Fellow seekers: If you are looking for a central source of unbiased CH research, this may be the GOLD standard:

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Wiley seems to publish articles from many, if not all, of the Scientific Journals in our field, ranging from Annals of Neurology, Journal of Head and Face Pain, down to some rather obscure publications. It is searchable, you can order results by date and it is current to the month. It is a paid service for full reports, but most articles have their abstracts, which are viewed for free and sometimes give you what you need. From there, you can buy the pdf on line, or reference it and hit on your local library for an inter-library loan. Mind numbing range of material, from Kudzo and Melatonin,  or reference to a new bibliography of hallucinogenic research with 10,000 cites, to peer reviewed reports on bioethics of CH drugs and procedures, papers on the efficacy of virtually every drug we talk about, or the latest papers on ipsilateral electrode stimulation of the Hypothalamus.

Too many of our threads are laced with anecdotal arguments and the he said/she said stuff. Even the CH.Com science page's latest science is largely dated back to the 1980's. I've seen Wiley articles referenced on a few posts going back, but if you haven't searched the whole site, you are missing something special.

Here we can reference current science, basically the same day it comes into the hands of our providers, even to print it off and put it in into their hands.

The anecdotal and personal accounts will always be core to this site, even more so now that we can buttress them with some pretty powerful science. Hope you guys enjoy this site as much as I have.

Knowledge is Power!

Chris

Would there be any way to get a "CH.com" subscription so we can all read the full articles?  just a thought...

Sure, just click the paypal button on the bottom of the page. Pony up for CH.com

Quote:

Too many of our threads are laced with anecdotal arguments and the he said/she said stuff.

Yes that is bound to happen and creates good discussion. It also promotes self study. Thanks for the link. Opinions will vary.
the bb

Anyone feeling magnanimous out there? Maybe Google?

The abstracts at Wiley cover much of what we want to know, I've found some pdf's will just open up, who knows why, also if you Google on keywords and phrases extracted from the abstracts, a lot of times you can find some more info or discussion on the paper or topic for free. A good number of the papers published are a bit weak, limited databases, and especially with drug therapies, things are usually blind alleys, as the concept of bioethics and double blind/placebo tests on CH patients has finally caught up with medical science, thank God!

Mass subscriptions are sort of aimed at libraries, should be $7-800 for access to the databases we want. I don't know if that would give us individual access, of if we could ask an administrator to retrieve them and then have them post it. Someone higher than I would have to ask.

Individual articles are about $20-30, it is a simple sign up, and they take credit cards.

A bit of a hit, but less than a single Zomig or Relpax pill, and if you are looking at a specific therapy, it may be the wisest investment you could ever make.

Another source for books and articles, is

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Type in cluster Headache in the title, then if you don't find things, type it in the keyword field, or search by author. You can also type for individual issues of these Journals. There are many more hundreds of hits thus, books and articles starting at a dollar + shppg. Seems a bunch of what gets quoted on the threads is available dirt cheap.

And no, I have no financial interests in any of this stuff.

Hopefully Helpfully,


Chris

Quote:

should be $7-800 for access to the databases we want. I don't know if that would give us individual access, of if we could ask an administrator to retrieve them and then have them post it.

THAT doesn't sound free to me at all.


I'm with John. hit the paypal button at the bottom of every page here.

All the info that has been gleaned here in the last 10 years and posted here in links as well asw on OUCH is FREE!!!!!!!!!!!!


Many many people here have contributed their acquired intelligence to put together all this info.   For FREE!!!!!!

The OUCH website link is to the left of here.   It is where Peter Goadsby has said he would add his support to us.  It is where we can expect to have a convention from,  every single year.   I could go on....... ;)

Well hey, I AM a college student....and my man IS a college professor...I'll check and see what kind of stuff we have access to through our library!  :)

Linda,

The Wiley site has free access to abstracts, which are easy obtainable.

Many libraries will have the journals, or be able to get them through inter library loans, which will again get them to you for free.

Radar has figured this out, awaiting her trip to her library, Godspeed!

There are other options available that will cost, but the no cost side has been a fascinating study, and used as I have suggested with further searching it can be a central gateway to a lot of new knowledge.

Critiquing it because is also has a paid service attached, is a bit like criticizing a man who gives you a hundred dollar bill, because he doesn't give you a five hundred dollar bill.

