I believe they change sides when they have something to do with the hormones pituitary and pineal glands. |
Title: Re: Do we all have something in common? Post by julyn on Dec 10th, 2010 at 11:07am
ps
thanks George....I will. |
Title: Re: Do we all have something in common? Post by julyn on Dec 10th, 2010 at 12:02pm
And oh yeah....about chronics and episodics....i'm not sure.Something i would like to investigate.However being chronically chronic myself i can only guess that chronics are the ones with the bigger butting horns.More stubborn,fighting against..something or maybe anything.Perhaps chronics have a past history of drug or alcohol abuse,I did.Or have not taken care of themselves physically for a longer periods of time.Perhaps we bury emotions more are madder,don't change easy....stuff like that.
I would like to know from others if this is so as it is just a theory until now. |
Title: Re: Do we all have something in common? Post by starlight on Dec 10th, 2010 at 12:37pm
One thing I find interesting is that my 1st cluster headache (rogue hit) happened when I had mono followed by a cycle a few months later when the mono had "cleared up" (it then resurfaced later on and I was diagnosed with chronic mono). Was it caused by the mono? Not necessarily but maybe it was a stressor that brought out the CH. Don't know--not convinced there was a connection but it does stand out in my mind.
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Title: Re: Do we all have something in common? Post by mikstudie on Dec 10th, 2010 at 1:04pm
When you guys figure it out let me know,I want to rid of mine (what ever it is) ASAP!!!!
In common: Headaches. (sorry couldn't resist) |
Title: Re: Do we all have something in common? Post by starlight on Dec 10th, 2010 at 3:28pm
Oh...and I do think that it was discussed on here a couple of years ago that many people who suffer from CH tend to be on the taller side. One time I saw some report on the internet (don't remember what it was called) that said you are at higher risk of getting CH if you are over 5 foot 8 inches. I have no idea if this is true. I just do not know if this is a myth or not. Probably a myth--don't know.
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Title: Re: Do we all have something in common? Post by vietvet2tours on Dec 10th, 2010 at 3:46pm Brew wrote on Dec 10th, 2010 at 7:30am:
Yep. The end. Potter |
Title: Re: Do we all have something in common? Post by julyn on Dec 10th, 2010 at 4:25pm
The reactions say enough don't you think!!!
Exactly as i had said in my post.Unable to accept,not open to something new, bullheaded ,hard,critical and judgemental .HMMMMMM Thanks for confirming my study. PS Thanks for trying Starlight. |
Title: Re: Do we all have something in common? Post by vietvet2tours on Dec 10th, 2010 at 4:31pm julyn wrote on Dec 10th, 2010 at 11:05am:
Maybe you could provide some links on how these drugs work. Potter |
Title: Re: Do we all have something in common? Post by deltadarlin on Dec 10th, 2010 at 4:54pm julyn wrote on Dec 10th, 2010 at 11:05am:
Sorry to disabuse you of your notion, but Topamax is NOT an antiflammatory, nor is Lithium. Starlight, The tallness theory was never proven (you attend a conference of clusterheads and you'll see people of all different sizes, shapes and whatever.). As Potter said, it's the hypothalmus (and he's not being ornery or hardheaded, just been here a long time and pretty much seen it all). |
Title: Re: Do we all have something in common? Post by julyn on Dec 10th, 2010 at 5:23pm
no they are not necessarily anti inflammatories but they do remove blockages,which many drs would call inflamations....sometimes sensory,sometimes hormonal and sometimes vascular or neural.
fyi;Inflammation (Latin, inflammare, to set on fire) is part of the complex biological response of vascular tissues to harmful stimuli, such as pathogens, damaged cells, or irritants.[1] [i]Inflammation is a protective attempt by the organism to remove the injurious stimuli and to initiate the healing process. The traditional names for signs of inflammation come from Latin: * Dolor (pain) * Calor (heat) * Rubor (redness) * Tumor (swelling) * Functio laesa (loss of function) [6] Ok lets call it loss of function!!Happy now. I am only trying to help and give you some food for thought so......... Bash me all you want but why don't you try and check it out,do your own investigation and study with this info and prove me wrong instead of all this waste of time bla bla. [/i] |
Title: Re: Do we all have something in common? Post by starlight on Dec 10th, 2010 at 5:32pm
With verapamil, there are also receptors in the hypothalamus that bond with verapamil, but that being said from what I have read I am not sure they understand the mechanism by which it helps cluster headaches in some individuals.
