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Topic: CH episode triggered by emotional stress (Read 5916 times) |
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Annette
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Re: CH episode triggered by emotional stress
« Reply #25 on: Feb 6th, 2008, 12:25am » |
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on Feb 5th, 2008, 11:58pm, pattik wrote:
You have essentially stolen a copyrighted article without even crediting the site from which you stole it...bad manners and unprofessional.
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Stolen? I got it through JNNP, Journal of Neurology Neurosurgery Psychiatry. It has a reprint there in pdf form available free to anyone who register.
You spoke as if I have some personal gain by "stealing" this article!
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Pinkfloyd
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Re: CH episode triggered by emotional stress
« Reply #26 on: Feb 6th, 2008, 12:38am » |
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on Feb 5th, 2008, 10:57pm, Annette wrote:
Its free to register as member and article that are more than 12 months old are free for all members.
What is your problem Bob ?
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You really don't want to know what my problem is.
OTOH, there are some facts you need to know.
As was pointed out above, it's against the law to copy and print (in any form) copyrighted materials. It's a classless unlawful act when you don't even give credit to the people you stole it from.
When I said it was no longer, technically "free" when people have to join to read it, that means that there are dollars involved in memberships.
Higher memberships mean the site can charge more for the ads they display on their site.
When they can charge more for their ads, they can pay more for their articles. The people that own the copyrights to these articles get paid every time someone clicks on the article to read it. Even when people pay nothing to read the article, they still get paid for click-throughs.
When more people click on, and read an article about cluster headaches, someone gets paid. The more they get paid, the more they want to write more articles on cluster headaches.
The more people that click on a cluster article, paid subscription or not, the more that site will want to publish more articles on clusters.
If 10 people here wanted to read that article, and were directed there by a link instead of the entire article, then 10 more people would have clicked on the site. Maybe 100 people would have clicked on it. Not now. Why bother...they can read the illegal copy of it here. Saves them time.
The site owners will some day sit down in their board room and say, hmmmm....only three people clicked on that cluster article. Why waste bandwidth on something no one is interested in reading. Lets add an extra diabetes article this week.
You have done this before and I wish you'd stop it and start posting links instead. It will help cluster research instead of hampering it.
Bobw
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nani
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Re: CH episode triggered by emotional stress
« Reply #27 on: Feb 6th, 2008, 1:04am » |
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on Feb 5th, 2008, 6:58pm, Annette wrote:
Cranial vascular dilatation occurs in a hit if triggered by alcohol or glycerin nitrate, but this doesnt happen in chronics or in out-of-cycle episodics. Therefore it cant be considered the origin either.
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Which doesn't happen? The dilation or triggers?
FYI, there are some of us chronics who can be triggered by both alcohol and nitroglycerin.
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BarbaraD
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Re: CH episode triggered by emotional stress
« Reply #28 on: Feb 6th, 2008, 6:47am » |
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Ya know kids, I've been here longer than most and for all these years we've been grabbing at any straw that sheds ANY light on this dibilitating thing called CH.
Anyone who finds anything pertaining to CH has always been free to post it (copyrighted or not) and that's always been something the rest of us appreciated and was open for discussion. Most of us appreciate the time the "donor" took to research what was posted. It's also how a lot of information was gathered that's available on this board.
Now, with that said, back to our regular programing......
I've always found that my CH occurs when I relax.. not when I'm under stress (go figure that one). My doc and I watched this for a while and it seemed that everytime I totally relaxed, I got hit bad. When I went chronic, I had been thru about 6 months of the most stressful time in my life with "nothing" in the way of CH - then took a cruise and was in the middle of the Carribean on the "Love Boat" with "no worries" at all and BAM!!! - haven't had a pain free month since (that was in 97).
Alcohol and nitro don't seems to trigger my CH but the barometer does. Other than that I don't know of any triggers except that I'm alive. Have never been able to pinpoint anything else (and Lord only knows I've tried so I could avoid it!).
Oh well, back to the drawing board.... 
