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Title: Profiles Post by DougJ on Jan 3rd, 2007, 7:22pm Hi All, I've been a sufferer for about 7 years now. I've been to this website many times before. However, I never did register. About 3 years ago, I went to a neurologist who assured me he knew about cluster headaches. After the usual questions about the intensity, location, frequency, and duration of the pain I was experiencing, he said to me, "I want to make a few statements about you, and you tell me if they are true or false. Q: You're a smoker, right? A: True Q: Your wife/ girlfriend is a petite woman? A: True Q: You're a Republican? A: True Q: You have an unusual job/occupation? A: True" There were a few other questions he asked me (I can't remember them all now) and the answer to all of them was "True". After the questioning was over, I asked him, "What does this have to do with my headaches?" To which he responded, "You fit the classic profile of a cluster headache sufferer." This was news to me. I had had the headaches for a few years at this point and had done some research on the subject. But, I had never heard of anything like this before. He went on to tell me that the average sufferers were large framed males with prodominate noses. They usually work in some field that most people wouldn't even think of doing. He didn't tell me what the profile was for female sufferers was, but, it shocked me that he could so accurately tell me about myself. My question to anyone and everyone here is, Is there any way (in order to better understand this -as I like to put it- "Nightmare Gone Wrong") we could try to find out more specific corrilations between one sufferer and another? Any help would be appreciated. Doug |
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Title: Re: Profiles Post by georgej on Jan 3rd, 2007, 7:47pm on 01/03/07 at 19:22:07, DougJ wrote:
There have been profiles before--used to be, we were all male, smokers, heavy drinkers, with "leonine" features and "orange-peel" skin and hazel eyes. Not throwing rocks at your neuro, but I don't think I buy it. The only common characteristic I've seen among the people here is that they have weird stuff going on in their heads. on 01/03/07 at 19:22:07, DougJ wrote:
There are some notable exceptions here. [smiley=laugh.gif] Warm welcome, and best wishes, George |
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Title: Re: Profiles Post by Jonny on Jan 3rd, 2007, 7:55pm Ill throw rocks....your neuro is a complete fucking idiot and a narrow minded fuck face!!! He knows nothing about CH if thats what hes asking! Now, which reply suits you, Doug....mine or Georges? |
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Title: Re: Profiles Post by DougJ on Jan 3rd, 2007, 8:07pm Thanks George, I had been in "remission" for 2+ years. Then, just before Christmas, I came down with a bad ear infection. (probably due to sanding on some flood damaged furniture -Hurricane Katrina aftermath) I got an earache then later that night, about 2:30AM and there was the DEMON again. It seems to be a bit different this go round. I usually have the typical CH taking about 15 minutes to ramp-up followed by 45 minutes of a 6,000 degree railroad spike being oscellated through my temple, behind my eye, and into the left sinus cavity, then a 15 minute cool down period. NO, this time it's different. I wake at 1:15AM to 4 hours of that searing pain, followed by 4 hours of cool down. Then, a residual headache in my temple alone for the rest of the day. As if the headaches aren't bad enough, now I have to go through the day with 3 hours sleep. I'm literally DRAINED and EXHAUSTED before my day even starts. Methylprednisolone worked in the past but not this time. I've tried the O2 to no avail (Both my mother and current girlfriend are Respiratory Therapists, so, I know I did that right) Imatrex may be an option but, last time I checked, that stuff's VERY expensive. Don't know what else to say. Except "Thanks" to everyone here for being support. Doug BTW---I have no clue if my neurologist was spot-on or a quack. There is no claim here as to how good a doctor he is. But, he did peg me. |
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Title: Re: Profiles Post by thebbz on Jan 3rd, 2007, 8:12pm [smiley=laugh.gif] [smiley=laugh.gif] Jonny you kill me bro. [smiley=laugh.gif] [smiley=laugh.gif] I like yours -vs- goergej jb You rock as well Goerge |
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Title: Re: Profiles Post by BobG on Jan 3rd, 2007, 9:40pm Yeah, what Jonny said. |
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Title: Re: Profiles Post by georgej on Jan 4th, 2007, 1:35am If you're getting hit at night, you might consider melatonin. I nearly always get hit at night as well. The usual dose is 6 to 12 mg. taken 1/2 hour before going to bed. There's some anecdotal evidence here that taking 50 mg. benedryl along with it may augment the effect. If it doesn't work right away, give it a chance--say a week or two. There are quite a few of us who benefit from it--it's significantly reduced the number of nighttime hits that I get. Start out with the smaller dose and work your way up. A lot of it may depend on your size and body weight. I take 9 mg. Best wishes, George |
