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Topic: Cluster Cure (Read 4792 times) |
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Ray
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Re: Cluster Cure
« Reply #1 on: Mar 23rd, 2008, 2:28am » |
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I haven't bought the book, but I doubt that it would contain a "cure". I don't have the money to burn to buy the book and find out.
I bet you'd find nearly all, or potentially more information within this forum!
Just my thoughts and I'm sticking to em.
Wishing you well,
Ray
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Qazpur
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Re: Cluster Cure
« Reply #2 on: Mar 23rd, 2008, 7:52am » |
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i believe that people who profit from the pain and misery of others by rehashing and packaging freely available information as a must-have cure should be hung, drawn and quartered...
but then that's just my humble opinion, by no means aimed at the publication mentioned as i won't be spending $47 to read it.
a couple of links to some of the information referred to on the home page of the site, after a quick search:
http://www.medicalnewstoday.com/articles/79557.php
(does make me a little concerned about my verapamil intake)
http://www.obgyn.net/newsrx/general_health-Cluster_Headache-20010108-3.a sp
(study from 2001 it seems)
at the top of his list of resources is, rather unsurprisingly, clusterheadaches.com 
i just notice a google ad at the bottom of this page for said "definitive guide". makes me feel like buying the e-book and plastering it anonymously all over the fucking internet. i feel another hit coming on....
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BarbaraD
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Re: Cluster Cure
« Reply #3 on: Mar 23rd, 2008, 8:10am » |
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NOTE TO NEWBIES:::: There is NO CURE at this time for CH. Occasionally we get people advertising cures, but these are just something to take your money - THEY DO NOT WORK.
After reading the ad for this book, I think I can safely say (as an oldtimer to this type of hype) this is another one of those "fake" cures...
If you've got $47 to blow, hit the paypal button at the bottom and send it to DJ to help keep this website running. Now that's what HELPS CH and all those of us who suffer....
Hugs BD
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chewy
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If I were new to CH and didn't have the time to search around years of CH.com then I'd buy it in a minute.
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outofcommission
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Re: Cluster Cure
« Reply #5 on: Mar 23rd, 2008, 12:02pm » |
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if there is a cure i'm sure one of us would figure it out, and i don't think any clusterhead would put a price on helping out another clusterhead. as far as information goes i have clusterheadaches.com.
johnny
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that which does not kill you will only make you crazy, obsessive, and sleep deprived
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chewy
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on Mar 23rd, 2008, 12:02pm, outofcommission wrote:if there is a cure i'm sure one of us would figure it out, and i don't think any clusterhead would put a price on helping out another clusterhead. as far as information goes i have clusterheadaches.com.
johnny |
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Then no medical practitioners who have CH. should be allowed to charge for their services?
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Charlotte
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Re: Cluster Cure
« Reply #7 on: Mar 23rd, 2008, 12:50pm » |
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I didn't get the internet until after I had joined this site at the library. (This site is why I got the internet at home.) I have a stack of papers printed at the library well over a foot high.
1-22-02, I bought, CLUSTER HEADACHES, treatment and relief for cluster, cluster migraine, and recurring eye-stab pain by Michael Goldstein with foreward by Seymour Diamond, MD. I had to wait for it to be ordered and it was a little bit worthless for actual help. From the title, I expected to find info on treatment and how to get relief, but I didn't really.
It had the internet address for this site, but I did not have the internet then. That was the best thing in the book. I think this site is the most valuable thing I've found so far.
The letter writer said we'd probably spend more that $47 on one prescription, and that may be be true, and I also know a (non-med) case of Red Bull is over $34 at Smart N Final and would not last a month.
It is all relative. The same information is probably available on this site, but if you don't already have a foot high stack of papers, and you are just getting your information together, it may be invaluable.
I think it could be summed up better:
1. Moral Support
2. Good Docs - if you have a bad one, fire him, he works for you
3. O2 - at least ask about it
4. Verapamil
5. Prenisone tapers
6. Kudzu, Red Bull, ice, and alternatives
7. Being a guinea pig, always trying something new or trying it again
8. Back to Moral Support, and you will get that here
Charlotte
p.s. I see I left out imitrex,etc., and probably more. But this would still be an ok start.
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| « Last Edit: Mar 23rd, 2008, 1:07pm by Charlotte » |
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mc_ashes
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Re: Cluster Cure
« Reply #8 on: Mar 23rd, 2008, 5:06pm » |
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Well said Charlotte, this site IS invaluable.
Mark
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Annette
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Re: Cluster Cure
« Reply #9 on: Mar 23rd, 2008, 5:30pm » |
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on Mar 23rd, 2008, 12:44pm, chewy wrote:
Then no medical practitioners who have CH. should be allowed to charge for their services?
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The difference here Chewy, is the medical practitioner will have to put his or her credential behind the work ie would be responsible for the information gathered and published. He or she would need to do work to verify the accuracy and authenticity of the information. The consumers would be covered by his or her insurance in case something goes wrong. The medical practitioner would also be available for follow up or to answer any question or concern.
This is not the case here.
I dont know who this person is, but it is very likely that the person wouldnt even have or live with someone who has CH. He would just search the internet and visit sites like ch.com gathering information and then simply compiling into the book.
I very much doubt that he would be able to fully understand or be able to substantiate any of the information with personal experience. I also doubt very much that he would be able to answer any question or concern.
Its unethical to sell for a profit information that you dont own.
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andrewjb
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Re: Cluster Cure
« Reply #10 on: Mar 23rd, 2008, 6:32pm » |
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on Mar 23rd, 2008, 5:06pm, mc_ashes wrote:Well said Charlotte, this site IS invaluable.