Hugs BD
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seasonalboomer
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Re: CH episode triggered by emotional stress
« Reply #29 on: Feb 6th, 2008, 7:04am » |
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So, the step in the process is to build a huge thread where everyone lists those things that have never triggered a CH for them.
1.) Fresh raspberries
2.) Toast with Marmalade
3.) A glass of water....
4.) My labrador retriever
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pattik
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Re: CH episode triggered by emotional stress
« Reply #30 on: Feb 6th, 2008, 9:44am » |
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on Feb 6th, 2008, 12:25am, Annette wrote:
Stolen? I got it through JNNP, Journal of Neurology Neurosurgery Psychiatry. It has a reprint there in pdf form available free to anyone who register. |
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Yes, to those who REGISTER. JNNP is part of the BMJ Publishing group who holds the copyrights, even for the articles offered free to REGISTERED USERS.
Quote:Journal of Neurology, Neurosurgery, and Psychiatry 2006;77:1097-1099; doi:10.1136/jnnp.2005.087247
Copyright © 2006 by the BMJ Publishing Group Ltd. |
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The license I quoted earlier is from BMJ, and it doesn't mention allowing people such as yourself the right to paste it wherever it benefits you. The extract is considered free, however.
Quote:| You spoke as if I have some personal gain by "stealing" this article! |
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tommyD
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Re: CH episode triggered by emotional stress
« Reply #31 on: Feb 7th, 2008, 6:30pm » |
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Quote:| Anyone who finds anything pertaining to CH has always been free to post it (copyrighted or not) and that's always been something the rest of us appreciated and was open for discussion. Most of us appreciate the time the "donor" took to research what was posted. It's also how a lot of information was gathered that's available on this board. |
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Really? Where? Bob Johnson and many others have posted abstracts, and there are links to info on this site that folks on this site have written, but otherwise, I don't know of many copyright violations on this site. Most folks post a few paragraphs and a link (this is okay under the concept of fair use) .
Posting entire copyrighted articles or more than a few paragraphs of copyrighted articles is NOT okay. In the US, it is actually a criminal act, and both criminal and civil penalties are possible.
And money doesn't necessarily have anything to do with it (outside of determining awards in civil suits). It doesn't matter if the copyright owner allows people to read it for pay or for free. Outside the bounds of fair use, copyrighted material can only be reproduced with the copyright holder's permission.
And while there is a lot of unsettled law on who is responsible for the contents on a web discussion board, it might be DJ who would be in the hot water. Lets be careful, folks.
-tommyD
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Annette
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Re: CH episode triggered by emotional stress
« Reply #32 on: Feb 7th, 2008, 6:59pm » |
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Alright, I havent posted here because I wanted to spend a bit of time thinking about everything that has been posted before saying anything more.
I guess I was enthousiastic about posting new/interesting information that will benefit CHers and personally I didnt think posting that article would cause any problem to anyone, especially DJ. If any of you believe that this can be a problem then you can write to JNNP or BMJ reporting the incident. If they raise a question, I will be happy to respond to them.
However, what I want to question is the motive of such a reaction. Everyone here knows that it stems from personal issues rather than anything else.
I find it ironic that the same people who advocate the use of illegal substances would speak out so loudly about what is lawfully appropriate or inappropriate. I have seen many things done here that potentially is a lot more "illegal" or morally incorrect such as using someone else meds or using pirated copies of certain programs. I have also seen people being told blatantly to use LSD and to consume RC seeds which are all illegal activities when it comes to the laws.
However, these activities have always been overlooked because it is based on compassionate ground. There are people who need these substances for treatment. So far DJ has not had any problem with the laws about these topics being discussed here, I fail to see how posting an article that is free with a free registration is going land him in hot water.
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writer
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Re: CH episode triggered by emotional stress
« Reply #33 on: Feb 7th, 2008, 7:38pm » |
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I am very happy to read Annette's and Starlights' comments.
They bring an openness that I've missed in the past, when posting here and alluding to the possibility of an emotional component in clusters always brought down the wrath of God from fellow sufferers, at least on me. To say such speculation was discouraged is an understatement.
