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Topic: why do i feel alone on this sight? (Read 673 times) |
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brian_m
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lots of uus simply have the same symptons and i believe ch might juust be a sympton for a variety of reasons eg. barometric pressuure/climate/allergies to mold etc/ neck prob/ tuumor(the only person i knew with ch before i fouund this sight died of a brain tuumouur 3yrs ago)/dehydration(or youur body is given signal that its dehydrated)/ depression any other ailment or disorder that you can imagine can poss.bring on ch. am i wrong? im glad im not alone buut ive been reading this sight for abouut 20hrs and everybody seems to point to the quuick/easy way ouut this makes me suuspiciouus of this sights intentions and i might have to leave if i cant find anyone on this sight that is more focuussed on a cuure. why are some(most) of us even mentioning druugs when non of uus including specialists even know whats really wrong with ouuurselves let alone each other?
please dont reply to this if youu are going to tell me abouut ouur pain or if youu want me to try druuugs.
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LeLimey
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Re: why do i feel alone on this sight?
« Reply #1 on: Sep 9th, 2005, 5:08pm » |
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Brian, with the best intentions in the world your posts are a little confusing and hard to read. I'm aware English isn't your first language and I appreciate your difficulties on that score however I do admit I'm confused.
The reason I am here is to talk about it with others, we have fun too but mainly we support each other and talk about the meds we use and what we do to get some relief.
IF I am reading you correctly you don't want to talk about CH or try meds. (If I'm wrong please correct me) I don't know what you want from us, what is it we can do to help YOU? What did YOU come to this site looking for? If we can understand that much from each other we can move forward!
I hope you get some relief soon
Regards
Helen
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broomhilda
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Re: why do i feel alone on this sight?
« Reply #2 on: Sep 9th, 2005, 6:12pm » |
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Brian, first off welcome to the site and sorry you had to find us. I have to agree with Helen, not quite sure what you are looking for here, your posts have been somewhat confusing.
You have metioned hydration, if you look at the links to the left <<<< there are tips on water, it has been discussed and utilized by many of us. In terms of a cause, well again read, read, read there have been polls and then some on if we have commonalities ie. allergies, sinus problems, teeth problems, head injuries and on and on, so far the only thing we seem to have in common is a damaged hypothalamus.
In terms of a cure, well once again read, read read there are many threads around on medications and natural ways of successfully helping us cope with ch. If you want to find others to communicate as well about researching for a cure, visit our OUCH sites, all of them are working hard to support in finding a cure.
Once again welcome and pf wishes to you, if you would like as well to locate some folks whom suffer with ch and speak french feel free to drop in on the Canadian side and post.
I hope the information helps, good luck!
edit for sp's
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| « Last Edit: Sep 9th, 2005, 6:14pm by broomhilda » |
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Suck it up Princess...
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Sean_C
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Re: why do i feel alone on this sight?
« Reply #3 on: Sep 9th, 2005, 6:15pm » |
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on Sep 9th, 2005, 5:08pm, LeLimey wrote:| I'm aware English isn't your first language |
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His english is fine, I think he studders thats all.
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Ree
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Re: why do i feel alone on this sight?
« Reply #4 on: Sep 9th, 2005, 6:25pm » |
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BRIAN..... there isn't a cure. It seems to me that you are recently diagnosed and you still need to get some information. Well this is the place, but there isn't a cure for CH..... there isnt a cure for headache of any type for that matter.CH is a reoccurring event. Whether you have it or not is up to a Neurologist....
For the past 5+ years that I have been here... patiently waiting for a cure too... there have been many people that might find some medications to ease the pain. We don't alllll encourage medication or the abuse of medications.... We first encourage CH sufferers to try Oxygen.
When you ended your post you said "dont reply to this if youu are going to tell me abouut ouur pain or if youu want me to try druuugs." I am confused too... you are not alone..... this is a support board for Cluster headache it is OUR pain and the part about drugs I just don't understand.... the actual "cure" for this ailment may be a medication some day.... can't imagine that they will come up with something to take that will stop the reoccuring nightmare..... hope you feel better.....
waiting for a cure with you... Ree
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nani
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Re: why do i feel alone on this sight?
« Reply #5 on: Sep 9th, 2005, 6:42pm » |
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Brian, I hope you find what you need here. I must ask, why are you suspicious of this site's intentions?
We are sufferers and supporters who share information. We share what works (yes, meds are some of the things that can help) what doesn't ( there are a lot of those posts) and how we cope.
pain free wishes, nani
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Jonny
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Re: why do i feel alone on this sight?
