blueballs Posted April 2, 2012 Share Posted April 2, 2012 Hey all my fellow bangers. We should talk about this further. It is critical to our common cause to present this information in a proper fashion to doctors, Pcp's, neuro's, and other medical people. Perhaps if we have more discussion regarding this we would be more successful in getting a positive response from them.? We would be taking it to them and have support from more people in the right places I think..???maybe ??? yes??? no??? bb Quote Link to comment Share on other sites More sharing options...
Bonkers Posted April 2, 2012 Share Posted April 2, 2012 Let's not forget that the substances we're dealing with here are way illegal. The professionals you speak of could lose their licenses if they were to condone what we're doing. Quote Link to comment Share on other sites More sharing options...
blueballs Posted April 2, 2012 Author Share Posted April 2, 2012 Nothing illegal about talking. Good point though. That would mean we should use discrection when presenting this option for treatment. I would not expect them to condone or participate,as you point out they have a license to protect. In the interest of honesty and proper health care it would not be prudent to lie to them. I believe proper health care demands honesty with your neuro...they are treating you traditionally and I am experimenting with a non-traditional treatement. That may or may not conflict. I think we can come up with a proper way to present busting without skirting legal, and ethical boundry's. Now were cooking Ow,ow,ow, this sucks. > bb Quote Link to comment Share on other sites More sharing options...
spiny Posted April 2, 2012 Share Posted April 2, 2012 Mine had a cardiac when I told him I was huffing welding O2 at 25LPM! But, he was open to listening when I told him that I had joined a Cluster Headache Site and was talking about what prescribed meds worked and what did not and ALL the side effects from these sucky meds! Even gave me a list of possible meds to try next to present to the board for feedback. He actually seemed to be glad that I had reached out and contacted a whole community of fellow sufferers and didn't feel so isolated anymore. It probably took some of the heat off for him as well. He treats many neurological diseases, not just headaches, so his expertise is not at 100% (if there is such a thing) in the CH department. Baby steps for him and me seem to be working well. Besides, he did save my life from carbarzipine (sp?) toxicity several years ago. Quote Link to comment Share on other sites More sharing options...
Psiloscribe Posted April 3, 2012 Share Posted April 3, 2012 I also feel that if we get our doctors or other researchers to check out our site -Ricardo Not only DO they check out our site but some of the most distinguished doctors and researchers, some of which you constantly quote as doing great work, helped write the pages on the site. I will make this suggestion one more time. Cut and paste into an email to me, the portions you have a problem with. Then, with each section, give me details, links and site specific information that will substantiate your suggestions. We will then present the changes to experts in the field and make any necessary changes. P.S. The warning sections were written by probably THE foremost expert on psychedelics and safety issues and has written countless safety protocols for clinical trials. Complete enough for the FDA and DEA. All that said....I'm happy to hear your thoughts, when you back them up with attributed facts. Bobw Quote Link to comment Share on other sites More sharing options...
MJ Posted April 3, 2012 Share Posted April 3, 2012 I would consider myself negligent in not mentioning the use of CB methods to my doctors. After all if they were to prescribe another drug that may have dangerous consequences mixing with physcedelics, would you feel better or worse in the hospital knowing you and a doc could have avoided problems via simple discussion. I would think it rare that an educated doc would diss us over finding relief. It may not be something they could openly prescribe, but with proper presentation I think a good many docs would show great interest and even learn further. In actuality I suspect far more medical persons are aware of our methods than most would think, thanks to the educational efforts put forth from here . And what better place to start than the cluster busters sites for honest unbiased information and testimonials. Quote Link to comment Share on other sites More sharing options...
Psiloscribe Posted April 3, 2012 Share Posted April 3, 2012 I would think it rare that an educated doc would diss us over finding relief. It may not be something they could openly prescribe, but with proper presentation I think a good many docs would show great interest and even learn further. In actuality I suspect far more medical persons are aware of our methods than most would think, thanks to the educational efforts put forth from here . And what better place to start than the cluster busters sites for honest unbiased information and testimonials. You are correct and it is rare. Especially if people bring in a research paper to begin the discussion. In our case series, even as long ago as that was, we found that doctors even went to the length of putting down their pens and not entering the conversations into the medical records to protect the patient. In other cases they would be more inclined to write down such things to protect themselves. One thing that was more evident than ever in DC was the frustration that all of our doctors feel, in not having things that actually help us combat this pain. Bob Quote Link to comment Share on other sites More sharing options...
Psiloscribe Posted April 3, 2012 Share Posted April 3, 2012 [I will make this suggestion one more time Bob, whenever you get around to writing me back concerning the PM I already sent you, I guess we can start having this conversation. If for some reason you did not get my PM, let me know and I will write you again. -Ricardo I got your PM when I was in DC, running through the halls of Congress working for ALL cluster sufferers and people with all sorts of headache disorders. Inspired to do so by the others that went along, most of which were in the middle of bad cycles. There appeared to be nothing to respond to. At least nothing that needed an immediate response. The only discussion on this matter should be how to specifically improve the website and in that matter, there should not be a need to intervene. The post that you just quoted from explained how I felt it best to proceed and we could move forward. In essence answering parts of your PM in public so everyone knew the best way to help us improve our product. This same post should have answered anything else in your PM that needed answering. It set forth a few guidelines that everyone can use to help us. Other than waiting for the promised constructive comments about the website that you said you would send to me, in the PM, it appeared to me that the next response would be coming from you, in the form of constructive, factual suggestions for updates. peace~out Bob Quote Link to comment Share on other sites More sharing options...
blueballs Posted April 7, 2012 Author Share Posted April 7, 2012 Back from the ER....again. They all know me fairly well and the nurse mentioned her father has CH. We discussed how individual symtoms can be, and began a conversation relative to treatments...once I had my cognition back in place. The doctor on duty whom I know asked what else would work to help as the first shot of trex failed. My wife mentioned the case series Bob spoke of and our participation. It does help immensely to: Know the professional you tell this to. Have some judge of their character prior to discussion. Give them access to medical documentation in place.They should have some background on you so as not to label you due to the social stygma attached to these substances. 8-) Bangeth thy headeth. blueballs Quote Link to comment Share on other sites More sharing options...
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