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Title: Re: Do we all have something in common? Post by vietvet2tours on Dec 10th, 2010 at 6:20pm julyn wrote on Dec 10th, 2010 at 5:23pm:
Nobody is trying to prove you right or wrong. We just shouldn't promulgate misinformation. Potter |
Title: Re: Do we all have something in common? Post by julyn on Dec 10th, 2010 at 6:53pm
Oh yeah...so what do topimax and prednisone and oxygen have to do with the hypothalamus?
I was chronic for around 13 years with a two year break and now i am back....none of these meds worked on me ...so if it was the hypothalamus for sure, the end,and all that, then why didn't they,or shrooms or neurotransmitters work for me? Who doesn't know what? and what do we really know.............. Besides that it hurts so bad that one should be sure to examine all the possibilities to make it go very far away!!! |
Title: Re: Do we all have something in common? Post by BobG on Dec 10th, 2010 at 7:24pm julyn wrote on Dec 10th, 2010 at 6:53pm:
The meds don't do anything to the hypothalmus. The pain of cluster attacks comes from dialated blood vessels that are pressing on the nerves surrounding the vessels. The meds are to get the vessels to contract and reduce the pressure. Please don't think some of the above messages were an attack on you. My 1st message to you may have sounded kinda un-kind. Sorry, it wasn't meant that way. |
Title: Re: Do we all have something in common? Post by vietvet2tours on Dec 10th, 2010 at 7:28pm
When we can fix the hypothalamus Dj can flip the switch on this site, till then we just gotta do the best we can with the tools we got.
Potter |
Title: Re: Do we all have something in common? Post by deltadarlin on Dec 10th, 2010 at 8:15pm julyn wrote on Dec 10th, 2010 at 5:23pm:
I just want to know where you are getting your information from. Over the years, lithium has been shown to act principally on two targets in the brain. It is known to inhibit enzymes that maintain a signaling pathway from the cell membrane. And it inhibits an enzyme called glycogen synthase kinase 3 (GSK-3), which is important in the cell's response to many signaling molecules. But, whether these targets are important for the therapeutic effects of lithium has been unclear. Verapamil is classified as a calcium channel blocker. It works by relaxing the blood vessels so the heart does not have to pump as hard. It also increases the supply of blood and oxygen to the heart and slows electrical activity in the heart to control the heart rate. Topamax is an anticonvulsant. It works by decreasing the electrical activity in the brain. Which one of these remove blockages? BTW, upping the fiber in your diet is also a good way to remove blockages. |
Title: Re: Do we all have something in common? Post by Ginger S. on Dec 10th, 2010 at 9:11pm
Julyn I have read through this entire thread and although some responses have been made with a winning sense of humor, most have been made with earnestness and years of knowledge.
No one here has been... julyn wrote on Dec 10th, 2010 at 4:25pm:
Just my [smiley=twocents.gif] |
Title: Re: Do we all have something in common? Post by julyn on Dec 11th, 2010 at 5:50pm
Ok Sorry;
Verapamil These effects are mediated by inhibition of calcium ion influx into smooth muscle cells of the arteriolar wall. Proton magnetic resonance studies have been utilized to demonstrate calcium binding to a neutral polypeptide containing only peptide functional groups, Lithium was first used in the nineteenth century as a treatment for gout after scientists discovered that, at least in the laboratory, lithium could dissolve uric acid crystals isolated from the kidneys. Uric acid is more toxic to tissues than either xanthine or hypoxanthine Topamax Cholesterol and plaque contribute to clogging arteries which will reduce blood flow. Prednisone is a synthetic corticosteroid drug that is particularly effective as an immunosuppressant drug. It is used to treat certain inflammatory diseases. Blockages. Maybe there are even more that they don't know about?They obviously don't know everything. Ok you say hypothalmus I think the brain stem deserves some investigation; In vertebrate anatomy the brainstem (or brain stem) is the posterior part of the brain, adjoining and structurally continuous with the spinal cord. The brain stem provides the main motor and sensory innervation to the face and neck via the cranial nerves. Though small, this is an extremely important part of the brain as the nerve connections of the motor and sensory systems from the main part of the brain to the rest of the body pass through the brain stem. This includes the corticospinal tract (motor), the posterior column-medial lemniscus pathway (fine touch, vibration sensation and proprioception) and the spinothalamic tract (pain, temperature, itch and crude touch). The brain stem also plays an important role in the regulation of cardiac and respiratory function. It also regulates the central nervous system, and is pivotal in maintaining consciousness and regulating the sleep cycle. |
Title: Re: Do we all have something in common? Post by AussieBrian on Dec 11th, 2010 at 6:10pm
Closest I've seen to a Cluster trait is that all the ladies here at ch.com are stunningly beautiful.