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Title: Re: Profiles Post by chewy on Jan 4th, 2007, 10:06pm Q. Your neuro is a total jack off. A. True |
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Title: Re: Profiles Post by Sandy_C on Jan 5th, 2007, 10:54am Hi Doug. I'll be the token female responder to this thread. Outside of question #1 about smoking (which seems a reasonable question), the rest are just plan bogus. What the Hell does the size of your wife or girlfriend have to do with CH? Your political affiliation - Oh Pleeeeze. Unusual occupation? Then how does he explain all of the rest of us schmucks who have everyday mundane jobs? If you would, please ask him to provide you with the source of his "classic profile of a cluster headache sufferer". I want to see what he has to say about women! Oughta be hilarious. Sandy |
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Title: Re: Profiles Post by DougJ on Jan 8th, 2007, 9:42am Look, To all of those out there who think my Neurologist is an idiot, and to those who think that his questions were a bunch of mumbo-jumbo. As I stated before, I am not here to attest to the validity of his questions or weather or not there was anything in his questions that ACTUALLY have anything to do whith Cluster Headaches. My question here is, "Is there a common link between us all?" Sometimes there are things out there that on the surface, seem to have nothing to do with the current situation (whatever that situation may be). However, when you get far enough away, and you start looking at things from a different perspective you can see the connection. If I have an odd job and I have CH and you have a mondane job and you have CH then I guess that's not the connection. Head trauma prior to getting CH, smoking, prodominate noses, WHATEVER. I don't know what the answer is. All I'm saying is that there has to be a connection. I don't know what that connection is, and maybe my Neuro doesn't either. But that doesn't mean that there isn't something out there that is causing all of us to suffer through this shit. If there is a "tie that binds" what better place to find it? Looking at this site and seeing how many of us there are here, hell, what is it, over 5000 of us registered? Where else on Earth are you going to find that many CH sufferers together? Suppose, just suppose here for a moment that sugar is the culprate or nylon or I don't know rice. You pick something. Suppose it's something that none of us on his/her own could find or pick out by themselves. Wouldn't it be great if together we could find what it is and cut that substance, activity, thought, whatever the hell it is out of our lives and go back to living normal existances? I don't know about you guys. But, I would do ANYTHING to never have to scream into a pillow while crying, rocking back and forth, and begging God to either kill me or take away the pain. I think that those of you who bothered to respond to my post missed the point of the post to begin with. Maybe I should have been a bit more clear as to what I was trying to find out. Whatever the case, hopefully this will lead someone or all of us to "think outside the box" and, maybe, finally figure out what the hell causes this shit! Doug |
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Title: Re: Profiles Post by nani on Jan 8th, 2007, 9:52am on 01/08/07 at 09:42:34, DougJ wrote:
The tie that binds us all is a screwed up hypothalamus. |
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Title: Re: Profiles Post by seasonalboomer on Jan 8th, 2007, 10:02am Doug, Do you think that you are the first person to have posed the question, "I wonder if there is something we all have in common?" Do you think the rest of us have not spent time "out of the box" on this subject? Do you think that we're just a bunch of idiot sufferers who congregate in the dark in front of our computers waiting on someone like you to shock us out of our dazed anticipation of a CH-messiah? You're talking to a community of people who are here because we think out of the box. We have chosen to find other voices than idiot neurologists (like yours) to base our hope and success managing cluster headache. So read up. You'll find more "out of the box" approaches to CH than anywhere else in the world. Pain free wishes to you. Scott |
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Title: Re: Profiles Post by peacestock on Jan 8th, 2007, 12:35pm I have to say that I think some of you are being pretty tough on 'ol Dougie. I am sure everyone here has spent time trying to figure out the correlation between the headaches and some other bizarre trait we all have in common. It brings comfort to people to find reasons or patterns to things. It's frightening when we are faced with the realization that this is all just random and there is no grand reason for anything. I personally find comfort it knowing that the reason for my clusters are that the size of my brain is ever growing due to my gigantic intellect and the pain is in fact my skull trying to make room. Some day I will be so smart! Too bad my hats won't fit me much longer. Peacestock |