If anyone has a better site to stay up on current or archived CH research, it would be a kind thing to do to share it with the readers here.

Anyway, not the end all, be all,
just another resource that might help a few people, humbly offered as such.

Who says I don't take criticism well? (everyone, but that's not the point....)

OK, one more site, which offers free abstracts and free full articles, this one funded by the Nat'l Inst of Health, your tax dollars working for you:

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Pickings are a bit slimmer than Wiley, but I'll point you to the (publ Jul 2008) study on CH, by Lerous and Ducros. It is current, up through genetics in CH and Electrical Stimulation of the Hypothalamus, and lush with a 101 citation bibliography, some of which are obtainable FREE in full versions.

Should any administrators be lurking, I might suggest it as an update or adjunct for the CH.Com medical information page which is good, but a bit outdated, last reference cited is from 1987. The article is open, unrestricted use, with proper attribution.

Again, sorry if my title for this thread was a bit disingenuous, but there is a lot of good science out there, i hope at least a few of you are finding this thread of interest.

Chris

fly gas wrote on Dec 20^th, 2008 at 8:13am:

Linda, The Wiley site has free access to abstracts, which are easy obtainable. Many libraries will have the journals, or be able to get them through inter library loans, which will again get them to you for free. Radar has figured this out, awaiting her trip to her library, Godspeed! There are other options available that will cost, but the no cost side has been a fascinating study, and used as I have suggested with further searching it can be a central gateway to a lot of new knowledge. Critiquing it because is also has a paid service attached, is a bit like criticizing a man who gives you a hundred dollar bill, because he doesn't give you a five hundred dollar bill. If anyone has a better site to stay up on current or archived CH research, it would be a kind thing to do to share it with the readers here. Anyway, not the end all, be all, just another resource that might help a few people, humbly offered as such.

Ain't no five hundred dollar bill.

          Kinder gentler Potter

If it helps,
better than a five hundred dollar bill.

Kinder, Gentler Chris

Links to information have been posted here for years. That's what we do.
Thanks for yours.
You seem unpleased with the information here.

Quote:

If anyone has a better site to stay up on current or archived CH research, it would be a kind thing to do to share it with the readers here.

I have a bunch , however I dont make a deal out of posting them.
all the best
the bb ;)

Nah, I'm the $100 type, like the site, like the information, thank you guys.

Did a search of all msgs on ch.com, only found 6 posts where the word wiley came up, only as a link to a single article.

If having a link to a rich supply of continuously updated cluster research sounds like a big deal, Great! It certainly is a big deal to me, but I've been doing the cluster thing from waaay before the internet was created.

CH.com actively solicits ideas from members, check the about or feedback links to the left. Reading the medical info page, I certainly like the compact information. I did note that the latest research noted was from 1987. Call me crazy, but I actually think augmenting this page with research from 20 years later, covering numerous drugs and procedures that weren't around back then is a good and positive idea.
That's not saying I'm unpleased with the site, it's saying I like the site, and here's an idea that some administrator might look at that could help the site a little bit.

Big difference.

The home page says:

"This site is devoted completely and exclusively to those that suffer from, and to the supporters of those who suffer from Cluster Headaches!

There are a few other sites out there dealing with Cluster Headaches, but no real place to "interact" with other Cluster sufferers.  There are a few message boards where you can read posts dealing with Cluster Headaches, but sorting through all the migraine, tension, and other headache posts to find the few about Clusters is enough to bring on a headache!"

I believe the site lives up to that objective. And OUCH site goes a little deeper into medical research, which makes the two sites very complementary.

Scott

Chris
I get the Lancet and Pain (and it is very costly), most of the abstracts of the research done in the world can be obtained over the net for free! If one would like to get more, most of the public libraries have a possibility to excess further information, I wonder if you think we all have not figured out that the wheel was invented….. or that we are un aware of the vest possibilities over the net, one can post ideas all over, at any time, if you feel you would like to have excess to more articles over the net and have them posted, just do it, it would be very nice, and useful for all, but to pop up with how to spend money of others, oh well….  as some told you on the bottom of the page there is a button called pay pal….. make a good use of it….