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Title: Re: Do we all have something in common? Post by vietvet2tours on Dec 11th, 2010 at 6:12pm julyn wrote on Dec 11th, 2010 at 5:50pm:
This is pointless. I'm out. Potter |
Title: Re: Do we all have something in common? Post by Melissa on Dec 11th, 2010 at 8:58pm julyn wrote on Dec 11th, 2010 at 5:50pm:
A lot of the information that has been given to you, is directly from reputable neurologists. The source of our pain has been debated for decades. Do you think you can figure out what the key is? If so, more power to you! But please try to remember there are people here who have suffered for years and years and have heard all there is to hear about possible causes, so called cures, a multitude of treatments and snake oil. |
Title: Re: Do we all have something in common? Post by Ginger S. on Dec 11th, 2010 at 11:34pm julyn wrote on Dec 11th, 2010 at 5:50pm:
First I would note that : Arteriolar vasodilators are substances that preferentially dilate arterioles. When used on people with certain heart conditions, it causes a phenomenon known as the cardiac steal syndrome. Arteriolar vasodilators include: * hydralazine * minoxidil * nitroprusside Which is not what a CH'er wants or needs we need vasoconstrictors such as O2, and this suggests there is no blockage/constriction but one is needed. Did you actually mean to say arteriole? If Verapamil acts as a calcium blocker... Where is the blockage prior to the introduction of the Calcium blocker Verapamil? The need for a Calcium blocker would suggest there is no blockage there or that one is needed. julyn wrote on Dec 11th, 2010 at 5:50pm:
An unrelated proposed mechanism of action put forth at the University of Pennsylvania in 1996 posits that lithium ion deactivates the GSK-3B enzyme. The regulation of GSK-3B by lithium may affect the circadian clock, and recent research (Feb 2006) seems to support this conclusion. When GSK-3B is activated, the protein Bmal1 is unable to reset the "master clock" inside the brain; as a result, the body's natural cycle is disrupted. When the cycle is disrupted, the routine schedules of many functions (metabolism, sleep, body temperature) are disturbed. Lithium may thus restore normal brain function after it is disrupted in some people. The complete mechanism related to mood in this mechanism is not hypothesized. And then there is this: Lithium carbonate has been found to be effective in treating chronic cluster headaches, possibly due to its ability to its impact on the electrical system within the brain. Again per the Bold areas if Lithium is doing the Blocking/deactivating where is the prior blockage? I could go on but after fighting two CH hits already today I am worn out!! I will however leave you with this Julyn Cluster headaches have been classified as vascular headaches. The intense pain is caused by the dilation of blood vessels which creates pressure on the trigeminal nerve. While this process is the immediate cause of the pain, the etiology (underlying cause or causes) is not fully understood. Dilation indicates WIDENING/OPENING not blockage or closing. |
Title: Re: Do we all have something in common? Post by MJ on Dec 12th, 2010 at 1:26am AussieBrian wrote on Dec 11th, 2010 at 6:10pm:
I'm in then. |
Title: Re: Do we all have something in common? Post by MJ on Dec 12th, 2010 at 1:44am
Verapamil I suspect works more in the way of its ability to stabilize nerve impusle signals with calcium ion channels wich in turn reduce the signals to the vessels the heart etc... A beta blocker.