I do believe that in my own case, the trauma of repeated, early childhood sexual abuse was a major cause of my clusters in adulthood. It have a feeling that clusters are an expression of whatever trauma happened very early on, before there was adequate language to express the pain/confusion/terror. A kind of attempt "to tell," as it were. (The work of esteemed neurologist/psychiatrist Bruce Perry, M.D. described on his web site is very specific on the adult manifestations of early trauma.)
I would not deny that there may be some genetic or other component in clusters as well, but a personal experience of my own may be of interest: Although I was an episodic sufferer, I was not in a cluster cycle. I had no (conscious) memory of trauma. But one day, writing in my journal, a torrent of hideous memories poured out, and as I wrote, faster and faster, a fierce cluster headache announced itself, even though I was not in cycle.
My God, this has to be a clue, I thought. So I found an expert therapist in the child abuse field and spent years reliving the past so as to put it to rest and be able to live in the present. It worked. After 30 years of severe, seven-week bouts twice per year, I am free of cluster for 11 years and my life has expanded with much joy and contentment.
This does not mean that child sex abuse antedates most or even a majority of clusters. What it does imply, to me, is that some very early trauma (see the Bruce Perry web site) did occur, and possibly combined with some genetic predisposition or hypothalamic or other dysfunction, to cause cluster.
I have other thoughts about the trauma/cluster connection bit
I think I've written enough for now. Thanks for the opportunity.
Barbara
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tommyD
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Re: CH episode triggered by emotional stress
« Reply #34 on: Feb 7th, 2008, 8:03pm » |
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I must apologize for piling on... feeling grumpy (modem broke and I got gouged on the replacement).
As practical matters go, it's not likely DJ or anyone here would suffer any ramifications unless posting entire journal articles became a habit - but med publishers are especially touchy about their copyrights. Free registration or not, they make money from that content.
While it may seem odd, in the United States it is generally quite legal to discuss and even encourage illegal activites, including the overthow of the government itself. There are limits - one cannot incite violence, directly conspire to commit a crime, or speak with fraudulent intent, and you can be sued for libel - but here in the States we can say just about anything.
And it is a criminal offense in the US to use copyrighted material without permission, though things usually don't get sticky until someone starts to think they're losing money. There are some good arguments for loosening the rules, but there would be little to read without copyright laws.
And if you want irony, there are those (usually corporations) who try to use copyright laws to suppress free speech (happily, they usually fail).
-tommyD
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Jonny
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Re: CH episode triggered by emotional stress
« Reply #35 on: Feb 7th, 2008, 9:04pm » |
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on Feb 5th, 2008, 11:58pm, pattik wrote:| You have essentially stolen a copyrighted article without even crediting the site from which you stole it...bad manners and unprofessional. I'm assuming that you got it from the BMJ group. Here is part of their license agreement which may be too difficult for you to understand: |
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My take on this is.......either you sue Annette for something that is not yours or shut the fuck up!
Man, I thought this shit was over when Annette pushed Bobs face into the floor with her credentials.......and he apologised like the assh0le he was.
Get the fuck over it, Bob......and have your hunch men back the fuck off......it dont look good on you, sir!
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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.
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chewy
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Re: CH episode triggered by emotional stress
« Reply #36 on: Feb 7th, 2008, 9:14pm » |
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on Jan 14th, 2008, 6:05am, Jonny wrote:
That drawing was done by a member of this family.
It cant be used on a shirt without his permission.
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Jonny
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Re: CH episode triggered by emotional stress
« Reply #37 on: Feb 7th, 2008, 9:28pm » |
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Are you really that anal that you have to chase me around the board?
Yes, I will stick up for Fletcher seeing that hes not here.
Now tell me oh great Don, how Annette is hurting anyone with what she did to bring information to this family about CH?
I guess you missed everyone thanking her for posting that info on the first page.
What a fucking putz, BTW, I will be starting another thread soon......look for it.....LMMFAO. 
