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Duke
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Message from an outsider 2
« on: Feb 14th, 2004, 3:15am » |
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1. I am an ordinary guy who thought he had some info you had not found yet and might be interested in.
2. I pondered for a couple days whether or not to post about my research into health and diet on your board.
3. The board has limited space and had to cut half of what I started with. Tried to be straight forward, no intent to offend anyone in any way. A poor choice of a few words, some of your comments give a big clue of what not to use next time.
4. The sites I suggested I found interesting and informative.
5. I have no ties to any site nor am I salesman of any product, least of all a sure cure.
6. Brother-in-law started his diet change a week ago. He is in cycle now. He had been PF since '98. He doesn't have a clue of what his trigger is. His CH started at age 18, after his mother died. Kip scale starts at 1, goes to 10 for awhile, then down to PF, cycle usually last a couple weeks. Personally I didn't expect diet to effect this cycle. Objective in diet change is to move toward more natural foods. The thinking here is that processed foods, etc., have many chemicals that effect body chemistry, correct the body chemistry and maybe the CH will go away (cure??). Perhaps nieve, but seems better than doing nothing at all, which is what he was doing. Andy is more than willing to try this diet change. Expect it will take him at least 6 months to make a comprehensive diet change. Then knowing whether or not this diet change has had an effect on his CH won't happen until he has another attack, if he has another attack. Looking at how long he was PF, reporting a success or a failure, could be 4 years in the waiting. Felt 4 years was to long to wait, so decided to make my post.
7. AlienSpaceGuy - concerning QuackWatch, had already been there. Agree with having to be weary of being scammed. However, my personal opinion is that modern medicine is practicing quackery.
8. Mac - I did a search on "triggers" and still found little relating to diet, least ways not the kind of discussion I was hoping to find.
9. eyes_afire - I am not qualified to give you a techincal or adequate answer.
1) I have thought about that statement and still believe processed adulterated foods are involved. CH being rare points out how different we are from each other in our chemical composition, why some foods and chemicals have different effects on different people (has to do with our metabolic type). Know this is an oversimplified answer and will be found inadequate.
2) It is the added chemicals I think are involved (a piece of the puzzle). How or why I haven't a clue, wish I did. Wonder if there is a pinched nerve.
3) Ouch! I can't, but would want to know more about the people who have had remissions. Perhaps an emotional issue resolved.
10. From my study of your "Medical Info" link knew there were many pieces to the CH puzzle. I will stick with trying to help Andy figure out what causes his demon.
Well, folks, I feel I stuck my nose into an open doorway that I should have stayed out of. Sorry for ruffling a few feathers.
If, sometime in the future, I have something good to report on Andy's diet change will let you know.
Sincerely, Doug
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ave
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Re: Message from an outsider 2
« Reply #1 on: Feb 14th, 2004, 5:28am » |
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If you have not a clue about
* cluster headaches in general
(talking about a "trigger" for an episode; outside an episode triggers don't precipitate attacks))
* natural and unnatural (every molecule in the entire universe IS natural, you know; many substances taken from nature are more harmful than substances filtered and purified in labs)
* which chemicals are involved here, or
* which processes
If you haven't a clue, it might be best not to get up people's hope, nor to lure them away from procedures and meds which may seem to you unnatural, but which have at least helped cluster sufferers.
Poor brother in law, has to wait 6 months before it "helps". What's to bet his episode is finished by then? And you'll reap the laurels for "curing" him.
Do you really want to do something for him? Send him to this website. He can then make up his OWN mind.
Which is what this board is all about.
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t_h_b
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Re: Message from an outsider 2
« Reply #2 on: Feb 14th, 2004, 6:58am » |
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Doug,
I had no doubt about your sincerity when I read your first message. It is very heartening to see a ClusterHead supporter doing hundreds of hours of research with one of the aims being to help the ClusterHead. He must appreciate you very much and you sound seem to be a wonderful person to have as a brother-in-law.
Doug, you have even taken time to learn a little about this chronic condition. Very few people know a lot about clusters outside of some of those afflicted by them and a very few physicians.