Prednisone works not only as an anti infammatory but in its ability to overcome or even render useless immune system responses. We all have a way to overstate what any drug does and truth be known, some of these, no one knows what they really do its just speculation. Seem to work for some though is how it goes. Like was said earlier in this thread the one commonality between us all is CH. and as the Aussie Brian says stunning good looks. |
Title: Re: Do we all have something in common? Post by Shuli on Dec 12th, 2010 at 5:51pm AussieBrian wrote on Dec 11th, 2010 at 6:10pm:
I heart Aussies. |
Title: Re: Do we all have something in common? Post by thebbz on Dec 13th, 2010 at 2:12am Quote:
Quote:
I hear they are as intelligent, as they are beautiful. ;) The men with CH have style, class and make Antonio Banderaras look like Shrek. That's just what I heard. I have no real data to back that up. :-X ;D the bb |
Title: Re: Do we all have something in common? Post by thebbz on Dec 13th, 2010 at 2:51am
Clusterbabes.com
HMmmmmm |
Title: Re: Do we all have something in common? Post by Ginger S. on Dec 13th, 2010 at 6:36am wrote on Dec 13th, 2010 at 2:51am:
;D ;D |
Title: Re: Do we all have something in common? Post by Kevin_M on Dec 13th, 2010 at 7:47am Quote:
And I'm sure you can think of many other possible causes you might smugly say we can't prove wrong. Also can't disprove it's caused by aliens from a star system in the constellation Taurus. Perhaps someday you can prove it wrong. If your banquet of food for thought is pot luck, I brought a dish. |
Title: Re: Do we all have something in common? Post by Ginger S. on Dec 13th, 2010 at 4:53pm Kevin_M wrote on Dec 13th, 2010 at 7:47am:
[smiley=crackup.gif] [smiley=crackup.gif] [smiley=crackup.gif] [smiley=crackup.gif] Oh Kevin after the |
Title: Re: Do we all have something in common? Post by AussieBrian on Dec 13th, 2010 at 6:04pm wrote on Dec 13th, 2010 at 2:51am:
Now there's a thought for a calendar, all proceeds to ch.com. (I'll start by auctioning tickets to the change rooms.) |
Title: Re: Do we all have something in common? Post by thebbz on Dec 15th, 2010 at 1:43pm
I want one.!!(totally open ended and ambiguous) ;)
the bb |
Title: Re: Do we all have something in common? Post by vietvet2tours on Dec 15th, 2010 at 2:50pm wrote on Dec 15th, 2010 at 1:43pm:
I'll tell your wife. Potter |
Title: Re: Do we all have something in common? Post by Linda_Howell on Dec 15th, 2010 at 3:12pm Quote:
Now that there is hilarious. To me at least. ;D |
Title: Re: Do we all have something in common? Post by vietvet2tours on Dec 15th, 2010 at 3:21pm Linda_Howell wrote on Dec 15th, 2010 at 3:12pm:
I see you've met John. Potter |
Title: Re: Do we all have something in common? Post by thebbz on Dec 15th, 2010 at 3:22pm Quote:
Snitch! Just don't tell her where the fishin hole is. Ya I'm with ya Linda,LMAO |
Title: Re: Do we all have something in common? Post by Ginger S. on Dec 15th, 2010 at 5:13pm Potter wrote on Dec 15th, 2010 at 3:21pm:
I'm 5'3" if that makes me Tall ... How tall is she??? :P |
Title: Re: Do we all have something in common? Post by Jeannie on Dec 15th, 2010 at 5:13pm JustNotRight wrote on Dec 13th, 2010 at 6:36am:
Seems like I remember talk of a "Clusterbabes Calendar" once ;D |
Title: Re: Do we all have something in common? Post by Linda_Howell on Dec 15th, 2010 at 5:21pm
Actually I was referring to myself. I am 5 ft. tall when I'm stretching.
As far as the calendar...I did that a few years back to give to all the women at whatever convention we were at. It was "cluster hunks" though. DJ was Mr. July. ;D |
Title: Re: Do we all have something in common? Post by Ginger S. on Dec 15th, 2010 at 5:40pm
I wasn't refering to you Linda in my comment about how tall is she...I was refering to Julyn lol
I KNow I'm bad!!! Slap me sideways and send me to my corner. :D :D |
Title: Re: Do we all have something in common? Post by thebbz on Dec 15th, 2010 at 5:44pm
5ft. tall, that is stretching it. [smiley=2vrolijk_08.gif] [smiley=2vrolijk_08.gif]
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Title: Re: Do we all have something in common? Post by Brew on Dec 16th, 2010 at 3:30pm
I wouldn't be so sure that all these viewings are because of interest in the subject line alone....