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Title: Re: Profiles Post by Sandy_C on Jan 8th, 2007, 1:28pm on 01/08/07 at 12:35:55, peacestock wrote:
Very good, Peace. I really do like your reasoning behind why we have CH. Gave me a much needed chuckle today. Advice, just stop wearing hats. I feel I need to offer an apology to Doug, though. My previous post was pretty much blasting the comments his neuro made about the classic profile. I did not address Doug's question with regard to specific correlations between CH sufferers. There have been hundreds of questions posted over the years on these boards looking for similarities, correlations, why some and not others, how many have this, how many have that. No difinitive answers have ever come forth, other than a "broken hypothalmus", which did not come from members of these boards, but by reputable, noted physicians. No real reason has been found, no real similarities have been found, and no cure has been found, all by highly noted physicians around the world. So, to Doug. I apologize for not addressing your primary question. I'm sorry, though, I cannot apologize for questioning your neuro's classic symptoms. Sandy |
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Title: Re: Profiles Post by DougJ on Jan 8th, 2007, 3:21pm Peace, You are absolutely right! I think you have found the tie that binds! I too suffer from Cranius Maximus. (Obviously, I have Cluster Headaches.) I guess we can't all have our cake and eat it too. As far as the neurologist that figures it has something to do with a broken hypothalimus, does anyone know how this doctor came to his conclusion? BTW- I have not had any headaches for the past 2 days. I tried a RedBull last night about 12:00am, 10 minutes before I went to bed. The night before that I took 2 prednisone tablets about 5:00pm. Both preventive measures seem to have worked well. Until this cycle, I hadn't had a CH since my divorce 2 years ago. DAMN! I can't blame my ex-wife for my headaches anymore. -------Had heartburn again recently after about the same amount of remission time. I guess I can't blame that on her anymore either. Doug |
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Title: Re: Profiles Post by Salvelinus on Jan 8th, 2007, 9:29pm I've heard the "leonine features" & "ruddy complexion" bit, but never what type of job or the size of your girlfriend stuff. That is strange . . . I have to admit I've always wondered if there was something to the connection between the physical features and the CH. Specifically (if there actually is a connection), whether one is the result of the other. It isn't too much of a stretch for me to link physical traits to a physical illness. I always thought that the smoking was more of a treatment than anything . . . Anyway, Doug, about the Methylpredisolone, I've had varying results from it as well. What has seemed to work very well for me is Predisone. It doesn't come in a pack and you have to be careful about paying attention to ramping the dose, but man does it ever do the job. |
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Title: Re: Profiles Post by Woobie on Jan 9th, 2007, 5:41am and HI and welcome and all that [smiley=laugh.gif] edited cuz i was mean........not to anyone here - just to "doctors and researchers".... ;;D |
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Title: Re: Profiles Post by chewy on Jan 9th, 2007, 7:30am Research Questions: Q: Your wife/ girlfriend is a petite woman? A: True Q: You're a Republican? A: True Q: You have an unusual job/occupation? A: True" Conclusions: George Dubya is a clusterhead. |
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Title: Re: Profiles Post by DougJ on Jan 11th, 2007, 11:05am I've been doing quite a bit more research over the past few days. I've learned a lot about LSD and "shrooms" and how they effect the hypothalimus. Interestingly, tho, I learned about the role of the hypothalimus itself. WOW! It seems as though the hypothalimus is the "brain of the brain." It controls things such as: body tempeture, thirst, hunger, metabolism, testicles, ovaries, the production and secretion of hormones and all the other basic functions of life itself. I have heard it refered to as (to put it into computer terms) the DOS of the brain. In other words we couldn't even "BOOT-UP" without the hypothalimus. Now, keep in mind, this is purely speculation and theory, but, couldn't it be possible that if this all important part of the brain is responsible for so many things, and it gets screwed up isn't it reasonable to think that it may be possible that it would have certain effects and show itself by either physical, emotional, or life choice traits in most if not all with the same disorder? I believe that there are some things in life that we are in complete control over. There are also things