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Topic: VENT: What's your Poison: Meds or Alternative?? (Read 2818 times) |
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E-Double
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VENT: What's your Poison: Meds or Alternative??
« on: Jun 3rd, 2005, 6:16pm » |
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Wanna hijack something?.. do it here and leave people's posts of exhiliration regarding their relief alone!!!!
I wrote the samething in Joe's LSA thread.........
Quote:The fact of the matter is this.......
Other than Bare Knuckling it like many of us have done for yrs.....There is nothing we take for CH without some sort of side-effect.....
I try to be an educated consumer regarding OUR condition and have researched every medicinal and alternative treatment and honestly......I am more scared of the traditional meds that I take than the alternative treatments that I have only had experience with recreationally.
I have to get over the social aspect of it and when I am ready I will try WHATEVER appears to work for most.....
I am currently on verapamil and waiting to try lithium eventhough I know that one can die from rhenal failure when I could take a hallucinagen and risk tripping balls without relief.......
Why is that??? My choice for the moment!!!! Until I try this last med....then we will see.
You all claim to act as scientists......
I am a scientist!!!
Let your fucking data do the talking and stop fucking bickering like children or acting like warring gangs....Holy CHit....Everyone wants to be PF...
PAIN FREE!!!
No one here pushes anything other than experience and resources to gather information!!!
I thank everyone from BobP to BobW every fucking night! Flash to Jonny!!
Matters not!
All of you need to get over yourselves and just be happy that somethng worked for Joe!
VENT OVER!!! |
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Eric
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| « Last Edit: Jun 3rd, 2005, 6:20pm by E-Double » |
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I can't believe that I have to bang my
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Gonna take a breath and try again.
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LeLimey
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Re: VENT: What's your Poison: Meds or Alternative?
« Reply #2 on: Jun 3rd, 2005, 6:49pm » |
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Eric good for you!
I couldn't agree more. I have my current options but I want all my future choices to be open. I'm grateful to everyone who is trying these things out.
Its time to pull together not apart.
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E-Double
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Re: VENT: What's your Poison: Meds or Alternative?
« Reply #3 on: Jun 3rd, 2005, 6:50pm » |
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on Jun 3rd, 2005, 6:45pm, BikerBob wrote:
Bob I did not mean anything other than the possiblilty of one catching a higher level trip than what was measured or anticipated......It is possible.
I am all for it being used as a treatment and am fully aware of all of the research involved.
This statement IS NOT MEANT AS ANYTHING NEGATIVE and I do apologize if it came out that way!
Many props for all you do!
Eric
Edited to clarify my statement (with some past experience) again....
Not comparing the systematic dosing schedules of alternative treatments (which does appear in line with the way traditional medicine is taken) with recreational use, however, with one of my experiences I was the lone person to recieve the extreme magic mushroom from an eighth that friends were sharing....It was a tiny bugger that was just supposed to mellow me out and in fact sent me flying for a good 7 hrs. It was great but unintended.....So it is possible, just like any side effect from traditional meds that one is not supposed to get yet I for one will always be the 1 in 5 million stat.
Again...MUCH RESPECT!!!
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| « Last Edit: Jun 3rd, 2005, 8:18pm by E-Double » |
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Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Jonny
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Re: VENT: What's your Poison: Meds or Alternative?
« Reply #4 on: Jun 3rd, 2005, 6:54pm » |
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on Jun 3rd, 2005, 6:16pm, E-Double wrote:| Wanna hijack something?.. do it here and leave people's posts of exhiliration regarding their relief alone!!!! |
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Sorry Dude, didnt know we were not allowed to question others posts.
My bad
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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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BikerBob
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Re: VENT: What's your Poison: Meds or Alternative?
« Reply #5 on: Jun 3rd, 2005, 7:12pm » |
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There's a difference between questioning other's posts and saying "Your stats are bull-shit" (when they're facts) and exclaiming "Someones going to die!"
Bob
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E-Double
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Re: VENT: What's your Poison: Meds or Alternative?
« Reply #6 on: Jun 3rd, 2005, 7:15pm » |
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Questioning is one thing....
When people bring personal feelings (not saying you)into the equation it is no longer objective and "data driven" as everyone seems to act like they want!
That is my only gripe with a lot of the threads whether it was Kim's or now Joe's.