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Title: Re: Do we all have something in common? Post by Jimi on Dec 16th, 2010 at 3:40pm Quote:
I don't remember what month I was, but I remember that sexy cheerleader outfit I was wearing. |
Title: Re: Do we all have something in common? Post by mikstudie on Dec 16th, 2010 at 4:50pm Brew wrote on Dec 16th, 2010 at 3:30pm:
Ditto!!!! Brew. I like surveys and I like talking headaches,but if iam going to talk about my head exploding iam gonna have fun while doing it. |
Title: Re: Do we all have something in common? Post by Ginger S. on Dec 16th, 2010 at 4:59pm julyn wrote on Dec 16th, 2010 at 2:10pm:
I have a notification set to this topic so every time there is a new posting I view it. Brew wrote on Dec 16th, 2010 at 3:30pm:
This is True! ;) |
Title: Re: Do we all have something in common? Post by deltadarlin on Dec 16th, 2010 at 7:30pm Jimi wrote on Dec 16th, 2010 at 3:40pm:
[smiley=clap2.gif] Still have it? |
Title: Re: Do we all have something in common? Post by jon019 on Dec 16th, 2010 at 8:29pm
Yup...."all the women are strong, all the men are good-looking, and all the children are above average."
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Title: Re: Do we all have something in common? Post by Brew on Dec 16th, 2010 at 9:23pm jon019 wrote on Dec 16th, 2010 at 8:29pm:
That was Lake Wobegon, MN, silly. |
Title: Re: Do we all have something in common? Post by Jimi on Dec 16th, 2010 at 9:26pm Quote:
No, but I think Donna D or Mel does because it pops up on here every now and then. |
Title: Re: Do we all have something in common? Post by jon019 on Dec 16th, 2010 at 9:50pm Brew wrote on Dec 16th, 2010 at 9:23pm:
Clusterville/Lake Wobegon...same same...Powder Milk biscuits anyone?...... |
Title: Re: Do we all have something in common? Post by thebbz on Dec 17th, 2010 at 9:02pm Quote:
All this other stuff is what I come here for. ;) That and CH sucks the bb |
Title: Re: Do we all have something in common? Post by lorac on Dec 17th, 2010 at 9:33pm
OMG.... YOu all make me laugh so hard!
Hey... wondering if we all need a HypothalimusEctomy. |
Title: Re: Do we all have something in common? Post by Ginger S. on Dec 17th, 2010 at 10:20pm lorac wrote on Dec 17th, 2010 at 9:33pm:
That would bring a whole new dimension to the |
Title: Re: Do we all have something in common? Post by mikstudie on Dec 18th, 2010 at 10:41am
You guys are killing me. ;D
Iam laughing so hard my HEAD HURTS. Oh wait it always does. ;D |
Title: Re: Do we all have something in common? Post by Dan Epps on Dec 19th, 2010 at 7:25pm
You guys are having WAY too much fun for a bunch of clusterheads!!!
In fact, it sounds like y'all are having even more fun than I did Friday night when I stayed up all night and played strip solitaire (I lost but you don't want me on any clusterhunks calendar :D ). I read somewhere it is better to have a bottle in front of me rather than a frontal lobotomy. ;) Of course whoever said that definitely wasn't a CHer. |
Title: Re: Do we all have something in common? Post by jon019 on Dec 19th, 2010 at 8:48pm Dan Epps wrote on Dec 19th, 2010 at 7:25pm:
When life deals you a pile of poop...ya got TWO choices....shovel or eat shit...I prefer to shovel....shovel...AND shovel... To have fun doing it..THAT'S a blessing...THAT'S ch.com... Be well brother, Best, Jon |
Title: Re: Do we all have something in common? Post by AussieBrian on Dec 20th, 2010 at 6:10pm jon019 wrote on Dec 19th, 2010 at 8:48pm:
That much poop, Jon, there's got to be a pony in there somewhere. |
Title: Re: Do we all have something in common? Post by Ginger S. on Dec 20th, 2010 at 7:24pm AussieBrian wrote on Dec 20th, 2010 at 6:10pm:
Or at least ONE HEFTY COW!! :P |
Title: Re: Do we all have something in common? Post by jon019 on Dec 20th, 2010 at 7:27pm AussieBrian wrote on Dec 20th, 2010 at 6:10pm:
More like a Clydesdale :o :o :o |
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