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        Cluster Headache Help and Support >> Cluster Headache Specific >> Annettes Post (Thanks!)
        
(Message started by: Superdave on May 7^th, 2008, 7:37pm)

Title: Annettes Post (Thanks!)
Post by Superdave on May 7^th, 2008, 7:37pm

Annette,

Thank You; for taking the time to research this enormous amount of information, posting it with the best intentions and spending a very long day attending to your post. And may God (which ever God you choose of coarse) bless you for it.

I for one think there is way to little of this sort of correspondence on this board. There is so little research being done on the subject of ch that a cure, well is probably a long way off. Though research has shown some of the causes, the reasons for this affliction are still a mystery.

LeeS put up a post on this thread remarking "it was a thread killer" (perhaps since it is his own theory) but it has some very good information and interesting points in it. I happen to believe he is on the right path. If more people were willing to sacrifice there virtual reputation by posting there hypotheses, theories and personal experiences with ch. We might start seeing a pattern, something we could put our finger on. I have shared my experiences in this manor and killed a few threads myself.

And LeeS please PM me the rest of your paper I would love to read it. Makes a lot of since. I’ve had issues with ch since I was a child, it went out of control when I turned 40, was under more stress than I had ever been in my life and injured my neck about three weeks before the attacks begain. They haven’t stopped in almost 6 years now, I would like to know why.

I’ve seen Newbies show up here seeking to share their experiences and find hope. Only to be told they didn’t have ch because there methods of relief didn’t fit the clusterheadaches.com protocol. They didn't realize thier head was on a chopping block the second they clicked post.
Just because a guy finds relief from a chiro, means he doesn’t have cluster headaches?....................
Are we sure about that?.....................................
Or is it just someone here has that theory?........................

We are the ones with the answers. I know of no one else who can find the common denominators. If we continue to stifle each others ideas and theories, thoughts. We might as well stand around with our thumbs up our buts, while Dr. Goadsby finds a cure for us.

Thanks Again Annette

Later Superdave 8)

Title: Re: Annettes Post (Thanks!)
Post by Annette on May 7^th, 2008, 8:29pm

Thank you very much for your very kind PM and this message. I am very touched by it !

I am glad you find the information interesting and I am sorry the way the thread went south.

For 2 years I have spent a lot of time reading, researching, talking to people, asking millions of questions and very closely observing my husband's CH and trying to put it all together as something meaningful or useful to share with others. My intention has always been to help. Since CH is so diverse there is no way I can reach everyone but even if one person finds it helpful in some ways its worthwhile.

Thank you again and God bless you too.

Annette

Title: Re: Annettes Post (Thanks!)
Post by BMoneeTheMoneeMan on May 7^th, 2008, 8:56pm

on 05/07/08 at 19:37:42, Superdave wrote:

Just because a guy finds relief from a chiro, means he doesn’t have cluster headaches?....................
Are we sure about that?.....................................
Or is it just someone here has that theory?........................

Due to the statistics, it is a theory. When 100 people see a chiropractor to get relief from CH and only 1 reports some relief, does that mean its a success?
Are you sure about that?
Should we tout chiropractors as healers?

One dude out of 12,000 says farting helps CH. Does that mean farting is a success?
Are you sure about that?

If 100 people take oxycontin to get relief from CH and 2 people say it helped a little, does that mean its a success?
Are you sure about that?

My point is: statistically speaking, when someone says they get relief from their clusters by taking anti-biotics and a nap, it is statistically more likely they do not have CH than it is likely they got CH relief from antibiotics and sleep.

Title: Re: Annettes Post (Thanks!)
Post by George_J on May 8^th, 2008, 2:10am

Yes--thank you, Annette. :)

I do not think that questioning aspects of something that is put forth constitutes a personal attack--in many cases (I know that that was my intention) it's simply an attempt to clarify what is being advanced, so that it may be understood fully.

After all--hashing things out is one of the better ways in which we discover what to think about something.

To me, at least, this is the measure: Does what has been said contribute to the discussion--even if strongly worded--or is it merely a distraction?

Again--thank you, Annette. And thanks to all who contributed to this thread. Much grist for the mill here.

Best wishes,

George

Title: Re: Annettes Post (Thanks!)
Post by Annette on May 8^th, 2008, 2:55am

on 05/08/08 at 02:10:39, George_J wrote:

Of course not George, I welcome all and any question and I tried to answer them all to my best ability. If and when I couldnt answer I would get all excited because here was the opportunity for me to learn something new. If and when someone pointed out something I said was wrong I got even more excited as I actually learnt something already! I was really hoping for a lot of questions and comments on the topic as it would get really boring if everyone agreed with everything. There would be no opportunity for growth then.

However, I do consider comment that liken what I posted to be psychobabble as a personal attack, or question about who I was or what my husband had 2 years ago to be a personal attack. Wouldnt you agree?

Title: Re: Annettes Post (Thanks!)
Post by BarbaraD on May 8^th, 2008, 8:02am

Having been around Clusterville longer than most, I've seen things posted that are helpful to some and some things that are totally out in left field (not that I haven't tried them :) ), but the point is -- this site is here to SHARE information on everything we come up with.