Chris I am on pain meds. and my patience is very limited, do me a big favour before you post, do go over the post, and give it a second thought! its not about how much and how often you post, its about what and how you post, unless you feel the urge to just post for posting…..


Michael

fly gas wrote on Dec 20^th, 2008 at 10:19pm:

but I've been doing the cluster thing from waaay before the internet was created.

  Since before Sept.18, 1969. Thats a long time to have to suffer from CH. I 've had them since May of 69. I wish it had made me a stronger, wiser person. When it comes to the condition. But that doesn't seem to have been the case with me either.
  Best of luck getting your ideas/knowledge out there and accepted. You really suck at it now.
[smiley=smokin.gif]

BWAHAHAHAAA!!!!  Oh jeez, I hope this thread doesn't go sour, 'cuz I needed a good laugh...I am assuming you guys are just having a good-hearted jab at each other!!

But CRAP! our library is closed for the holidays....so I'll have to wait til Jan. 5th to look into it; but I get access to all kinds of special online art gallery schwag, so I'm sure I can get medical info too.

fly gas wrote on Dec 20^th, 2008 at 10:19pm:

Nah, I'm the $100 type, like the site, like the information.

Quote:

Mass subscriptions are sort of aimed at libraries, should be $7-800 for access to the databases WE want.

Quote:

Anyone feeling magnanimous out there?

Quote:

Knowledge is Power!

So what you are saying Chris, that it’s OK for us to drop $7-800 for info to post here for you to read but you are only willing to drop $100 for you own enlightenment!?!

I’m not playing that game…
And just where do you get this WE $hit from???

The wiser sharper Rolo. ::)

Edit to add: All the latest and greatest info out there floats across this board and if you’re too busy to take the time to find it Chris, than all ya have to do is ask. You sir, never seem to ask any questions at all. You simply state facts and hypotheses of you own doing.

I get the impression that you are here to serve your own purposes. Get a proper mask for your O2, and go on a prevent.

And show some personality, that would really help… Hit that Pay-Pal button and drop your $100 where it really counts? Bet ya that never happens!

fly gas wrote on Dec 20^th, 2008 at 10:19pm:

Did a search of all msgs on ch.com, only found 6 posts where the word wiley came up, only as a link to a single article. Reading the medical info page, I certainly like the compact information. I did note that the latest research noted was from 1987. Call me crazy, but I actually think augmenting this page with research from 20 years later, covering numerous drugs and procedures that weren't around back then is a good and positive idea.

Chris, thanks for posting the link. I'm sure it has lot's of info in it for CH.

You may have found few Wiley articles, but there have been many links and abstracts posted here on the Meds board, and the Cluster Headache Specific board from other sources, all very good reading, and very informative.

When having to pay for an article, one thing to consider is the fact that these articles are copyrighted, and cannot be posted without permission.

You can search here for a specific treatment, I'm sure there has been a link posted that relates to it.

The OUCH website has a wealth of articles about CH treatment that have been posted there with permission. Check it out.

You are right, the medical info page probably needs to be updated. While the info for the meds listed there is still true, there are many others that we use now that weren't used then.



Quote:

I wonder if you think we all have not figured out that the wheel was invented….. or that we are un aware of the vest possibilities over the net, one can post ideas all over

Michael, you are right, there is a lot of info available on the internet regarding CH. Most of the newbies who come here are looking for answers, and you know that CH.com has the latest info on medicine, and treatments for cluster headaches. I think (I'm just guessing here and not trying to speak for anyone) the reason most links and articles are posted are for new people who don't know what to do, or what to tell their doctors. They are told to print off the articles to take to their docs, or to read an abstract for their own information. I don't think anyone is trying to re-invent the wheel. If no one posted links to the articles they found, we'd be with less information.
Hope you are healing up well from your surgery, and I hope you are ale to control your CH well, with the stimulator.

Edited to add:  Chris, hit the paypal button at the bottom of the page. You'll help to support the site, and it has benefits.

Yeah, I do like the banter, crusty ole cluster types, letting the chips fall where they may, CH Grunts, as it were.

I know SOME of the Wiley material is scattered around these posts, some not. As I wrote, I did search this site before posting. I know the purpose of having many of the current studies and results available in one compact, chronologically sorted place is escaping a few, for those who have figgered it out, new sufferers or whomever, it is a nice resource, compliments what we already have on this site.

