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Topic: Brain surgery or a cup of tea? hmmm I cant d (Read 1815 times) |
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van101
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Brain surgery or a cup of tea? hmmm I cant d
« on: Oct 3rd, 2007, 11:20pm » |
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Ok people settle down, this aint rocket surgery...
You know what works for you and that is all that matters. If it is a placebo effect then great.
to those who are on the fence....
Good luck finding any clinical study that suggests a minimum 50% placebo effect.
Response of cluster headache to psilocybin and LSD
R. Andrew Sewell, John H. Halpern and Harrison G. Pope, Jr
Abstract—The authors interviewed 53 cluster headache patients who had used psilocybin or lysergic acid diethylamide (LSD) to treat their condition. Twenty-two of 26 psilocybin users reported that psilocybin aborted attacks; 25 of 48 psilocybin users and 7 of 8 LSD users reported cluster period termination; 18 of 19 psilocybin users and 4 of 5 LSD users reported remission period extension. Research on the effects of psilocybin and LSD on cluster headache may be warranted.
This information is current as of August 3, 2007
Ill bet my last dollar that if a clinical study were done using chronic CH sufferers, the placebo effect would be <1%.
The Surgery is a last resort radical attempt to bring some relief to CH sufferers.
So before letting a scalpel wielding skeptic, who obviously has not done his research, cut into your brain... brew a cup of shroom tea (as per clusterbusters recommended dosage) sit on your couch and giggle for a few hours. Only then can you decide if this treatment can help you.
Just for fun, heres is a multiple choice question:
Imagine you have the most excruciating pain of your life in your head. One of the following choices might help. Which do you choose first?
A. a cup of Ps. shroom tea
B. Brain surgery
it aint rocket surgery...
Van
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Beastfodder
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Re: Brain surgery or a cup of tea? hmmm I ca
« Reply #1 on: Oct 4th, 2007, 4:54am » |
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With you on this one all the way.
Albert Hoffmann first synthesised LSD as part of research for a pharmaceutical company but had no idea what his 'problem child' would lead into with its adoption by youth culture.
Through the 50s and 60s it was extensively tested in a range of clinical applications with no evidence whatsoever of long term harm. As the evidence grows for the role it and associated relatives such as RC/HBR seeds and mushrooms plays in CH the problem is that there's a scarcity of funding from the pharma industry as a whole.
Not to mention the stigma of being seen to dance with the devil, especially when there are more profitable avenues of patenting various triptans for the Global market.
Through clusterbusters an immense amount of work's been done on incredibly tight budgets leading to treatments that are virtually free from the psychedelic side effects associated with hallucinogens. Not to mention those who post here on the long term benefits they receive from alternatives.
Brain surgery and associated techniques of stimulation obviously have a role to play in deep rooted chronic sufferers - but only after all else has failed. But given from what I've seen are unconvincing long term tests, coupled with the cost of the procedure you've got to be open minded to alternatives.
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clusterwife
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Re: Brain surgery or a cup of tea? hmmm I cant d
« Reply #2 on: Oct 6th, 2007, 9:16pm » |
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Hmmmmm, how about, Having surgery to kill the nerves of the affected side or killing yourself? Easy one there!!!
Leah
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Kevin_M
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Re: Brain surgery or a cup of tea? hmmm I cant d
« Reply #3 on: Oct 6th, 2007, 9:46pm » |
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on Oct 6th, 2007, 9:16pm, clusterwife wrote:
How about those being neither as an option when this and an alternative site is thoroughly read.
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Jill
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Re: Brain surgery or a cup of tea? hmmm I ca
« Reply #4 on: Oct 7th, 2007, 8:23am » |
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Hi...
How about you guys NOT be like that about surgery and automatically assume that it is the worst possible surgery. It seems to me that none of you are updated on the latest approaches or why people get it.
I have had two surgeries in the last year and neither one of them involved digging into my brain or killing any nerves. Both were nerve stimulators that are being studied on cluster headaches and are being found to work.