« Reply #6 on: Sep 9th, 2005, 6:49pm » |
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on Sep 9th, 2005, 6:15pm, Sean_C wrote:
His english is fine, I think he studders thats all.
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With his fingers?
Hes " suuspiciouus of this sights intentions"
What a putz!!!
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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BobG
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Re: why do i feel alone on this sight?
« Reply #7 on: Sep 9th, 2005, 7:04pm » |
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Seee that button on thee leeft sidee of your screeen the says water x 3? It has beeen theeree for about 5 yeears. Wee aree veery weell awaree of the wateer treeatmeent. It works for somee and doees not work for otheers. If you wish to ree-inveent thee wheeel pleease bee my gueest. Go drown yourseelf.
About the talk of using drugs…..wee preefeer the teerm meedication, meedicinee, meeds. Drugs to us is reefeerring to hard narcotics. Wee alreeady know that narcotics aree of no valuee against Clusteer heeadachees.
And you misspeelleed ‘ouuurselves’. The word only has 2 u’s.
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floridian
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Re: why do i feel alone on this sight?
« Reply #8 on: Sep 9th, 2005, 7:38pm » |
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This site isn't about encouraging or discouraging drugs - people want something that will help them have less pain in their life. For many people, that may mean using preventives or abortive meds. There are also tons of non-pharmaceutical things for episodics that get an once-a-year cycle of a few weeks. Plenty of those types that visit here and they never use what they call the stronger stuff.
Taking medicines can have side effects. Deciding not to treat a condition can also have side effects. Make your own choice - its your body, its your pain.
CH is complex - the fact that alcohol or heat or dehydration can make clusters worse does not mean that they cause them, but knowing that they interact can help reduce the pain. In most cases, CH is not a symptom of a tumor - it can happen, but that is less than 1%. Lots of people have clusters for years and years, and it doesn't kill them. On the other hand, if a person is getting hit really bad, it can lead to depression and suicide, and when a person gets pushed that direction, both the pain and the depression need to be treated.
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Kevin_M
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Re: why do i feel alone on this sight?
« Reply #9 on: Sep 9th, 2005, 7:50pm » |
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on Sep 9th, 2005, 4:56pm, brian_m wrote:lots of uus simply have the same symptons and i believe ch might juust be a sympton for a variety of reasons eg. barometric pressuure/climate/allergies to mold etc/ neck prob/ tuumor dehydration depression any other ailment or disorder that you can imagine can poss.bring on ch. am i wrong? Yes
im glad im not alone buut ive been reading this sight for abouut 20hrs and everybody seems to point to the quuick/easy way ouut this makes me suuspiciouus of this sights intentions and i might have to leave if i cant find anyone on this sight that is more focuussed on a cuure. Some have suffered up to 30 years, that's a quick, easy way out?
why are some(most) of us even mentioning druugs when non of uus including specialists even know whats really wrong with ouuurselves let alone each other? To live life, despite.
please dont reply to this if youu are going to tell me abouut ouur pain or if youu want me to try druuugs. Ok. |
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In a broad sweeping statement that this site and those here are suspect means you do not understand the nature of CH or what we've done here and seen just what has been accomplished.
The cut and thrust of denouncing all by your lone asymetrical aspect of observed conduct without acknowledging the experimenting and support that has resulting in the conclusions drawn on this site, you've spoken without attempting to pursue this cure. In the meantime, read more, as every printed word about ch, study or reported research finding is kindly brought to this site from all possible sources, for you, as well as the best possible knowledge and support from all parts of the world from those who suffer and support. We cope, learn and find.
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| « Last Edit: Sep 9th, 2005, 7:55pm by Kevin_M » |
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BMoneeTheMoneeMan
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Re: why do i feel alone on this sight?
« Reply #10 on: Sep 9th, 2005, 8:07pm » |
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Brian, I agree with you in that i dont like just to simply pop pills or shoot up just so the pain goes away. I dont like drugs, (unless they are fun) but this affliction FORCED me to take any drugs that are reccommended.
Like someone said, try O2 and water....see if that helps you. Then, if you have an aversion to chemical drugs, try things like the LSA or the psilocybin, at least they should not be processed like traditional drugs are. If you do both of those steps and you get no relief, you have to ask yourself a question "can i live with this affliction, or should i take drugs for it?"
If you can live with this affliction, i would say you probably dont have CH, probably some other sort of headache.
With regard to a cure, most of the other people have a better knowledge base about the medical terminology......they can better answer.
