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Title: Worst CH description ever .... Post by badfly on Oct 2nd, 2003, 7:14am Just searching around the net tonight, I came across the stupidest attempt at giving info on CH in my life. Of course I sent them a very heated e-mail and urge you all to do the same. http://www.painforum.com/en/1/clusterheadache.html I was mostly freaked by this sentence ... "It is known to affect smokers and alcoholics in particular". ALCOHOLICS ?!?!? What the f#ck is that supposed to mean? |
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Title: Re: Worst CH description ever .... Post by badfly on Oct 2nd, 2003, 7:20am Damn! Just found another doozy. "The typical cluster headache sufferer is a man with rugged facial appearance and coarse-looking skin, although women and children also can get them. Many cluster patients are heavy smokers and drinkers. Quite often, the headaches occur at night." here is the link if you wanna blast em too. http://www.umich.edu/~urecord/9798/Sep10_97/cluster.htm I cant believe the rubbish that is out there. Some ppl will label anything huh. |
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Title: Re: Worst CH description ever .... Post by maggie_may on Oct 2nd, 2003, 7:29am That's insane to use that word .. alcoholics. If someone who was just diagnosed with CH and didn't really know much about it and read that site and alcohol was a trigger for them, I know I'd be offended that someone called me an alcoholic. Hell, I must be a closet smoker and alcoholic, b/c as far as I know, I don't do either one.. maggie |
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Title: Re: Worst CH description ever .... Post by RevDeFord on Oct 2nd, 2003, 7:44am I have always heare this and have never disputed it since I am a recovering alcoholic. It is interesting thought hat I had my first CH around 14 which is about 2 years before I really started drinking heavily. |
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Title: Re: Worst CH description ever .... Post by Hirvimaki on Oct 2nd, 2003, 8:15am WTF?!?! What a way to start a KIP 6 day... Since I neither drink nor smoke (and never have) and I doubt very much you could ever characterize me as having "rugged facial appearance and coarse-looking skin" (I'm a pretty-boy), I must be channeling these HAs from some craggy, alcoholic living under a bridge. While I'm certain there are smokers and alcoholics and men with rough skin who suffer from CH, you could say the same about any number of diseases. Now I must get back to writing this letter to the experts over at the painforum... I hope they don't mind the cigarette burns and tequila stains on it. |
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Title: Re: Worst CH description ever .... Post by Bob P on Oct 2nd, 2003, 9:09am Having been to 3 conventions I'd have to agree with the drinking and smoking. Fully 95% of the people at the conventions hit it hard. Look at the pics of the conventions and tell me if you see cigarettes and booze/beer. Almost every picture. I don't look at it from the point that the smokes and alcohol cause the clusters but rather from the point that the same brain malfunction that causes clusters also causes us to have addictive personalities. Anybody addicted to this MB? |
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Title: Re: Worst CH description ever .... Post by Hirvimaki on Oct 2nd, 2003, 9:19am I don't have an addictive personality. Now, I may be the only CHer in the entire world who does not smoke or drink or have addiction problems, but I doubt it. I would say rather that smoking and drinking are two ways people cope with pain (either emotional or physical). I'd say if you have CH, you have a lot of pain with which to cope. |
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Title: Re: Worst CH description ever .... Post by Elaine on Oct 2nd, 2003, 9:23am Bob has a point there. |
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Title: Re: Worst CH description ever .... Post by brain_cramps on Oct 2nd, 2003, 9:50am addictive personality? BAH! ;) while in rehab, i was almost tempted to ask if anyone woke up regularly in the middle of the nite, screaming... probably lots of them --- just for other reasons grant |
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Title: Re: Worst CH description ever .... Post by hopefull on Oct 2nd, 2003, 10:11am I don't drink or smoke.....so what gives!!! |
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Title: Re: Worst CH description ever .... Post by don on Oct 2nd, 2003, 11:51am I am unable to find any contact numbers for either of the above links. |
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Title: Re: Worst CH description ever .... Post by Bob P on Oct 2nd, 2003, 1:17pm Quote:
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Title: Re: Worst CH description ever .... Post by FrankF on Oct 2nd, 2003, 1:37pm I remember we have discussed another cluster site that says left handed people do not have CH. :P |