Maybe I am not the best example of this since it didnt work for me but my clusters arent ''normal'' or easy to treat. I have not found a preventative or a good abortive so surgery was an option. And I would do it again, if I had to do it over again because the chance was there of relief.
Not everyone can try shrooms or LSA seeds - dont forget that shrooms arent legal. Some people have to turn to surgery to even think about getting relief and when we are chronic, getting hit ever two hours than that is a real possibility.
People come to this site for advice and support, try not to knock what you havent tried and dont know much about. That is all that I ask.
Jill
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"If you learn from your suffering and really come to understand the lesson you were taught you might be able to help someone else who is now in the phase. Maybe that is what its all about after all.."
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Kevin_M
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Re: Brain surgery or a cup of tea? hmmm I ca
« Reply #5 on: Oct 7th, 2007, 9:35am » |
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on Oct 7th, 2007, 8:23am, Jill wrote:Maybe I am not the best example of this since it didnt work for me but my clusters arent ''normal'' or easy to treat.
People come to this site for advice and support, try not to knock what you havent tried and dont know much about. That is all that I ask. |
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Some comments are based on the emboldened being not unusual as opposed to not knowing because it wasn't tried.
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Jill
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Re: Brain surgery or a cup of tea? hmmm I ca
« Reply #6 on: Oct 7th, 2007, 9:44am » |
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Kevin-
I am not sure what you mean, sorry.
All I meant is that everytime that someone comes to the board with questions about surgical approaches, everyone knocks it.
It is like saying that narcotics dont work at all for CH, for some people they do. Just because oxygen doesnt work for everyone doesnt mean that people should say that it doesnt work at all. Or because it does work on most, no one should say that oxygen works for every person and aborts every headaches.
The one common thing (and I am sure there is others) is that what works for one person doesnt work for another. Does that make sense?
My head is hurting right now so I am not sure if what I am saying makes much sense.
Surgery is not an easy option and not something to look lightly at, that is a given. But they are doing more and more studies on nerve stimulators which start out as temporary and cause no nerve damage. I just think that people (me included) have to know all of the facts before they make jokes and make it seem like a stupid decision to have the surgery.
And doing shrooms or LSA seeds is not an easy decision either. I have tried the LSA seeds but not the shrooms, they scare me. There is alot to consider when exploring both options
That is all that I meant and that is just my opinion. Take it or leave it.
Jill
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| « Last Edit: Oct 7th, 2007, 9:46am by Jill » |
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"If you learn from your suffering and really come to understand the lesson you were taught you might be able to help someone else who is now in the phase. Maybe that is what its all about after all.."
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Kevin_M
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Re: Brain surgery or a cup of tea? hmmm I ca
« Reply #7 on: Oct 7th, 2007, 10:12am » |
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on Oct 7th, 2007, 9:44am, Jill wrote:| I just think that people (me included) have to know all of the facts before they make jokes and make it seem like a stupid decision to have the surgery. |
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No joke to say it is not unusual to be unsuccessful over time.
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Jill
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Re: Brain surgery or a cup of tea? hmmm I ca
« Reply #8 on: Oct 7th, 2007, 10:30am » |
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on Oct 7th, 2007, 10:12am, Kevin_M wrote:| No joke to say it is not unusual to be unsuccessful over time. |
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How do you know that it is going to be unsuccessful overtime? Have you had experience with these surgeries? Is there research to back that up?
From what I know and have learned from my neurologist, these studies are in the newer phases and are proving to be effective for some with CH.
Does that mean that everyone should go out and do it? No but for those like me that are chronic, have found nothing else to be helpful and get hit too hard and too often to work and sometimes even function, it is a possibility.
Who knows what is in the future, arent we supposed to look at all the options?
Jill
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"If you learn from your suffering and really come to understand the lesson you were taught you might be able to help someone else who is now in the phase. Maybe that is what its all about after all.."