that no matter what degree of influence we might inflict, we will have NO impact. This much I know; we (i.e. human beings) fear fate which is completely out of our hands. We like to believe that we "choose" who or what we become. We like to believe that we are in control of our own lives and we choose our mates and we choose our political affiliation and we choose what profession we enter. Maybe we do and maybe we don't. However, I challange each and every one of you. Look back on your lives. Think about the things that have lead you to where you are in life right now. Some of it was circumstance. Some of it was luck. Some of it was your upbringing. And some of it was outside influences. Most of it was YOU. The "You" that was you from birth. As far as the profiles of CH sufferers are concerned, I think it is possible. Not fact. Not absolute. Not congruent with all of us, but most of us. Your friend and fellow sufferer in pain, Doug P.S. No, I haven't had any shrooms or LSD--------YET! |
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Title: Re: Profiles Post by seasonalboomer on Jan 11th, 2007, 11:28am Yes, the hypothalamus is an amazing thing. Inasmuch as CH sufferers get up each day, require food and water for the body to work, have other needs on Maslow's Heirarchy, and sleep, I think barking up the psych profile route is an utter waste of time. Sure, it's fun and entertaining when you read something about another sufferer and say to yourself, "GET OUT, that's just like me!!!" But, in the end, we are almost indiscernible from the general public in our wide range of interests, political affiliations, spouse selections, sexual orientations, personality traits and so on.... But, the hypothalamus is an amazing thing. And, the physical effects of our dodgy hypothalamus can be often be seen in other aspects of our body's behavior. Scott |
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Title: Re: Profiles Post by georgej on Jan 11th, 2007, 11:56am on 01/11/07 at 11:05:49, DougJ wrote:
Doug, I am willing to concede that it's possible. But then again, almost anything is "possible". Speculation is fine if it leads somewhere--sometimes it does--but it's ultimately unhelpful if it can't be supported by observable fact, or even anecdotal evidence. There have been hundreds of threads here (take a good long look if you wish) that have attempted to discover common physical, psychological, neurological, immunological, even astrological characteristics that might distinguish us as a population. I, for one, have not seen anything that is powerfully convincing here (where there is probably more discussion and more poll-taking among clusterheads than anywhere else in the world), nor am I aware of any convincing scientific evidence showing common ground. Physically, psychologically, and in other ways we are all over the map. Yes, external physical characteristics and psychological characteristics may be linked to certain physical disorders, but I'm not at all certain that CH is one of them. Anecdotal physical characteristics that were allegedly linked to CH have done actual harm in the past. We might laugh at the "leonine" features, "orange-peel skin", and hard-drinking male profile that STILL circulates among the medical community, but this profile was used as an aspect of diagnosis by many doctors. As such, it led to widespread misdiagnosis of males who did not fit the "profile", and near-universal misdiagnosis of women. That caused to a lot of unnecessary suffering and led to a lot of inappropriate treatment. I think you'll find that's why profiling sticks in a lot of peoples' craws. Again, I don't have a problem with speculation, but I'd like to see something to back it up. I don't think your neuro has anything to back it up. If he has citations that he can point to, I'd be more than happy to see them. Sorry this is so long, but I wanted to be as clear as I could. Best wishes, George |
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Title: Re: Profiles Post by Margi on Jan 11th, 2007, 11:57am Doug, welcome. I don't think the posters were attacking YOU at all - just the ignorant doctor syndrome that we see here ad nauseum. Although, I must admit the petite girlfriend is a new one. Wonder how he words that question for his female cluster patients. ::) I've been here in this community since 1998. And married to a clusterhead since 1989. The ONLY commonality I can say conclusively that you folks have is.....you have cluster headaches and a dodgy hippothingamajiggy. I can tell you what commonalities you DON'T have though: You're not all hazel-eyed, left handed, tall, men, smokers, drinkers, type A personalities, previously head-injured, ruddy complected, caucasian, left- OR right- wing activists, Christian, Jewish, Muslim, Buddhist, Atheist......need I go on? |