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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.
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chewy
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Re: CH episode triggered by emotional stress
« Reply #38 on: Feb 7th, 2008, 9:36pm » |
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Make your new thread about Arizona. Theres a lot I can add to it.
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Jonny
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Re: CH episode triggered by emotional stress
« Reply #39 on: Feb 7th, 2008, 9:41pm » |
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on Feb 7th, 2008, 9:36pm, chewy wrote:
Make your new thread about Arizona. Theres a lot I can add to it. |
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Batter up!
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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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nani
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Re: CH episode triggered by emotional stress
« Reply #40 on: Feb 7th, 2008, 9:49pm » |
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on Feb 7th, 2008, 6:59pm, Annette wrote:
However, what I want to question is the motive of such a reaction. Everyone here knows that it stems from personal issues rather than anything else.
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I wouldn't flatter myself if I were you. It's not personal at all.
on Feb 7th, 2008, 6:59pm, Annette wrote:
I find it ironic that the same people who advocate the use of illegal substances would speak out so loudly about what is lawfully appropriate or inappropriate. I have seen many things done here that potentially is a lot more "illegal" or morally incorrect such as using someone else meds or using pirated copies of certain programs. I have also seen people being told blatantly to use LSD and to consume RC seeds which are all illegal activities when it comes to the laws.
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From the Clusterbusters website:
The Clusterbusters are a small, but growing, international group of Clusterheadache sufferers actively investigating the use of indole-ring entheogens and other natural substances to treat their disease. Our mission is to investigate indole-ring entheogens as possibly the most effective treatment yet found for Clusterheadaches, and to educate physicians, medical researchers, sufferers, and the public on the efficacy, advantages and disadvantages of this, and other treatments
No one advocates using illegal substances. Those of us who make that choice, however, also choose (with DJ's permission) to share our experiences with others.
There is no harm, and much good that comes from posting a link to good information.
Whether or not one case study represents good info is subjective, I guess.
Now, Annette, would you be so kind to answer the question I posed earlier in the thread?
on Feb 6th, 2008, 1:04am, nani wrote:
Which doesn't happen? The dilation or triggers?
FYI, there are some of us chronics who can be triggered by both alcohol and nitroglycerin.
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starlight
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Re: CH episode triggered by emotional stress
« Reply #41 on: Feb 7th, 2008, 10:35pm » |
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Johnny,
Thanks for saying (although much more dramatically and probably with a few more swears) exactly what I have been thinking. I don't know what the "personal problems" Annette mentions are and don't want to know (none of my business), but geez can people back off of her? Don't think she meant to do anything malicious, OK she posted an article, don't think it was like some huge gigantic offense to humanity. Chill people! Please 
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starlight
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Re: CH episode triggered by emotional stress
« Reply #42 on: Feb 7th, 2008, 10:49pm » |
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Writer,
I am glad if something I wrote helped you say what was on your mind.
I am sorry for the things you have experienced.
That was brave of you to talk about that, and I am VERY glad that you found relief from your headaches.
I don't think people should give you or anyone else a hard time if you feel that emotional stress caused or contributed to your headaches.
I don't see the sense in people acting that way and feel it is counteractive to anyone healing from the headaches.
Everyone has individual situations--not everyone shares the same exact kind of cycle or the same triggers or the same treatments that work, some have previous head trauma, etc. for example and all different factors like that, everyone has different things they feel they want to talk about, and people should be free to talk about their own personal situation I feel.
Star
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rolo65
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Re: CH episode triggered by emotional stress
« Reply #43 on: Feb 7th, 2008, 11:02pm » |
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This thread makes me think of a popular old song called 99 tokes on the oxygen mask.
I think we would all agree that we are here for help, and if you read threads like this one it will only make you want to go do something else. Some people need to learn how to take it like the preverbal grain of salt.
Lighten up and lower your stress instead of aggravating it over inconsequential crap. 
The only known trigger for me is hooking up the last M tank on Friday when I forgot to order on a three day weekend. 