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andrewjb
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Re: Brain surgery or a cup of tea? hmmm I ca
« Reply #9 on: Oct 7th, 2007, 10:38am » |
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on Oct 7th, 2007, 10:30am, Jill wrote:
Who knows what is in the future, arent we supposed to look at all the options?
Jill |
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 , there it is in a nutshell realy. andrew.
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Kevin_M
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Re: Brain surgery or a cup of tea? hmmm I ca
« Reply #10 on: Oct 7th, 2007, 10:38am » |
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on Oct 7th, 2007, 10:30am, Jill wrote:| How do you know that it is going to be unsuccessful overtime? Have you had experience with these surgeries? Is there research to back that up? |
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Quote:| Maybe I am not the best example of this since it didnt work for me... |
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Do you think you are the first or only to post this here?
And I said it is "not unusual".
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Jill
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Re: Brain surgery or a cup of tea? hmmm I ca
« Reply #11 on: Oct 7th, 2007, 11:00am » |
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on Oct 7th, 2007, 10:38am, Kevin_M wrote:Do you think you are the first or only to post this here? And I said it is "not unusual".
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I didnt say that I was the first to post about surgery here and I am not in anyway saying that this is a ''cure all'' for anyone. I am not selling anything and I am not telling people that, 'hey you should go out and try this.'
All I am asking is that people not jump to conclusions or automatically say that something is wrong or bad or stupid when it is a legitimate option for some.
I am sorry that you dont see that. And I apologize if I in anyway misunderstood you. When you said that it is not unusual that it that it be unsuccessful overtime, that said to me that you dont think that it will work. Is that wrong?
No one knows if this will be successful in the long run, no one. How could you know if it is going to work or not?
Just try not to judge people for what they are willing to try or not try.
Jill
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"If you learn from your suffering and really come to understand the lesson you were taught you might be able to help someone else who is now in the phase. Maybe that is what its all about after all.."
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Annette
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Re: Brain surgery or a cup of tea? hmmm I cant d
« Reply #12 on: Oct 7th, 2007, 11:14am » |
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Hello Jill
I am interested in learning more about the surgery you are talking about, especially from a person who has personally been through it.
Would you be able to share with us exactly what type of surgery you had done and how it was done, plus your personal experiences with the procedure please?
Thank you very much.
Annette
PS: I dont think Kevin is rubbishing your choice of treatment, he was simply commenting that there are other options to consider than just either surgery to kill the nerves or to kill oneself, as posted by Leah.
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Kevin_M
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Re: Brain surgery or a cup of tea? hmmm I ca
« Reply #13 on: Oct 7th, 2007, 11:16am » |
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on Oct 7th, 2007, 11:00am, Jill wrote:| I didnt say that I was the first to post about surgery here and I am not in anyway saying that this is a ''cure-all'' for anyone. I am not selling anything and I am not telling people that, 'hey you should go out and try this.' |
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I don't recall you saying you were the first to post about surgery here, in fact referred to the opposite. Nope, no mention of cure all either, that wasn't mentioned in any of my posts or any selling either. All needless to be said.
You asked for any research but I would think you'd already have loads of links that would have been posted in your first reply here obtained prior to your procedure. There are threads with links about it here, feel free to explore what this site has provided for all over time.
Perhaps the name and intent of this thread eluded you.
Quote:| Brain surgery or a cup of tea? hmmm I ca |
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The ending can be reasonably imagined. I understand your inhibition about the other option referred to, but I think results are visibly posted to examine and determine for consideration anyway.
Aren't these your words?
Quote:| Who knows what is in the future, arent we supposed to look at all the options? |
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| « Last Edit: Oct 7th, 2007, 11:53am by Kevin_M » |
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Jill
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Re: Brain surgery or a cup of tea? hmmm I ca
« Reply #14 on: Oct 7th, 2007, 12:09pm » |
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I am sorry but I am having a hard time understanding what exactly your point is. Maybe it is because I just hurt and cant focus. Who knows... 