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Title: Re: Profiles Post by DougJ on Jan 11th, 2007, 1:17pm If, in fact, there are traits and commonalities between us, wheather or not they fit the current medical field's "classic profile", why should they be dismissed as hocus-pocus mumbo-jumbo witch doctor methods? If there are similarities, why not try to find out what they are and use them to help diagnose those of us with CH? I am not saying that EVERYONE has the same outward signs. But, if there are physical and/or mental charictaristics that are present and doctors are aware of, then maybe there won't be so many of us who are misdiagnosed. As far as the "classic profile" of females who have CH, maybe there are traits there too and they're undiscovered as of yet. I DON"T KNOW! As I have stated before. This is a theory. And, in my opinion, one that shouldn't be dismissed. Doug |
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Title: Re: Profiles Post by georgej on Jan 11th, 2007, 1:44pm on 01/11/07 at 13:17:59, DougJ wrote:
Evidence, evidence, evidence. Even a little would be nice. on 01/11/07 at 13:17:59, DougJ wrote:
We haven't been asleep here--common characteristics have been cussed, discussed, dissected, reflected, objected, and rejected, over and over again. Again, setting up yet another "profile" of typical persons with CH without convincing evidence that that profile is factual and accurate serves no purpose, and can be actively harmful. It has been harmful in the past. on 01/11/07 at 13:17:59, DougJ wrote:
Where's the evidence, Doug? None of us has ever heard of some of these "characteristics" your neuro came up with before. Until some shred of evidence is presented, it's not a theory--not even a SWAG--it's simple speculation, and not at all convincing. Lacking evidence, even anecdotal evidence, there's no alternative but to dismiss it. Where's the beef? Hope your cycle resolves itself quickly. Best wishes, George |
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Title: Re: Profiles Post by seasonalboomer on Jan 11th, 2007, 2:28pm I don't want to be a victim of cluster headache profiling........ >:( |
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Title: Re: Profiles Post by DougJ on Jan 11th, 2007, 2:54pm For all wanting evidence, I don't guess we'll ever have any so long as no one wants to investigate it any further than....."well that doesn't sound like me," or "I'm nothing like that." There may be corrilations. These corrilations may help doctors identify CH sufferers. Maybe the answer is that more MDs need to be aware that there is a condition known as Cluster Headaches. What the symptoms are and how to deal with them. Maybe profiling is irrelivant. Maybe I have been conditioned to believe that human beings need to be put into groups and need to be classified. It doesn't matter. I have learned that the best way to resolve a problem or fix something that is broken is to first understand all there is to know about it. If there is a corrilation, if nothing else, then it gives the doctors more information. Which, in my humble opinion, will do nothing other than help to ultimately find a cure. Doug |
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Title: Re: Profiles Post by seasonalboomer on Jan 11th, 2007, 3:19pm ....now doug, don't go all "victim-ey" on us. All I'm saying is that the subject has been done to death around here. I'm not saying you can't do it. Go ahead. Ask what type of bottled water everyone drinks and build all kinds of behavioral models, if that's what you find entertaining. The major correlations are going to happen in the labs of Dr. Goadsby and others who are doing the work necessary to delve into the science of this thing. Not polls about favorite colors or heighth's of our spouse. Just as you have the right to look for what you call profiles, I have the same right to say "bollocks" at the results. Scott |
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Title: Re: Profiles Post by Margi on Jan 11th, 2007, 3:32pm on 01/11/07 at 14:54:13, DougJ wrote:
pssst....honey, we've been here since 1998 doing just that. Honest we have. Lots of us every single day. We've taken polls, we've met each other in person, I believe some have even shown each other their belly button lint. There are almost 9 years of history here. Lots of profiling attempts have already been made. THAT's the point, Doug - we haven't yet been able to come up with one standard profile for a clusterhead. Other than you have a different hypothalmus from birth and nitroglycerine is a trigger whether in or out of cycle - and it's the ONLY trigger out of cycle. Alcohol is a trigger for most - but not all - while in cycle. Chronics don't seem to fall into this category though. That's just ONE of the many conclusions we've reached here. And there are more. Take a walk through the archives sometime - very valuable stuff in there! Seriously, Doug - we honestly have been talking about this stuff for a weally weally long time. :) |
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Title: Re: Profiles Post by peacestock on Jan 11th, 2007, 3:32pm But the most important question we should all be asking is "Can I get a government grant to ask people what their favourite colour is and HOW MUCH?". You may be on to something here, Scott. We'll just waste time and money doing this type of research, but, hey, think of all the fun we will have doing it. Peacestock |