We share and DISCUSS -- nothing is written in stone (at least not yet). I agree, personal attacks should not be a part of anything here. Sometimes things just don't come out right when written and we tend to take them the wrong way (and sometimes they're meant that way), but we just have to take those with a grain of salt and move on.

I think we just forget that we all react differently to these things -- I know I've told people for years that a CH didn't last all day UNTIL I had one that did - then I ate crow BIG TIME. I found out that day that the more we think we know - the less we do.

A lot of you (Annette and Bob Johnson especially) do a lot of research and for that I'm grateful. This site was built on people doing that and that's why we have the information here that we do today. Without that research we wouldn't have the info on O2, Charlie's circulation technique, Margie's waterX3, the Kip Scale or 100's of other useful information.

Maybe some of us oldtimers (who've heard some of these "cures" 100 times) should think before we post about "that's a rip off - forget it" to a newbie who's just discovered something that helped "one time" and send them a PM instead explaining nicely what's wrong and give them an alternative remedy. Maybe we should remember some of our "early" posts when we found something that gave us a little relief at one time or another. (Hot sauce under the tongue?, Capsasian cream? Ginger ale and grape juice?)

Anyhow that's my 2 cents worth. Carry on kids.....

Hugs BD

Title: Re: Annettes Post (Thanks!)
Post by Giovanni on May 8^th, 2008, 8:28am

Another thank you from me. We're fortunate to have a medical doctor who has spent a lot of her personal time on clusterheadaches.

John :)

Title: Re: Annettes Post (Thanks!)
Post by michael on May 8^th, 2008, 10:05am

A big thankyou from me Annette.
Sharing ideas is the best way to trigger ideas in someone else. And one day, just maybe.....

Keep them coming

Mike

Title: Re: Annettes Post (Thanks!)
Post by mezza on May 9^th, 2008, 12:46am

Annette-

I appreciate your post and i do appreciate the posts from a medical perspective that are easier to understand- I for one am someone who does tend to skim a more technical medical post in terms of language-
that's just me - although i am impressed by those posters who take their time too to help the cause!

The debates are interesting and i appreciate the time you have taken to research Ch

Keep up the good work!! Its obvious that you have just as much support here for your efforts as you do non supporters and naysayers!

Thanks again-

kelly

Title: Re: Annettes Post (Thanks!)
Post by gore2424 on May 10^th, 2008, 3:02am

Thank you for your posts I learn more everyday from this board Ü

Title: Re: Annettes Post (Thanks!)
Post by Annette on May 10^th, 2008, 5:43am

Thank you so much everyone for your most kind gestures ! I am very touched by you all.

I will endeavour to share more as I manage to learn more about CH and will try to learn how to post my views in a less confrontational manner.

Title: Re: Annettes Post (Thanks!)
Post by seasonalboomer on May 12^th, 2008, 6:11am

That'a girl!

As for Superdave's comment at the beginning:

"Only to be told they didn’t have ch because there methods of relief didn’t fit the clusterheadaches.com protocol. They didn't realize thier head was on a chopping block the second they clicked post. Just because a guy finds relief from a chiro, means he doesn’t have cluster headaches?.................... Are we sure about that?..................................... Or is it just someone here has that theory?........................"

Dude. This kind of input is likened to those appeals that tug at the heart in politics today of, "we've got to do it for the children." Screw that. Someone comes in here and starts spouting about how they found snorting drano as a benefit I think it must be pointed out that we don't believe it is effective and could be fatal. As for chiro's --- haven't ever seen many posts that say, "yeah, me too, worked like a charm." For the majority of sufferers there are a handful of effective strategies. If we can get people to focus on these known successful strategies rather than chasing after (and losing money) on false crap then we stand a chance to have someone change their lives for the better.

Scott

Title: Re: Annettes Post (Thanks!)
Post by writer on May 12^th, 2008, 11:53pm

Annette - Here's another hooray for your research efforts. Every one of them is invaluable, in the long run.

Quite a while ago I gave up posting results of my own efforts, having been ignored and/or jeered away.

Cluster sufferers are the experts on cluster headaches, and I continue to hope they will stop waiting around for someone else to find a magic pill or cure and begin posting all their hunches as to the etiology of this miserable affliction.

I hope that when and if that happens, others will read their posts with equanamity and interest, not dismissal.

Keep on, Annette!

Title: Re: Annettes Post (Thanks!)
Post by Transamdoug on May 16^th, 2008, 3:36pm

Hi all, I'm glad to see this discussed as I am a newbie and have limited knowledge as to the treatment of CH, the tried and true methods and what is old wives tale treatments proven false. Its obvious no one is sure of the cause and no one treatment seems to work for everyone. I plan to be as proactive in my treatment plan as I can be and if I read that some guy quit eating sugar and CH was gone I'm going to post it and ask and try it myself if I know it to be harmless. But I am going to ask. I'm just here to learn as much as I can to help myself and hopefully some others find ways to deal with this horrible affliction. I will be reading old posts and trying to educate myself in the mean time but I'm sure there will be some who say "another newbie stupid question" to some that I have, oh well. If you take a moment to answer and share what you know I and others will soon learn whats phony and whats not. Maybe run a post of common wives tales so the newbie has that to refer too. Just looking for answers like the rest of you...Give the FNG a break!