It is very unfortunate that adhering to a certain diet or taking a certain supplement doesn't help the vast majority of ClusterHeads--other than avoiding alcohol. (And some ClusterHeads are unaffected by alcohol.) I know my diet affects me greatly even though it does not appear to affect this particular problem.
It is also very unfortunate that clusters don't seem to be caused by anything as simple as a pinched nerve. One of the symptoms of this condition is trigeminovascular headaches with an unknown cause that likely involves the hypothalamus. There is a pattern to these headaches that involves circadean rythm.
Sorry that you took so much flak: there is a general ignorance of this condition even in the medical community that has caused a quantity and intensity of suffering for hundreds of thousands of people that borders on the incomprehensible and so among us there is little tolerance for the ignorance, even from a well-meaning source. There was probably also the suspicion that you were laying the groundwork to sell some sort of diet supplement "cure". (Check out past examples in the message boards and you can get a good laugh out of it. Some of these people operate under PT Barnum's philosophy.) And your post DID have a little of the "self-proclaimed prophet" aura to it.
Please return here often to read the information contained in the links to your left as well as in the library found on the OUCH website. Also, please ask your brother-in-law and your sister to come here so that they can learn more about his condition is well. Perhaps he can find other things to help him as well. It may mean a lot to him just to know that there are others with the same condition. The door is still open and you are welcome to come back any time to learn and share information.
Thomas
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| « Last Edit: Feb 14th, 2004, 7:10am by t_h_b » |
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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don
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Re: Message from an outsider 2
« Reply #3 on: Feb 14th, 2004, 8:21am » |
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Point is this.
There are (or were) people here who have done years and years of research out of neccesity. If a "cure" were as simple as a diet change dont you think we would know it by now?
Do some more research, especially in the archives of this site.
When you find a connection between diet and the hypothalamus gland , get back to me.
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Kevin_M
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Re: Message from an outsider 2
« Reply #4 on: Feb 14th, 2004, 9:01am » |
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The above explainations seem well comprised. I can only add that my diet has been as chemical free and natural as I can make it for a time longer than I have had clusters. Doing so though has not alleviated me from any unfriendly visits of CH. The pain, and frequency remain out of reach of what you may think is something that may help. Reread Ave and Thomas.
I would have perhaps simply asked if anyone has found any certain diet change to affect their CH. Sometimes it is not the question that is misconstrued, but the way it has been stated.
Myself, the "ignorance is bliss" and "we all missed the boat" are statements as opposed to questions, and presuppose an implied narrow mindedness and a neglect of a moral imperative here on the site.
Relationships are built on trust, need and mutual understanding. Intelligence is only as good as its expression. Limited not just by language but by the credibility of whoever does the disseminating. That factor had not been established.
The connectedness of social learning frequently finds that precooked ideas fall short, when it comes to CH, forcing us to come up with fresh perspectives. Detours, surprises, frustrations amount inpart to... excessively narrow focus.
It may seem, with all the joking and off kilter humor that passivity has been chosen over responsibility, or a preference for distraction over information, but it is effective relationships with its practical consequences which can have a significant impact in such a social reality. I'd say we owe our abundance to our collective, not our individual brilliance.
We are fortunate enough to have a board here that more or less works, and perhaps our first priority is to not screw it up. The best we can hope for are incremental changes that are continously adjusted according to feed back about the sum of their good and bad consequences. Tragic vision? I choose such as opposed to a Utopian vision. Language distracts as much as it informs.
Don't wish to seem argumentive. We're always open.
Kevin M
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Duke
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Re: Message from an outsider 2
« Reply #5 on: Feb 14th, 2004, 12:37pm » |
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Thanks to all for a response to my posts, both positive and negetive.
Will try to get Andy to visit, but at this point in time in his life he has a lot on his plate to deal with. When I found your site and talked to him about it he showed little interest in making time to get involved. Know it would be good for him.
I perfer to discuss a subject rather than argue it. At this point in time I do not have enough background knowledge to intelligently discuss CH with you. I will be checking the board for info, doubt very much if I will be much of a particpant.
Understand where some of you were coming from and why.
Wishing you all as many PF days as possible.
More later, Doug
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Kevin_M
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Re: Message from an outsider 2
« Reply #6 on: Feb 14th, 2004, 12:58pm » |
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Hey, Doug, stick around. You are one step ahead of your brother-in-law toward coping with CH. There is a very good supporters category to ask questions for him.