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Title: Re: Profiles Post by froggy on Jan 11th, 2007, 10:34pm you go girl. keepin' it light. |
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Title: Re: Profiles Post by chewy on Jan 12th, 2007, 6:05am Now I have to dump my fat girlfriend and switch parties. Quote:
Period. Exclamation mark. End of story |
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Title: Re: Profiles Post by pubgirl on Jan 12th, 2007, 7:16am and just to remind people that the old profiling said that most sufferers were men! Ooooopppssss I forgot! :-X All together now...... Sing it out in one voice ;;D Women don't get clusters!!!!!! W (sorry Doug, not taking the piss. It is an old theory that some men here LOVE to perpetuate :-*) |
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Title: Re: Profiles Post by DougJ on Jan 12th, 2007, 11:32am I'd love to sign up for the grant! I think I should do the study. Exclusively with women. What do you figure I could get a few hundred thou? I know women get CH. I think it's wrong to say that only white, republican men, with prodominate noses, have petite gf's, and so on. Maybe I'll come up with a questioneer and post it. Just for shits and giggles. If it doesn't accomplish anything.....then it doesn't. If it does then maybe we'll all have something more to go on. Obviously this is something a lot of people have thought about and they have strong opinions on the subject. Otherwise this wouldn't be such a hot topic. If I do the questioneer and post it, would anyone here have any objections to filling it out? I am not the most computer literate person around. So, if there is anyone out there who could re-format it in such a way as to keep it anonimous and have some results posted as well (like the medication survey to the left). You never know.....maybe we'll learn something and maybe we won't. Doug BTW- I know no one here is picking on me. I appreciate the feedback and the objections. I know that no one here wishes to suffer. And I know that everyone here would do ANYTHING to get rid of the pain. Believe it or not, I even like the smart ass remarks. They make me laugh espically during these hard to manage days. It's nice to have some kind of balance. I need to laugh when I can to balance the crying when in pain. |
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Title: Re: Profiles Post by Sandy_C on Jan 12th, 2007, 12:14pm Yes, Doug. If you feel that you need to post a questionnaire in an attempt to find some correlation between CH sufferers, I will fill out your questionnaire. But, before you post it, please read through the archives on this site, not just the current boards, but go back in to the archives (6th button up from the bottom on your left). Over the years, there have been hundreds of posts from different people looking for that correlation. We have all submitted answers to surveys such as the obvious (sex, age, height, weight, drink, smoke, head injury, etc.). We have also responded to month of birth, day of birth, born in leap year, position of birth (1st, 2nd, 3rd, etc child), foods eaten or not, triggers (besides alcohol, which seems to be a major trigger for most), seasonal cycles, length of cycles, start dates, end dates, and even astrological signs, and, yes Doug, occupations. I can't honestly say that I remember ever hearing about any surveys of CH sufferers dealing with political affiliation, or size of partner. We are not picking on you, Doug, but we want you to understand that, as CH sufferers, we are not just sitting here on our butts, crying about our pain, and commiserating with each other about our woeful life existence. We ARE and have been researching all ideas, asking questions, sharing information, and doing the same things that you want to do now. Again, Post a questionnaire and I will be happy to answer it. But, before you post, please research on this site the questions that have already been asked, and try to come up with some new questions, new theorys, new thoughts. (Search the www and read up on what research the medical community is working on). We've all be doing this for a number of years (some, for decades), and we are all open to new ideas, new thoughts, new theorys, but we have a tendancy to ignore those that have been repeated over and over again. Sandy |
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Title: Re: Profiles Post by DougJ on Jan 13th, 2007, 11:33am Thanks Sandy. As I have stated before, in my original post, I am NO stranger to this website. I have been coming here for years. I have only recently decided to join up and start posting. I am one of the fortunate ones who was accurately diagnosed the very first time I went into the ER wondering why my head was about to explode. The ER doctor recognized the symptoms. That was 7 years ago. And I have been keeping track since then. (off and on) I have, and do check the archives. Thanks for the advice. Doug |
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