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Title: Re: Worst CH description ever .... Post by BarbaraD on Oct 2nd, 2003, 1:38pm Oh well, only a few years ago WOMEN didn't have them either -- And I voted AGAINST women's lib. Told 'em we didn't need Equal Rights --- should have just left it to the ruddy skinned alcoholic men...... Us women folks could have still been sitting around with our little "delicate" migraines.... Go figure!!!! Blast away guys -- those people deserve it.... I'll help ya'll out later after I get rid of my "delicate" little migraine...... LOL! Hugs BD |
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Title: Re: Worst CH description ever .... Post by BobG on Oct 2nd, 2003, 1:51pm Have to go along with Bob P on this addictive thing. The addiction doesn't have to be of the "sin" type, smoking, drinking, gambling. How many just "have to" complete the newspaper crossword puzzle every morning? Or "have to" read their horoscope? How many "must have" coffee first thing in the morning? Or "must have" a snack before bedtime? How many "just have to" check into this site every day? IMHO most clusterheads do have addictive personalities. |
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Title: Re: Worst CH description ever .... Post by Hirvimaki on Oct 2nd, 2003, 2:19pm I can only speak for myself, but, again, I do not have an addictive personality. I may be many things, but a person disposed to addiction (whether the sin-variety or otherwise) I am not. I guess I just don't have CH. Silly me. ;) |
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Title: Re: Worst CH description ever .... Post by Hirvimaki on Oct 2nd, 2003, 2:30pm Oh, I am, however, predisposed to sin in general. I'm just not addicted to it! |
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Title: Re: Worst CH description ever .... Post by firebrix on Oct 2nd, 2003, 2:47pm Sorry. Cannot agree with this addictive personalities thing. Mopar is not like this, and doesn't drink alcohol either. There are many on this site who do not fit that description. I know cos I've chatted and emailed with them and I've also recently met another CHer who is pretty far from these descriptions - a very cool guy indeed with no addictive personality evident. Maybe when there are over 5000 people on a site, some similarities occur between groups, but not all CHers use alcohol, smoke nor have addictive personalities. If we make comments like this we have to be careful that our methodology is not the same as the morons who wrote the above-mentioned webpages which I found quite insulting and told them so. I am aware that not everyone here will agree with the Kiwi brikki chikki from Down Under but this is just my 2c worth - for what its worth. flame away firebrix |
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Title: Re: Worst CH description ever .... Post by BobG on Oct 2nd, 2003, 2:54pm Hirvimaki....not all clusterheads have addictive personalities but I think most do. Glad you don't. Sorry you have clusters. Wish it were the other way around. Please enjoy you sins in general. ;D |
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Title: Re: Worst CH description ever .... Post by don on Oct 2nd, 2003, 3:03pm Quote:
Oh yeah? Can you go 1 week without accessing or thinking about this site? I am addicted to anything that makes me feel good. Took me weeks of recovery to stop sending hate mail to jonny. God i miss it! |
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Title: Re: Worst CH description ever .... Post by cathy on Oct 2nd, 2003, 3:04pm Well I DO have an addictive personality im addicted to this site, my hubby and the phone...oh and Yahoo.....but I don't have CH ....I smoke and drink, Wes doesn't drink but smokes....and definately doesn't have an addictive nature.....guess that throws the theory outta the window.... ;D btw...there are lots of alcoholics who dont live under bridges and they are good guys.... Cathy |
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Title: Re: Worst CH description ever .... Post by gmlevenhagen on Oct 2nd, 2003, 3:17pm Wait, wait , wait.... I am left handed and only smoke and drink on rare occations... does that mean I don't have CH ??? does that mean I have to give up my O2 and go back to being in pain :P LOL That sucks >:( Gena |
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Title: Re: Worst CH description ever .... Post by BobG on Oct 2nd, 2003, 3:29pm Gena, No you don't have to give up the O2. But you must learn to eat and throw right handed. ;D Glad you only smoke on rare occasions. You'll die much slower that way. ;) I smoke way too much. I'll be in the graveyard way before you are. :( |