Asking questions is a good secret of observation, looking for specific answers to specific questions. It is impossible in the English language to make any assumption by asking a question. Cannot be done.
If you can get your brother-in-law to come, tell him we're here for him.
Kevin M
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jonny
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Re: Message from an outsider 2
« Reply #7 on: Feb 14th, 2004, 1:07pm » |
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on Feb 14th, 2004, 12:37pm, Duke wrote: When I found your site and talked to him about it he showed little interest in making time to get involved.
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Someone with cluster headaches not intrested in talking to other clusterheads?
Most people end up in tears knowing they are not alone in this hell.
Oh well.
................................jonny
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kim
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Re: Message from an outsider 2
« Reply #8 on: Feb 14th, 2004, 1:21pm » |
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About 6 years ago i went through the cycle from hell. I did not know my ass from my elbow (shut up you turds  )..........ANYHOW....
Brian - (my hubby) went into work and talked about clusters with co-workers who went on internet and found this site...they printed info out and took home to me....I NEVER WENT ON MYSELF AND CHECKED IT OUT. At the time, I was just too sick to care about anything but the end of pain....i think we had just got a computer.....but looking back, i see that i was at a "weird" time in a place so separate and insular....I was grateful for the information but did not feel motivated to come and see for myself....then the cycle ended and i conveniently "forgot" those troubles.....NEXT cycle came along -- and i was "READY". I IMMEDIATELY sat down and typed in the words MYSELF. I actively participated and am forever glad i did.
Each person has their OWN way. I would never judge.
Doug, for most people clusters is like this mysterious thing a sufferer gets so used to having them ALL ALONE....it's an individual thing in terms of if and when they choose or are emotionally ready to seek out a website answer. I understand.
Best luck, don't get discouraged and keep on keepin on! When we are trying to deal with this - all sorts a stuff goes down! Thanks for checkin in and hope ya don't check out***
Well wishes, Kim
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kissmyglass
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Re: Message from an outsider 2
« Reply #9 on: Feb 14th, 2004, 1:25pm » |
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You're right Jonny, I can't imagine it's possible for a true Clusterhead to not want to be here, even to just read & lurk....
Kev
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Mac
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Re: Message from an outsider 2
« Reply #10 on: Feb 14th, 2004, 1:59pm » |
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Sorry if we seem jaded Doug. It's because we are. Your not the first person to join this site and tell us if we only changed our "lifestyles" we would be miraculously cured. We had a "clusterhead"  join a couple of months ago claiming to have been cured and all he had to do was wear some kind of power wristbands. It was the lowest thing a person can do to someone suffering from "The Beast". He was kind enough to give us a link to follow right to some charletons web page so we could line some as_sholes pockets. Never heard from him again. Your dealing with a lot of desperate people here. I hope you do keep us up to date on your brother-in-laws progress. The problem with figuring out if he's cured could be a problem however. Some people go out of cycle for YEARS. When will you be able to positively say he's cured?
No offense was meant(well maybe a little) but encourage your brother-in-law to join this site. He would be amazed at what a little comradery will do for his overall outlook. He might even find someone in his area that can relate to his problem. As much as you can imagine what we go through it takes another clusterhead to understand exactly what we go through(I'm chronic - oh joy).
That said - stick around. We need supporters like you to get the word out.
Glen
P.S. since when are we being censored.As-shole is practically a term of endearment on this site 
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| « Last Edit: Feb 14th, 2004, 2:03pm by Mac » |
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Charlie
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Re: Message from an outsider 2
« Reply #11 on: Feb 16th, 2004, 5:02am » |
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Quote:| However, my personal opinion is that modern medicine is practicing quackery |
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This is the kind of thing that sends up red flags here. Cranks always say: "Only I have the answer. No one believes me. Why is the rest of the world so stupid? Questioning my solution is a nono."
Sorry but I see it all the time. Maybe you are sincere but it's standard fare from crackpots and so-called alternative medicine gurus.
I do hope you get him to visit. Relying on a dietary solution is iffy. You need to load both barrels when you fight the beast.
Charlie
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