I will tell you one thing: you dont have to question the 'sights' intentions. The people here only want to help.
PF wishes to you
BMonee
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E-Double
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Re: why do i feel alone on this sight?
« Reply #11 on: Sep 9th, 2005, 8:14pm » |
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Ease up fella!
I am sure that something got lost in translation.
Everyone here is about helping eachother on ouor respective journeys.
Years of doing battle, unimaginable pain, welcoming death at certain points and for some a completely non functional life have been turned around by the knowledge that we are not alone.
Lives are turned around not necessarily because of drugs but the power of knowledge.
Knowing that there is NO cure as of yet but methods by which people can live full lives despite agony for some many times of the day....everyday.
That's what this site is about.
Maybe that's what you have missed.
Good luck on your journey but do not drive yourself crazy thinking that you will find a cure.
Learn to live!!
E
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BMoneeTheMoneeMan
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Re: why do i feel alone on this sight?
« Reply #12 on: Sep 9th, 2005, 8:16pm » |
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Amen, brother.
That should be like a freakin mission statement.
BMonee
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Think of how stupid the average person is, and then realize half the population is stupider than that.
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Chillrmn1
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Re: why do i feel alone on this sight?
« Reply #13 on: Sep 9th, 2005, 10:48pm » |
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AGREED!
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LeLimey
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Re: why do i feel alone on this sight?
« Reply #14 on: Sep 10th, 2005, 6:00am » |
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Eric that is a wonderful statement of this site.
love you lots bro and I'm proud to know you
(HUGS)
Helen X
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kayarr
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Re: why do i feel alone on this sight?
« Reply #15 on: Sep 10th, 2005, 8:36am » |
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on Sep 9th, 2005, 8:14pm, E-Double wrote:Ease up fella!
I am sure that something got lost in translation.
Everyone here is about helping eachother on ouor respective journeys.
Years of doing battle, unimaginable pain, welcoming death at certain points and for some a completely non functional life have been turned around by the knowledge that we are not alone.
Lives are turned around not necessarily because of drugs but the power of knowledge.
Knowing that there is NO cure as of yet but methods by which people can live full lives despite agony for some many times of the day....everyday.
That's what this site is about.
Maybe that's what you have missed.
Good luck on your journey but do not drive yourself crazy thinking that you will find a cure.
Learn to live!!
E |
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That is exactly the point of being mentally healthy in the face of such agony. Standing up and screaming I WILL LIVE!
Just last night we were talking about it's almost easier to know there is not cure. He said he knows he has to deal with it. And so he does and very well I might add.
Brian_m I am sorry you have CH. I understand your mad quest for relief, a cure some way to understand why........Sometimes there is no why. It just is........
Hang out for a while. There are some really nice , funny , intelligent , compassionate people here who just happen to have CH too.
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Nothing is impossible! Just believe!!!!!
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Out0fTheMist
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Re: why do i feel alone on this sight?
« Reply #16 on: Sep 10th, 2005, 3:55pm » |
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Hi Brian,
As the wife of a CH sufferer and the mother of a child that suffers CH, I feel for you.
My understanding is there is no cure, maybe new treatments that work for some and not others. What I can tell you is, you are not alone. This is a great site for learning and sharing. That is why everyone is here, they are drawn together by common pain and symptons.
I know what it is like to feel alone fighting CH, the depression and the pain itself. I have watched both loved ones go thru exactly what you are going thru.
Maybe one thing that will help you utilize this site is this, here you have found a sounding board. A place where others suffer just like you. You can be angry and mad at the world or you can join others in a serious discussion of sharing what you feel.
The sharing of your feelings sometimes will help more than you realize. Although only a small part of the world are CH sufferers, here you can find someone willing to listen, offer support and even offer advice as to what is working for them in new technologies and medicines.
Good luck Brian,
Ruth 
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brian_m
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Re: why do i feel alone on this sight?
« Reply #17 on: Sep 10th, 2005, 5:21pm » |
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sorrry . some of you are beauutifuul people "thank" i shouuld have wrote"some members make me suspiciouus".
thanks to the guuy who linked me to the racist sight have confirmed that suspicion.
I was exhauusted and discouuraged when i wrote my original message(that lovely time of the year)
thanks for pointing me in the right direction.
seee you at "where are the polls and suurveys"
sorrry if i irratated youur damaged hypothalamuuses (especially with the sticky key board.)
seriouusly thouugh, my wife and child are calling me so i have to go back and live life .