I didnt post links of my research because I wasnt 'selling' anything or telling anyone that is the route to take. The whole point in what I wrote was to ask people not to jump to conclusions.
I did get the jist of this thread - it seems that it says that it is so much wiser to chose to do shrooms than to do any kind of surgery. There was no real reason to start it, that is my thought anyway.
I am in no way against trying shrooms nor anything else that people want to try. I know the desperation in trying anything, I have been there and am there many days. I think that you have totally missed my point which is fine.
The is the last that I will write to you right now, I have stated my opinion - do with it whatever you want. My goal isnt to argue with you or have a debate, it is to help people who are looking for other options. Just as shrooms might be an option for one person, surgery might be for another - that is their decision.
The board is to help people, not make them feel stupid for the options that they look for. That is my point.
I hope that this made some sense.
Jill
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"If you learn from your suffering and really come to understand the lesson you were taught you might be able to help someone else who is now in the phase. Maybe that is what its all about after all.."
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Annette
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Re: Brain surgery or a cup of tea? hmmm I cant d
« Reply #15 on: Oct 7th, 2007, 12:14pm » |
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Sorry you are hurting Jill .
I hope you get a break soon and will be in a better mood to share with us your experiences with surgery.
Painfree wishes to you.
Annette
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Kevin_M
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Re: Brain surgery or a cup of tea? hmmm I ca
« Reply #16 on: Oct 7th, 2007, 12:18pm » |
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Quote:| I hope that this made some sense. |
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on Oct 7th, 2007, 12:09pm, Jill wrote:| I am in no way against trying shrooms nor anything else that people want to try. |
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Yes, it made sense because you now may understand that people may feel the same way about surgery as opposed to "actually having the experience" of reading the clusterbusters site fully or realizing its benefit.
No argument here, Jill.
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Jill
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Re: Brain surgery or a cup of tea? hmmm I ca
« Reply #17 on: Oct 7th, 2007, 1:15pm » |
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on Oct 7th, 2007, 12:14pm, Lotus wrote:| I hope you get a break soon and will be in a better mood to share with us your experiences with surgery. |
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Hi Annette,
I am not in a bad mood, sorry if I came across that way. It has just been a very rough day.
What would you like to know about the surgeries? I can give you the basics on it, feel free to ask me any questions.
The first surgery that I had done was called an occipital nerve stimulator - they put two probes into the nerves in the back of the head. They did it on both sides even though my clusters are on the left so that they wouldnt switch sides. The second surgery was a super-orbital nerve stimulator and with that one the put a probe above my right eyebrow.
Both surgeries were trials, I had the probes in for a week and looked life a goof because I had wires (big wires) coming out of my head and into a little box that controlled the settings. With the permanant stimulator, you dont see the probe or the wires, it all goes under the skin with the biggest part being the battery pack. They told me that it isnt noticeable, more like having a pacemaker under the skin.
The idea is to cause stimulation to the nerves, the amount of which I controlled. They gave me four programs to play around with which moved the stimulation around a bit and it allowed me to control the amount.
The sensation was a little weird, kind like a bee buzzing under the skin of your head. Given time, one can adjust to this sensation without a problem. Unfortunatly for me, the second surgery helped reduce my pain like five percent which wasnt enough for me to be considered for the permanent one. I have heard though that it takes about six months to notice the full effect and the percentage of improvement after that time is higher.
This, having the surgeries, was not an easy decision to make and there is alot to take into account when you are considering the permanent one. I have decided that it didnt help enough to have it done permanently right now, it is still in consideration though.
I hope that this made some sense. If you have any questions, feel free to ask me.
And, Kevin, it seems that we were pretty much on the same page. People can make their decisions based on the information that they find. There is the good and bad with everything.
Jill
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"If you learn from your suffering and really come to understand the lesson you were taught you might be able to help someone else who is now in the phase. Maybe that is what its all about after all.."