BTW, for those who read with one blind eye, the other covered, I am NOT advocating ANYONE spending ONE RED CENT. Someone questioned the costs involved with Wiley,  and I just tried to explain the site, and then give better explanation on how to access the information for free. The NIH site I mentioned is taxpayer supported, it is free, no paypal needed, all articles are available in full, and the information can be used for dissemination as long as proper attribution protocols are followed. I have a bit of background in Copyright Law, would be glad to help if asked.

On another note, can anyone explain the finances of this site? DJ Johnson, the founder of CH.com, seems pretty adamant on turning down donations on the "about the site" page, and I've sort of assumed the google ads and direct advertising paid the freight, but am I wrong?
A few of you seem to infer that if one does not hit the paypal button, one is unworthy to post, share or think.

Still, I've never gotten a free ride, or asked for one in this life. Is the site in need of money? If so, any guidance on a proper donation? I'm wide open to supporting a good cause, and this is one of the Goddamn best.

Also, as I'm asking, is DJ still around on the site? I know he was going through hell with Moyamoya, just hope he's doing OK, wouldn't mind wishing him a Merry Christmas and giving him a nod of respect for starting this site in the first place. Air Force always did get the smart guys.

Wishing you ALL a PF Christmas,

Chris

fly gas wrote on Dec 23^rd, 2008 at 9:27am:

"A few of you seem to infer that if one does not hit the paypal button, one is unworthy to post, share or think." Not unworthy to post....just not pee in the pool "Is the site in need of money? If so, any guidance on a proper donation? donations help defray the costs - and the paypal button is the only way. "Also, as I'm asking, is DJ still around on the site?" yes, you can email him on the "feedback" button

The going rate for those with 75 posts or more is $1,000.

And yes, DJ is here everyday. He knows when you are sleeping, he knows when your awake, he knows if you've been bad or good.etc...etc...etc.

Just so we all know (I know that some do know it) there is a very comprehensive and effective website on the net
with Information and data base dedicated to CH only! It is in German, and it is by one of our own “virtual family member”
Friedrich (cluster) called ck-wissen (the link:  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE )
just Google the info on it …. into English it is very simple, or just take German class…. It is most likely the most comprehensive data base I know of on the net that is dedicated to CH……with ample links to old studies and current studies, as well as publications! I dont think we need another tool we just need to use the ones we have better....



Michael

For certain an interesting site, even after living in Germany for two years, I have to translate it, used Babelfish.

Some very interesting information, some parts will grow, neurology link has only ten sites, some pages are quite good.

Probably great for continental CH people, as a lot of contacts are regional, but translating sites through an interpretation site is always fun, if I may clip from one of the pages:

"May readers and readers themselves an opinion to the individual descriptions form."

Guess that's all I could wish from any site or posting.

Best,

Yoda

Quote:

A few of you seem to infer that if one does not hit the paypal button, one is unworthy to post, share or think.

What a way to win friends and influence people. Nobody said or inferred that at all.
Careful about interpretations without all of the facts. It is obvious you dont know much about this place or the people here.
all the best
CH grunt :-?
the bb

I add a link in English (Googled) to ck-wissen, I think it should work....

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Michael

fly gas wrote on Dec 23^rd, 2008 at 12:57pm:

Best, Yoda

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Not ready for the burden, yup too old for the training are you!!!

Rolo… :D

fly gas wrote on Dec 23^rd, 2008 at 9:27am:

Yeah, I do like the banter, crusty ole cluster types, letting the chips fall where they may, CH Grunts, as it were. I am slightly offended by the GRUNT statement, are these the people you are looking for to wallow in your fodder? I know SOME of the Wiley material is scattered around these posts, some not. As I wrote, I did search this site before posting. I know the purpose of having many of the current studies and results available in one compact, chronologically sorted place is escaping a few, for those who have figgered it out, new sufferers or whomever, it is a nice resource, compliments what we already have on this site. Gee, did you ever think to ask for something you could not find before implying the info here is inherently disorganized? BTW, for those who read with one blind eye, the other covered, I am NOT advocating ANYONE spending ONE RED CENT. Someone questioned the costs involved with Wiley,  and I just tried to explain the site, and then give better explanation on how to access the information for free. The NIH site I mentioned is taxpayer supported, it is free, no paypal needed, all articles are available in full, and the information can be used for dissemination as long as proper attribution protocols are followed. I have a bit of background in Copyright Law, would be glad to help if asked. Your background in Copyright Law must have come from the defendants side of the court room… On another note, can anyone explain the finances of this site? DJ Johnson, the founder of CH.com, seems pretty adamant on turning down donations on the "about the site" page, and I've sort of assumed the google ads and direct advertising paid the freight, but am I wrong? A few of you seem to infer that if one does not hit the paypal button, one is unworthy to post, share or think. Don’t belittle us pal! You took the time to figure it out, now you are being snide about it! Still, I've never gotten a free ride, or asked for one in this life. Is the site in need of money? If so, any guidance on a proper donation? I'm wide open to supporting a good cause, and this is one of the Goddamn best. Than do what you feel is right, not because you are making it seem like you are being forced to do it, but because you have a heart and believe it’s worth your contribution. Or not, I don't really care. Also, as I'm asking, is DJ still around on the site? I know he was going through hell with Moyamoya, just hope he's doing OK, wouldn't mind wishing him a Merry Christmas and giving him a nod of respect for starting this site in the first place. Air Force always did get the smart guys. I have personally seen you logged in when Deej and Steph were logged in and I know that you’re not colorblind. They light up red in the logged on area at the bottom of the board, just above where the Pay-Pal donate button is. Wishing you ALL a PF Christmas, Thank you! Chris Dumas

Happy Holidays to you also Chris.

Roland.

Are you guys done?  

Melissa wrote on Dec 24^th, 2008 at 10:19am:

Are you guys done?

Mel,

let the intellect, the human interpretational and reinterpretation skills develop, and soar to higher levels.....

but then, I just ignore (time and aging) my wife’s advice...
“Why don’t you just go on with the real problems, with the real challenges
and the real needy, and simply ignore the obscure and the ones that seek help but don’t want it, or
not interested in the help extended…….”

Michael

Michael, and once again, you are reminded just how smart your wife is, right? ;)

;D


in all seriousness, this thread is becoming more about personal digging than information...

Yeah Melissa, pretty much done.

I'd sure rather chat about CH sites, rather than muse on these bizarre personal attacks, like spending CH.com money, (someone else's idea), having ulterior motives (sharing a neat site, what ulterior motives could I possibly have?), or chatting on someone's urinary tract obsessions.

With regards to the couple who have nothing better to do than follow me around and post muddled little clip art slurs, I am reminded of rule one I was taught in an old college class, Dealing with Idiots 101:

Don't.

Meanwhile, yesterday was a charm. I got Insurance approval to quadruple my Relpax prescription, 28X/mo., have 4 fresh tanks and 2 new rebreather masks, and a bottle of Kudzu that would choke a horse, which is a first, THANKS to the person who posted that thread. I'll post whatever results I have with the Kudzu on the Kudzu thread, let Bummer and Bolofrantic have at it.

Life is pretty darn OK.

Quote:

I am reminded of rule one I was taught in an old college class, Dealing with Idiots 101:

Yep your a scholar.
the bb

wrote on Dec 24^th, 2008 at 1:29pm:

Quote: I am reminded of rule one I was taught in an old college class, Dealing with Idiots 101: Yep your a scholar. the bb

LOL!
 I have found a cure thanks to flygas,  I will be giving this away soon.  I am calling it Super Fly-gas it comes in a zip lock bag it is odorless and colorless you simply open the bag and breath it in 100% statisfaction guarantied and its free just send $500 for shipping and handling.
   8-)

fly gas wrote on Dec 24^th, 2008 at 11:15am:

With regards to the couple who have nothing better to do than follow me around and post muddled little clip art slurs.

Gee, I thaught he liked Yoda? ;D

what the hell is fly gas? :D

-johnny- wrote on Dec 24^th, 2008 at 3:21pm:

what the hell is fly gas? :D

SO2...

wrote on Dec 24^th, 2008 at 3:36pm:

-johnny- wrote on Dec 24th, 2008 at 3:21pm: what the hell is fly gas? :D SO2...

 Whats SO2,  I thought flygas was methane that was excreted from a flies rectum.

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Merry Christmas to everyone!!!

Nicer friendlier Scott