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Sean_C
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Re: why do i feel alone on this sight?
« Reply #18 on: Sep 10th, 2005, 5:44pm » |
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on Sep 10th, 2005, 5:21pm, brian_m wrote: i shouuld have wrote"some members make me suspiciouus".
thanks to the guuy who linked me to the racist sight have confirmed that suspicion. |
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All the years I have been here and no-one has EVER done that to me, take your trash bag somewheres else you fucking troll.
Fuckin loser 
Sean.....................................
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brian_m
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Re: why do i feel alone on this sight?
« Reply #19 on: Sep 10th, 2005, 8:50pm » |
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thanks to everyone who gave me links pointing to relative information. also thanks to the people who gave me threatening gestures, i hope you can find the support you need at home with-out spending too much time chatting ."I do have a loving family that does support me and needs my suupport(giving begins at home) so please dont come after me as i am walking away"
thank god i never had the inclination to be a compuuter chatter,( could be more dangerouus than ch or the DRUGS/ medacation.)
I will keep reading my new links and i will ask my doctor abouut the oxygen .(not suure if its a illegal DRUG or medication in Canada yet)
good luck to the americans who sufffer from the disaster. there is a place in my home or cottage to help a family to get back on youur feet. (illegal or not)
p.s Bob G. if i was to sit here and read 5yrs of everyones chatting just to catch up to you, my wife and kid would leave and than i would "drown myself". you changed this experience from vertual to real when I saw youu with youur grandchild. I think i can relate to youur other link when i say"giving begins at home"
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Sean_C
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Re: why do i feel alone on this sight?
« Reply #20 on: Sep 10th, 2005, 9:34pm » |
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Don't let the door hit you on the way out
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bnfreeman
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Re: why do i feel alone on this sight?
« Reply #21 on: Sep 10th, 2005, 9:39pm » |
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I have a feelin that he won't be back. Good Luck anyways and sorry we didn't have the cure you were looking for.
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don
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Re: why do i feel alone on this sight?
« Reply #22 on: Sep 11th, 2005, 11:11am » |
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Quote:| why do i feel alone on this sight? |
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Hope your feelings are accurate. Dont want to many of you around.
Quote:| please dont reply to this if youu are going to tell me abouut ouur pain or if youu want me to try druuugs. |
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The type of druuugs you need aren't discussed here anyway.
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| « Last Edit: Sep 11th, 2005, 11:12am by don » |
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seasonalboomer
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Re: why do i feel alone on this sight?
« Reply #23 on: Sep 12th, 2005, 8:17am » |
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on Sep 10th, 2005, 8:50pm, brian_m wrote: thanks to everyone who gave me links pointing to relative information. also thanks to the people who gave me threatening gestures, i hope you can find the support you need at home with-out spending too much time chatting ."I do have a loving family that does support me and needs my suupport(giving begins at home) so please dont come after me as i am walking away"
thank god i never had the inclination to be a compuuter chatter,( could be more dangerouus than ch or the DRUGS/ medacation.)
I will keep reading my new links and i will ask my doctor abouut the oxygen .(not suure if its a illegal DRUG or medication in Canada yet)
good luck to the americans who sufffer from the disaster. there is a place in my home or cottage to help a family to get back on youur feet. (illegal or not)
p.s Bob G. if i was to sit here and read 5yrs of everyones chatting just to catch up to you, my wife and kid would leave and than i would "drown myself". you changed this experience from vertual to real when I saw youu with youur grandchild. I think i can relate to youur other link when i say"giving begins at home"
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Can't figure out this guy's story. Start's out as "member" then changes to guest. First post is actually cogent, then falls into babbling on about how we're out to make him take drugs he's not interested in. All initial feeback is pretty supportive then freaks out about how he doesn't want to hear about any "drugs", that he instead wants to hold out for a real cure.
Brian M. can you explain the erratic behavior? To be honest, you don't sound all that stable. To arrive here and start bangin' on people, people that have a lot of knowledge and years of experience is kind of rude.
Scott
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Kiwiinoz58
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Re: why do i feel alone on this sight?
« Reply #24 on: Sep 12th, 2005, 6:10pm » |
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Eric e-dub, your statement is perfect! and Sean you said it for me.
This so called French brian m is a dickhead. First he types like he's not familiar with English but take a good look at his last couple of posts, he uses language like an expert.
I for one am glad he's gone. We don't need people like him here!
Cheers,
Jacqs
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We are here for a good time not a long time. Time then to think outside the square and to give and get the best possibles of love and life.
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