For all I know it will happen someday on mine.
I'm extremely neutral for I am lucky to not have been a guinea pig for half my life like so many have been.
I bare knuckled and unknowingly dealt with this until last yr.
I have no feelings other than "TOUCHY FEELY" love for all of you!
and I ain't no bitch!!!
Just a shame when respect is lost or not shown.
Respectfully,
Ex2
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Chillrmn1
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Re: VENT: What's your Poison: Meds or Alternative?
« Reply #7 on: Jun 3rd, 2005, 7:29pm » |
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First, I would like to say I'm exhilirated for Joe and his success. Had it not been for Joe's, Langa's, and a couple others sharing their experience and results, I would have not tried and found success with LSA (HBWR) myself. Without trying to talk for any of these fine folks, I do feel this was one of their reasons for posting..........to let others know what worked for them. Please, Joe and Langa correct me if I'm wrong.
Second, my poison is now alternative treatment and no longer the conventional meds available at this time. The Verapamil, Prednisone, Inderal, Lithium, Imitrex, etc., either did not relieve my symptoms, did cause uncomfortable and health risking side effects, or had to take in such large quantities and duration that, based on the producers warnings could/would cause bodily damage.
Third, I tried one dose of LSA (4 HBWR seeds) three weeks ago and have been completely pain free with no attacks or shadows to date. I do not have any other data to be construed as "scientific", only my experience and results, and was detoxed off all conventional medications for 2 1/2 months prior to dosing.
I am not pushing this on anyone, but just relating my experience. I feel debating all different treatments are healthy and a way to advance knowledge, but when insults are given and cheap shots are taken by people with hidden agendas, well..............I feel we should be above this since we're all in the same boat with this horrible disease and just trying to find relief.
VENT OVER.
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Jonny
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Re: VENT: What's your Poison: Meds or Alternative?
« Reply #8 on: Jun 3rd, 2005, 7:54pm » |
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on Jun 3rd, 2005, 7:12pm, BikerBob wrote:
Everyone dies, its just a matter of when and why....No?
Cant beat that stat 
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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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Kris_in_SJ
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Re: VENT: What's your Poison: Meds or Alternative?
« Reply #9 on: Jun 3rd, 2005, 7:54pm » |
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Wow - I've been away for a couple of weeks. Looks like I need to play a little "catch-up!"
I just think we all need to pursue what seems best for us at certain times of our lives. There might be some unwilling to try alternative treatments because they have children in the house, bad past experiences with recreational drugs, etc., etc.
Each and every day, I thank my higher power that I'm episodic and have time to absorb all the new info that appears here and at clusterbusters. I'm keeping all options open for the next time around.
Without meaning to sound like a mediator and the Libra that I am, can we all agree to disagree sometimes? Just listen to each other and learn?
Thanks for the thread Eric,
Kris
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Langa
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Re: VENT: What's your Poison: Meds or Alternative?
« Reply #10 on: Jun 3rd, 2005, 7:56pm » |
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E2 you stole my idea...I was going to start a thread like this since there's so much infighting about meds vs. alternative. 
For me, my poison is alternative...LSA seeds to be exact...
And whether people like it or not, I need to be happy about being PF - absolutely a personal choice - oh by the way, 7 weeks PF yesterday - especially when prior to that I wanted to crash into a tree I was so fucking miserable.
And i'm going to shout to the world i'm PF if it means others will have a chance to be too...
Love,
Langa
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Jonny
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Re: VENT: What's your Poison: Meds or Alternative?
« Reply #11 on: Jun 3rd, 2005, 8:28pm » |
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on Jun 3rd, 2005, 7:54pm, Kris_in_SJ wrote:| Without meaning to sound like a mediator and the Libra that I am, can we all agree to disagree sometimes? Just listen to each other and learn? |
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 .....Meaning......Nuff said!
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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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sandie99
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Re: VENT: What's your Poison: Meds or Alternative?
« Reply #12 on: Jun 4th, 2005, 4:00am » |
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on Jun 3rd, 2005, 6:49pm, LeLimey wrote:Its time to pull together not apart.
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That sounds good... 
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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karma
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Re: VENT: What's your Poison: Meds or Alternative?
« Reply #13 on: Jun 4th, 2005, 7:32am » |
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The meds. vs. alternatives question is a good and valid one. Its unfortunate that the discussion ALWAYS deteriorates into a pissing contest.