Rolo…..
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MJ
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Re: CH episode triggered by emotional stress
« Reply #44 on: Feb 8th, 2008, 12:14am » |
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on Feb 7th, 2008, 6:59pm, Annette wrote:
Alright, I havent posted here because I wanted to spend a bit of time thinking about everything that has been posted before saying anything more.
I have seen many things done here that potentially is a lot more "illegal" or morally incorrect such as using someone else meds or using pirated copies of certain programs. I have also seen people being told blatantly to use LSD and to consume RC seeds which are all illegal activities when it comes to the laws.
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Annette
I cant say I have ever seen anyone blatantly told to use LSD on this site but then I dont read everything anymore and may have missed that.
Those that discuss or encourage LSD use are quickly shut down by all members including BobW.
What may be missing here is the fact that allthough you may have seen the suffering and pain one goes through with CH you yourself have never experienced that pain.
To understand the willingness of some to find relief at any cost you must first know the desperation we all feel when relief does not come and over and over we enter the depths of hell.
Many of the prescribed medications taken are ungodly cruel to the human mind and body, not to mention daily living.
When someone offers to share a med unsubscribed, though wrong, it is to save them and I would assume those recipients have had that prescription in the past. I dont condone that but I understand it.
With clusterbuster medications I will accept that forever as folks come to question about them. As I was saved so may another be but only if they so desire. (really its not a religion like it sounds)
First you have to hunger to understand hunger and the same goes for extreme pain that many of us have been consumed by for so long.
I believe that is why clusterbusters exist.
That is why many accept the medications, treatments, etc.. that others cant understand.
Lastly as a business man in America I fully understand why copyright laws exist it is to protect someones livliehood. Its no different than taking the tools of a carpenter who must build a house and expecting him to continue building.
I cant say I have never been quilty of this but I understand it.
Two very different issues. just my 27 cents.
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nani
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Re: CH episode triggered by emotional stress
« Reply #45 on: Feb 8th, 2008, 4:04pm » |
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on Feb 7th, 2008, 9:49pm, nani wrote:
Now, Annette, would you be so kind to answer the question I posed earlier in the thread?
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Re: CH episode triggered by emotional stress
« Reply #46 on: Feb 8th, 2008, 5:52pm » |
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on Feb 6th, 2008, 6:47am, BarbaraD wrote:| I've always found that my CH occurs when I relax.. |
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CH has in the past been known as Holiday Headaches or Executive Headaches because cycles have begun immediately following the sudden cessation of stress. One of our friends here at ch.com for a long time had a tag-line along the lines of "Stay sressed, never relax, never go to sleep".
For this reason I have no problem at all with the suggestion that some cycles could be caused by the exact opposite - the sudden onset of stress.
Interestingly I've twice in the past had cycles broken on the spot due to severe emotional upset. One when my father passed away suddenly and another when I was busy being shot at. Naturally I don't reccommend either as a cure but there you have it - stress can certainly be a factor for some.
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Annette
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Re: CH episode triggered by emotional stress
« Reply #47 on: Feb 8th, 2008, 6:07pm » |
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on Feb 6th, 2008, 1:04am, nani wrote:
Which doesn't happen? The dilation or triggers?
FYI, there are some of us chronics who can be triggered by both alcohol and nitroglycerin.
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I have read several times here that alcohol and/or nitrogen doesnt trigger CH hits in chronics. Thanks for letting me know it does in some.
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Annette
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Re: CH episode triggered by emotional stress
« Reply #48 on: Feb 8th, 2008, 6:48pm » |
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on Feb 8th, 2008, 12:14am, MJ wrote:
Annette
I cant say I have ever seen anyone blatantly told to use LSD on this site but then I dont read everything anymore and may have missed that.
Those that discuss or encourage LSD use are quickly shut down by all members including BobW.
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I will PM you the quote as I dont want to start another personal fight here.
on Feb 8th, 2008, 12:14am, MJ wrote:
What may be missing here is the fact that allthough you may have seen the suffering and pain one goes through with CH you yourself have never experienced that pain.