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Title: Re: Worst CH description ever .... Post by badfly on Oct 2nd, 2003, 4:37pm HEY ! I am absolutly appalled at the lack of synergy in relation to this topic! I think that some of you are missing the point (big picture). Those sites were giving a discription of CH and labeling sufferers. Those are not facts they were presenting, but opinions, and BS opinions too. You cannot make BS sweeping statements like that on this board and you certainly cant do it on a so called medical info site either. Yes it is true that a large percentage of CHers smoke, but is that not true of many medical problems. What is the percentage of smokers amongst ppl with sinus infections. What is the percentage of smokers amongst ppl with cataracts? Actually it is a useless fact unless one wants to draw a connection. As far as I have seen on theis board over 4 years there IS NO connection between CH and smoking. BUT ALCOHOLISM! FOR F#CK SAKE ppl wake up!! ALCOHOLISM!!??? Where the @#$ does that come from. Stop being so keen to be argumentative and pay attention here. Do you think alcoholism can/should be related to CH or even written in the same sentence. There is no research or evidence to support that. In fact who ever wrote that description sucked it out of his thumb while looking for a phrase to finnish his sentence. I for one am FREAKED by some of your lack of concern and casual support of the smoking thing. The second site that states "man with rugged facial appearance and coarse-looking skin"is even worse BS then the first! What the hell kinda medical discription is that? Sounds to me like bigoted racist crap!! Does this mean blond blue eyed aryens are lesss likely to suffer CH? What about short smooth featured children of the sun. If those sites want to be informative, then that kinda suggestive and biased wording should be removed. It should be out for many many reason, and I for one am horrified at the blase attitude some have shown over this. Perhapse you think AIDS only affects Africans and homersexuals? Perhapse you think most CHers are alcoholics. *John stomps off in disgust cursing and shouting at lack of concern he sees around him ....* |
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Title: Re: Worst CH description ever .... Post by Hirvimaki on Oct 2nd, 2003, 5:07pm Badfly, I agree with you. I get rather disgusted with generalizations, especially when they are passed off as some sort of helpful fact. 95% of death-row inmates eat bread. OMG! We should all watch out for those bread-eaters because they have a proclivity to be murderers? Plaah! Generalizations aren't harmless. They breed misunderstanding and prejudice. If there was a viable, and trackable, group which held a higher risk for CH, I would be all for getting this information out there because it would be benficial. Hirvimaki |
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Title: Re: Worst CH description ever .... Post by BarbaraD on Oct 2nd, 2003, 5:14pm Ok, I was only joking --- I sent a NASTY e-mail to them also... I agree it was BUNK! and it made me mad also. Women and Migraines????? The JERKS!!!!! I suggest the rest of you do the same -- Go see what they're saying and give 'em your comments also.... BD |
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Title: Re: Worst CH description ever .... Post by Bob P on Oct 2nd, 2003, 5:20pm Yes, alcoholism and CH should be spoken of together. Homework assignment - research the connection of dopamine with Ch and dopamine in treating alcoholism. Report back and let us know if there is any connection. I'm an alcoholic, cigar smoker and I can't stop playing with my winky. I still curse my wife for sewing my pants pockets closed! |
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Title: Re: Worst CH description ever .... Post by Ueli on Oct 2nd, 2003, 6:32pm The worst part is that this guy and gal from the Michigan University want to recruit 50 "heavy smoking and drinking cluster headache sufferers with rugged facial appearance and coarse-looking skin" for a clinical sleep study that will "will point toward new and better treatment for people who suffer from the debilitating headaches". Shame on Ronald D. Chervin (assistant professor of neurology) and Sarah T. Nath (clinical neurophysiology fellow) for not doing their homework. BTW, did I already mention how much I trust those people who find a high correlation between CH and sleep disturbances? Ueli |
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Title: Re: Worst CH description ever .... Post by RevDeFord on Oct 2nd, 2003, 10:52pm What about Type A personalities? The type of person that is driven hard during the day by his own desire to succeed, only to get hit when he/she calms at the end of a stressful day. |
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Title: Re: Worst CH description ever .... Post by Callico_Kid on Oct 3rd, 2003, 1:19am I think they must have taken down the first board, cause when I filled in the comments on the feedback and tried to submit it I got an error message saying that it was an inactive address. Go figure. BTW, I never smoked or drank. Wanted to play professional baseball. Never did that either. :( jc |
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Title: Re: Worst CH description ever .... Post by gmlevenhagen on Oct 3rd, 2003, 8:25am SORRY!!! I was just haveing some fun ::) I was upset also and wrote them and told them so! It is because of missinformation that I did not get a correct DX for 12 years. :P Gena |
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