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Kevin_M
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Re: Brain surgery or a cup of tea? hmmm I ca
« Reply #18 on: Oct 7th, 2007, 1:28pm » |
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on Oct 7th, 2007, 1:15pm, Jill wrote:| And, Kevin, it seems that we were pretty much on the same page. People can make their decisions based on the information that they find. There is the good and bad with everything. |
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I will agree Jill, but have noticed by extremely far, more effective testimony to the clusterbusters method, better study results, and being a much safer method. I simply preferred to be of that opinion on the matter being their site is extremely well managed and carefully considerate in all aspects of people coming to them because of CH.
I only hope also you can somehow not be a subjected to the capabilities of CH.
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| « Last Edit: Oct 7th, 2007, 1:34pm by Kevin_M » |
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Jill
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Re: Brain surgery or a cup of tea? hmmm I ca
« Reply #19 on: Oct 7th, 2007, 1:55pm » |
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I understand Kevin - they do have a good site with lots of information. But it has taken some time for them to get where they are. Maybe in time other approaches will also be studied as much.
I wish that there was more information on clusters out there and that more research was being done to find a cause and a cure. But wishes wont get me far. Right now we all do what we can.
[quote author=Kevin_M link=board=meds;num=1191468051;start=0#18 date=10/07/07 at 13:28:50]I only hope also you can somehow not be a subjected to the capabilities of CH. /quote]
What do you mean? I am chronic and have been for the past five and a half years. I know the capabilities of clusters. Meaning that I know what they do to a person on both the physical and mental level - they have taken alot away from me. And I hate it.
Jill
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| « Last Edit: Oct 7th, 2007, 1:56pm by Jill » |
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"If you learn from your suffering and really come to understand the lesson you were taught you might be able to help someone else who is now in the phase. Maybe that is what its all about after all.."
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Kevin_M
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Re: Brain surgery or a cup of tea? hmmm I ca
« Reply #20 on: Oct 7th, 2007, 2:55pm » |
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on Oct 7th, 2007, 1:55pm, Jill wrote:| But it has taken some time for them to get where they are. |
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Agreeably Jill, in big part due to the perception of the method. Taken time, but quite patiently, thoroughly, and successfully.
Quote:| I am chronic and have been for the past five and a half years. I know the capabilities of clusters. Meaning that I know what they do to a person on both the physical and mental level - they have taken alot away from me. And I hate it. |
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Chronic here too and aware of the levels mentioned. Within the capabilities also are what they take away. That is a part of what this site helps with also.
If you read the tagline of some, such as "Never postpone life for fear of CH", among others coping also, you will know to be among a very similar minded. Hating it is a part and so options that are effective are a shared importance. Wanting to share ways effective to live life fully despite CH with management techniques acquired here is so much a part.
Sharing and helping with the struggle improving life is challenging with CH but I hope you stick around and use the vast resources of so many to inquire and expand.
Quote:| I wish that there was more information on clusters out there and that more research was being done to find a cause and a cure. |
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On the left, one of the options is O.U.C.H., our organization at the forefront of advocasy and with the best compilation of research and study of CH. Navigate there also, although a cure would not be there. Ideas on causes are being done but we are a small crowd comparatively and though much is being done, there remains a certain cloudiness, and understandably research money cannot be easily attained. But check out the link and there is accumulated knowledgable experience here.
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| « Last Edit: Oct 7th, 2007, 3:38pm by Kevin_M » |
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van101
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Re: Brain surgery or a cup of tea? hmmm I ca
« Reply #21 on: Oct 7th, 2007, 3:31pm » |
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on Oct 7th, 2007, 9:44am, Jill wrote:
And doing shrooms or LSA seeds is not an easy decision either. I have tried the LSA seeds but not the shrooms, they scare me.
Jill |
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Jill This statement really surprises me. People have used shrooms for thousands of years for all sorts of reasons with widely varying doses depending on the desired effect.
The Clusterbusters.com recommended dose is less than the recreational dose, approximately 1 gram of dried Ps. mushroom. Potency can vary so being careful is a good idea, like starting with 1/2 or 1/4 of a gram and waiting 20-60 minutes before using the the other 1/2 or another 1/4.