To understand the willingness of some to find relief at any cost you must first know the desperation we all feel when relief does not come and over and over we enter the depths of hell.
Many of the prescribed medications taken are ungodly cruel to the human mind and body, not to mention daily living.
When someone offers to share a med unsubscribed, though wrong, it is to save them and I would assume those recipients have had that prescription in the past. I dont condone that but I understand it.
With clusterbuster medications I will accept that forever as folks come to question about them. As I was saved so may another be but only if they so desire. (really its not a religion like it sounds)
First you have to hunger to understand hunger and the same goes for extreme pain that many of us have been consumed by for so long.
I believe that is why clusterbusters exist.
That is why many accept the medications, treatments, etc.. that others cant understand.
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I have repeatedly stated again and again that I personally have no problem with people using whatever works for for CH. I dont have CH and will never feel the physical pain of it but I lived with it for more than 8 months and the pain of watching the person I love the most rolling on the floor, begging me to kill him to put him out of misery day in day out was also tremendous. I dont think anyone is entitled to say that the pain of one is more or less than the other. To tell the truth, I would rather have CH myself than watching a loved one going through a hard cycle.
I have researched into psychedelic treatment as much as I could and have exchanged emails with both Dr Halpern and Dr Sewell on the subject. I have bidded for and won and am currently reading the books "Psychedelic treatment : New evidence for halluginogenic substances as treatment". I have read the clusterbusters website word for word. Personally I think psychedelic substances have huge potentials as medicine but as any substance with powerful mind altering effect, one needs to be extra careful in its use. There needs to be a lot more research done before one can say we understand how it works in a human body.
on Feb 8th, 2008, 12:14am, MJ wrote:
Lastly as a business man in America I fully understand why copyright laws exist it is to protect someones livliehood. Its no different than taking the tools of a carpenter who must build a house and expecting him to continue building.
I cant say I have never been quilty of this but I understand it.
Two very different issues. just my 27 cents.
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I agree totally about copyright issue and the need to respect it. However, here I posted an old article that is free to all those who register, and registration is free. The site has a policy allowing free viewing of articles that are older than 12 months. Obviously from experience they would have found that most researchers ( people who use and quote articles for their own benefit in their own work or publication ) are not interested in old articles and that hardly anyone would use them. Otherwise they would not have this policy at all.
Sure, if I was to be 100% politically correct I would only post a link and get people to register themselves to view the article. I will endeavour to do so from now on. Still what I did wasnt "stealing". The reaction I got from a couple of people was obviously an attempt at personal attack and defamation rather than being constructive.
If we are to get nitty gritty, which one of us hasnt been guilty of copyright issues ? Strictly speaking we shouldnt lend a book or a CD or a DVD to anyone, because by doing that, the other person wont have to go buy their own copy and therefore the artists/writers lost out on a sale ! The same with downloading things from the Net. Just because someone uploaded something for you to see or read, doesnt mean you should copy it and download it yourself ? Are you sure you have never done any of this ?
In effect, the minute anyone here posts a gif to wish someone a happy birthday or congratulation, is violating copyright laws. How many people here actually own all the gifs and pictures that they post liberally whenever they feel like it ?
Maybe two separate issues, but the attitude is the same.
My 25 cents
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| « Last Edit: Feb 8th, 2008, 7:36pm by Annette » |
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Mediocrity knows nothing higher than itself; but talent instantly recognizes genius.
Arthur Conan Doyle
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Annette
CH.com Alumnus
New Board Hall of Famer
Veni Vidi Velcro
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Posts: 1874
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Re: CH episode triggered by emotional stress
« Reply #49 on: Feb 8th, 2008, 7:01pm » |
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Dear Writer/Barbara
I am glad the discussion on the topic helped you and I have great admiration for your courage to share such personal information the way you did.
I hope you will post and share more.
Take care and painfree wishes. 
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Mediocrity knows nothing higher than itself; but talent instantly recognizes genius.
Arthur Conan Doyle
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