A handfull of people from both sides seem to derive great pleasure in dergrading the discussion by playing with words or short sentences and completely ignoring the intent of a reply.
When I first came here, not long ago, I brought up this very same discussion. I did it because I followed what seemed to be pretty sound advice on treatments and prevents. (Yes I did do it through a doc) The result? I got hit worse and longer than ever before. I quit the meds and soon reverted to what I was accustomed to. I read and read and soon realized that those that have CH the worst are taking the most medication. That is a FACT. Why that is, is an important question that needs to be answered.
I began to ask questions from the non traditional side of the fence and got called everything from a tree hugger to a brain dead hippy type.
Whats the moral of my story?
You can't teach and old dog new tricks and if you back it into a corner it will try and bite you.
I'd rather walk around the dogs than through them but sometimes there mighty hard to ignore.
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Chillrmn1
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Re: VENT: What's your Poison: Meds or Alternative?
« Reply #14 on: Jun 4th, 2005, 8:15am » |
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Hey BobP,
Where are you? This thread is a perfect instrument and opportunity for you to explain to us whom don't understand what your program or agenda truly is. I am confused by you. You seem very kowledgeable and sure you are, but you make certain valid statements during one post and then completely turn tables on your next and contradict the previous. Is this a bait-and-switch? Regardless of your feelings on traditional, alternative, or other treatments, you have made certain statements that may influence others away from a treatment that would have or could be effective for them when no other is.
Maybe it's just a case of not being able to articulate your thoughts appropriately, and I'll quote from your previous posts: "You guys are a really bigger bunch of morons", "I think the drivel you idiots spew", "Makes you a total A*S*S*H*O*L*E", and "Now all the touchy/feely types" for example.
This is not a personal affront on you by me and should not be construed as such. I am just asking you to clearly explain your position or agenda on these various treatments to clear up mine and others confusion with you. I've read your posts for years, although I only registered on the site last year, I'm not new here.
And BobP, I sincerely wish you relief from this disease and pain free time. Now, will you come out to play today?
Bob
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wetdogtwo
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Re: VENT: What's your Poison: Meds or Alternative?
« Reply #15 on: Jun 4th, 2005, 1:18pm » |
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My feeling is that the issue is distinguishing between hard statistical data and personal experience. The problem is, there haven't been a lot of clinical trials on alternative therapies. For those of us who are exploring this path, there isn't a lot of information available. So we look here. For me, this board is about sharing personal experiences. I'm not a doctor or scientist and I know that most people here aren't. Yet many people post their opinions as scientific evidence or dismiss other people's success stories as hogwash which leads to fiery barrages of angry posts.
I am not running clinical trials with little CH-suffering mice, but I know that I have found success with alternative therapies. I dropped some LSA and am taking kudzu. I don't know which one is working (it's my first time doing either) but I don't care because I haven't had a headache for a week and a half.
I know these herbs are drugs and have side effects, but based on my limited research, they seem safe to me. So far so good. Your results may vary.
Maybe there should be a disclaimer in the Meds section that explains to readers that they should be cautious and consult doctors, etc. Does anyone actually read disclaimers?
Anyhow, all I know is that if it weren't for this message board, my thigh would be covered in Imitrex bruises and I'd be banging my left eye while in the fetal position right about now. People sharing their experiences with all kinds of therapies helped me gauge what might be effective and within my comfort zone of experimentation. And it worked. So thank you all for sharing.
Marty
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| « Last Edit: Jun 4th, 2005, 2:15pm by wetdogtwo » |
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Jonny
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Re: VENT: What's your Poison: Meds or Alternative?
« Reply #16 on: Jun 4th, 2005, 2:30pm » |
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on Jun 4th, 2005, 8:15am, Chillrmn1 wrote:
Shhhhh...hes sleeping, you dont want to wake the big dog......he bites
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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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Marc
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Re: VENT: What's your Poison: Meds or Alternative?
« Reply #17 on: Jun 5th, 2005, 1:34am » |
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Quote:| Shhhhh...hes sleeping, you dont want to wake the big dog......he bites |
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Nahhh, he just asks a lot of questions and won't accept "fluff" and glittering generalities for answers. Besides, who else can get otherwise sane and rational people to start acting like screaming lunatics so darn quickly?