Dr.Sewell told me some people sip the tea (of one gram) all day. He also told me that if people do not get results from one dose after 5 days they should try another of the same amount. And then if necessary a third of the same amount. He said some people try a larger dose the third time, and get good results, but he felt it was unnecessary to increase the dose and they probably would have had the same result from a third dose of the same 1 gram.
What can you expect? after about 30-60 minutes a feeling i have described as a one beer buzz on a empty stomach, then a few hours of laughing or giggling and finding things to be funny, even if they are not, and maybe some intense colors. Cluster sufferers may experience some shadows during dosing and possibly a hungover feeling the next day. As I understand both of these symptoms are an indication that the dose is working.
There is much more to know before trying a dose, so go to clusterbusters.com and do your research and read about others experiences. There are many people there who have achieved incredible results from one dose and once monthly for maintenance.
It might not work, but as little as one dose can work and gives many people pain free days and weeks.
I believe your fear is of the unknown.
Good luck and PF wishes
Van
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Jill
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Re: Brain surgery or a cup of tea? hmmm I ca
« Reply #22 on: Oct 7th, 2007, 4:17pm » |
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Kevin...
I have been on this board for sometime now and I know how it works. I have read what is said about clusters, I have listened to what people have tried and I have tried just about everything that has been suggested. I have tried everything but the shrooms.
There is research being done but not much and I know that that is because we are such a small group. I was wishing that there was more done and more awareness out there. Maybe in time.
I also know what it is like to live with chronic CH and sometimes it isnt as ''simple'' to just get on with life. I get hit just about every two hours with nothing lower than a KIP 8. I have no known good abortive and nothing has worked for me. I have had to stop schooling, stop working and just try to make it through every day. It is impossible for me to hold a steady job right now, it takes all that I have to get through the day.
I am not trying to whine here though it might sound that way. I know that people live with being chronic and work but I have also noticed that these same people have a preventative and/or an abortive that works. That makes all of the difference. This is just my history though and my situation, we are all different and we deal with this differently.
Quote:| I believe your fear is of the unknown. |
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Van,
My fear is not of the unknown, there is more to it than that.
I understand that many people have had good, great, results with shrooms. I have read the clusterbusters website. I also realize that shrooms are not legal and that there are risks to be associated with it. I have to weigh those risks in my life. I have no place to try shrooms, I will not bring them into my moms house when I stay there or my aunts house when I stay there. And I will not bring them into my own home and put at risk those that live with me.
This is just my decision though, others make decisions based on their life. I am happy that people have had this work, good for them. Me - I am hesitant. Right now, I will deal with the tools that I have and go from there.
I hope that this, again, makes sense. All in all, I have my reasons for not wanting to try shrooms and I havent said all of them here. But know I will never knock anyone who does them just as I would hope that no one will knock me for what I do.
Thank you though for the information.
Jill
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"If you learn from your suffering and really come to understand the lesson you were taught you might be able to help someone else who is now in the phase. Maybe that is what its all about after all.."
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Jonny
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Give me a shovel Ill dig my own grave!
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Re: Brain surgery or a cup of tea? hmmm I cant d
« Reply #23 on: Oct 7th, 2007, 4:31pm » |
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Things that make you go.....Hmmmmmm! 
Quote: Username: van101 Picture/Text
Name: van101
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Date Registered: Jan 4th, 2007, 11:57am
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Quote:Username: Van Picture/Text
Name: Van
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Position: New Board Newbie
Date Registered: Oct 5th, 2007, 7:30am
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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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van101
New Board Newbie
I love YaBB 1G - SP1!
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Re: Brain surgery or a cup of tea? hmmm I cant d
« Reply #24 on: Oct 7th, 2007, 4:51pm » |
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on Oct 7th, 2007, 4:31pm, Jonny wrote:Things that make you go.....Hmmmmmm!
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LOL and I was called a troll, or maybe jon has a point?
V
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