Mark |
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 . andrew.
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KatzPurr
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Re: Cluster Cure
« Reply #11 on: Mar 24th, 2008, 1:34pm » |
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Thank you all for your input. There is pretty much an e-book out there for any ailment or problem known to mankind and I doubt that any of them provide cures or are particularly helpful. I just wondered if anyone had purchased this ch information, especially since there is an ad for it on the bottom of the page.
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Linda_Howell
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Re: Cluster Cure
« Reply #12 on: Mar 24th, 2008, 7:41pm » |
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There's THAT word again.
Cure.
insults our collective intelligence. 
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thebbz
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Re: Cluster Cure
« Reply #13 on: Mar 24th, 2008, 10:39pm » |
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I think he's a headache pimp.. 
thebb
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Qazpur
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Re: Cluster Cure
« Reply #14 on: Mar 25th, 2008, 6:43am » |
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on Mar 24th, 2008, 1:34pm, KatzPurr wrote:| Thank you all for your input. There is pretty much an e-book out there for any ailment or problem known to mankind and I doubt that any of them provide cures or are particularly helpful. I just wondered if anyone had purchased this ch information, especially since there is an ad for it on the bottom of the page. |
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indeed it's a little unfortunate that this is the only ad to appear at the bottom of every page on this site - it has to do with relevance of keywords on google ads rather than the choosing of the webmaster but it does give the impression that the product is endorsed by ch.com (which I sincerely hope isn't the case).
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Brew
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Re: Cluster Cure
« Reply #15 on: Mar 25th, 2008, 7:23am » |
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Katzpurr and Qazpur?
I think you're the same person, and I think you're here to attempt to promote that sham of a book, i.e., there's no such thing as bad publicity - only publicity.
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Qazpur
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Re: Cluster Cure
« Reply #16 on: Mar 25th, 2008, 7:58am » |
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on Mar 25th, 2008, 7:23am, brewcrew wrote:Katzpurr and Qazpur?
I think you're the same person, and I think you're here to attempt to promote that sham of a book, i.e., there's no such thing as bad publicity - only publicity. |
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lol, i have to admit the names are rather remarkably similar, i considered mentioning it myself, though can i assure you it is merely coincidental.
i do however take offence at your suggestion that i might be promoting something which i strongly believe to be a large pile of horse manure.
i fail to see the logic in your "bad publicity" remark - are you going to rush out and buy something after a numerous people have justified perfectly why you shouldn't??
i'd like to believe that folks on this board have a little more common sense than you give them credit for...
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Brew
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Re: Cluster Cure
« Reply #17 on: Mar 25th, 2008, 8:00am » |
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My, oh my.
Methinks the lady doth protest too much.
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Annette
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Re: Cluster Cure
« Reply #18 on: Mar 25th, 2008, 8:09am » |
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on Mar 25th, 2008, 7:58am, Qazpur wrote:
i'd like to believe that folks on this board have a little more common sense than you give them credit for...
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Its not lack of common sense but lack of experience. Thats why we need to exert caution at all times and warn people of possible fraudulent claims.
When people are in bad pain and desperate for a cure, common sense may go out the window.
This does happen
on Mar 23rd, 2008, 8:56am, chewy wrote:| If I were new to CH and didn't have the time to search around years of CH.com then I'd buy it in a minute. |
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Qazpur
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Re: Cluster Cure
« Reply #19 on: Mar 25th, 2008, 8:26am » |
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on Mar 25th, 2008, 8:09am, Annette wrote:
Its not lack of common sense but lack of experience. Thats why we need to exert caution at all times and warn people of possible fraudulent claims.
When people are in bad pain and desperate for a cure, common sense may go out the window.
This does happen
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i'm afraid stupidity and not inexperience would cause people to go and buy something that others with experience tell them not to.
why don't we do the inexperienced folks a favor and ask DJ to remove the google ads from this site - i shudder to think the damage it has done.
brewcrew, your misquote from Hamlet i'll take as an apology for an unfounded accusation.
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LeLimey
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Re: Cluster Cure
« Reply #20 on: Mar 25th, 2008, 9:16am » |
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Hi Qazpur I just thought I'd say hello since my brother lives and works in Rotterdam. I see you're in Amsterdam though. There are several other Dutch ch'ers, maybe you could all get together sometime. If I'm able to go to visit my brother at the same time I'll join you!
Helen
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Brew
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Re: Cluster Cure
« Reply #21 on: Mar 25th, 2008, 9:50am » |
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on Mar 25th, 2008, 8:26am, Qazpur wrote:| brewcrew, your misquote from Hamlet i'll take as an apology for an unfounded accusation. |
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You are correct in one sense - the line is actually "The lady doth protest too much, methinks."
But no, there is no apology there.
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Qazpur
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Re: Cluster Cure
« Reply #22 on: Mar 25th, 2008, 9:50am » |
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Hi there Helen, Rotterdam's not too far away (of course not nearly as nice as Amsterdam  ).
Gatherings are always fun - maybe if we can stop complaining about the weather long enough this side we can organize something. You are of course more than welcome to come and say hi whatever the occassion may be.
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BMoneeTheMoneeMan
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Re: Cluster Cure
« Reply #23 on: Mar 25th, 2008, 11:54am » |
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Who farted?
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"Fool me once, shame on, shame on you. Fool - can't get fooled again"
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Linda_Howell
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Re: Cluster Cure
« Reply #24 on: Mar 25th, 2008, 12:45pm » |
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Quote:
i'm afraid stupidity and not inexperience would cause people to go and buy something that others with experience tell them not to.
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WRONG. Desperation and inexperience will many many times cause other-wise intelligent people to do this. Mostly desperation though.
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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