It's just that some folks don't recognize the difference between a foil and a broadsword – or perhaps, when to use which.....
Marc
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karma
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Re: VENT: What's your Poison: Meds or Alternative?
« Reply #18 on: Jun 5th, 2005, 8:23am » |
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Quote:| A handfull of people from both sides seem to derive great pleasure in dergrading the discussion by playing with words or short sentences and completely ignoring the intent of a reply. |
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This isn't about one person.
There is a predictable lack of participation from the antoginists on this thread.
Not really surprising is it?
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Jonny
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Re: VENT: What's your Poison: Meds or Alternative?
« Reply #19 on: Jun 5th, 2005, 10:04am » |
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on Jun 5th, 2005, 8:23am, karma wrote:There is a predictable lack of participation from the antoginists on this thread.
Not really surprising is it? |
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YEAH!!!.....Those Bastards!
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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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Candycane
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Re: VENT: What's your Poison: Meds or Alternative?
« Reply #20 on: Jun 5th, 2005, 6:35pm » |
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Mine is also the alternative, WHY? Because it worked.
I find it all kinda funny sometimes here reading everyone fighting back and forth since we are all in the same place? But we do live in the good old USA
Still PF by the way 
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lionsound
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Re: VENT: What's your Poison: Meds or Alternative?
« Reply #21 on: Jun 5th, 2005, 7:27pm » |
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Bravo, EE !!!!!
TO ME a drug, is a drug, is a drug, from scripted meds to alternatives to natural remedies to vitamins to alcohol, caffeine and nicotine. Anything can interact with anything else and cause side effects and we'd better be careful and we'd better informed no matter what we dare to try.
Everyone has their own personal road to Pain Free Happiness. How they arrive or attempt to arrive in the PF zone is their choice entirely.
I don't know about everyone else, but part of my treatment plan is support....ch.com and the friends I've made here are directly responsible for me feeling better even when I feel like crap.
Be well and PF,
Rori
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E-Double
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Re: VENT: What's your Poison: Meds or Alternative?
« Reply #22 on: Jun 5th, 2005, 7:35pm » |
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on Jun 5th, 2005, 7:27pm, lionsound wrote: I don't know about everyone else, but part of my treatment plan is support....ch.com and the friends I've made here are directly responsible for me feeling better even when I feel like crap.
Be well and PF,
Rori
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That's what I'm talking about!!!!
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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burnt-toast
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Re: VENT: What's your Poison: Meds or Alternative?
« Reply #23 on: Jun 5th, 2005, 11:29pm » |
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Facing the facts of this lifestyle disaster we all live, there is basically nothing to treat CH that was specifically developed to treat CH. We are simply too low a sample of humanity to spend a lot of resources on. GOD, some neurologists still haven't even a clue about this condition.
Our current lot in life is to accept second hand cast off meds., alternative treatments and surgeries that work for some but not for all - Treatments developed to treat someting else but somehow used in treating us.
Hopefully through this site a few lucky folk find someting that ends up working for them.
Meds, Alternatives, Surgery = no difference, the truth be told relief, no matter how obtained would be sweet.
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Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space.
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Pinkfloyd
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Re: VENT: What's your Poison: Meds or Alternative?
« Reply #24 on: Jun 6th, 2005, 12:27pm » |
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on Jun 6th, 2005, 11:19am, Bob P wrote:Thanks Pink.
DOI
ACP-103
Agmatine
No sense re-inventing the wheel. |
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Thanks Bob. So I guess you have all the answers to your questions then. I might as well close up shop.
You seem to have missed a couple of my questions though...wanna give it a shot?
on Jun 6th, 2005, 10:45am, Pinkfloyd wrote:
1.Why give him advice that will give him less of a chance to end his pain?
2.To make you happy?
3.At what point would you suggest we begin using what we've learned?
4. Would you like to donate to the fund or do you want everyone else to pay to find the answers to your questions?
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When you're done answering MY questions for a change, maybe you should read the selection criteria for ACP-103 and ask yourself why some of them regarding the patients recent medications exist.
Now, if you'll excuse me, I'm going to get back to researching treatments for cluster headaches.
thanks in advance for your answers
Bobw
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"Nothing is so firmly believed as what we least know."
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