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Anyone's doctor on board about busting?


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     I'm just wondering if any of you have mentioned the clusterbuster methods to your doctors and what their reactions were?

     My GP immediately said "I'm not going to discuss anything illegal with you."

    My former neuro said, "you've got to be kidding me? Are you crazy?" I showed him some stuff about psychedelics for treating CH and it went straight in the trash, right then and there!

    My current neuro said, "I haven't heard much about it, but I will look into it." I haven't heard anything about it from him since then, but whenever I bring it up he changes the subject.

    In short, no doctor I know of (except maybe the MAPS docs and some in Europa) seems willing to really even discuss or think about the potential for the use of these "non-pharmaceuticals". I mean, I know they can't prescribe shrooms or LSD here in the US, but not even showing interest or a willingness to the possibilities is just plain discouraging and disheartening! :'(

    

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yea....I'm afraid of bringing it up. I gotta a checkup in September, and I just started busting. If my CH stay how they are because of this medicine, I won't need "his" medicine.

Should you even talk to your doc bout it?

To answer your question, I haven't spoken about it to a doc.

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yea....I'm afraid of bringing it up. I gotta a checkup in September, and I just started busting. If my CH stay how they are because of this medicine, I won't need "his" medicine.

Should you even talk to your doc bout it?

        I can't answer that question, I have no idea if they put your asking in the chart, or are legally required to report it to the "authorities". Who knows, maybe I'm on some list somewhere ....

       But I figure the more these guys hear about this method, they may start really looking into it, seeing what they can do, etc. I figure maybe it would go like this:

      Dr. Smith: "Dr. Jones, have you ever heard of psychedelics being used to treat cluster headaches? I have a patient who mentioned it and gave me some literature about it."

      Dr. Jones: "You know, I did have a patient ask about it. He told me Harvard Medical School had done some research on it. I checked, and they did, and reported some success with it. There was also a study in Europe with a non-hallucinogenic drug, BOL, that showed great results."

      Dr. Smith: "hmmmm. Maybe we should ask our colleagues at the next headache conference? I thought my guy was just some hippie nut job."

      Dr. Jones: "I bet he wasn't."

      The point being, the more we can get the medical community to be aware of these "busting" methods and "real" research that has been done, the more likely it is there will be more thought, research, trials, and the sooner a "legitimate" treatment with these things will be available to those of us for whom many of the other mainstream meds don't work.

       But for the record, fear is the main thing keeping me from trying "busting".

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Great question!  This is gonna be an interesting thread.  I dont have a doc so cant answer the question.  However, contemplating telling my shrink (county shrink, based on pay scale), since she is the one that gave me Topamax for my CH. I have no idea what direction that will go when I tell her I quit taking it.  Think I will tell her indirectly.

Rock

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I have told my doctor/doctors from the beginning what I was using in place of Topamax, triptans, and beta blockers.

The usual response has been, " is it working"?

Then the questions start. How much? How often? Where did you find out about this?

I think any doctor that really cares about you and your pain should be interested. If they aren't happy about you getting some relief from the pain, then it is time to find a new doctor.

After all it is your hard earned money, that pays for the doctor's visit. The doctor is employed by you. If the doctor doesn't listen or care then fire him/her.

I believe you sign a patients privacy act or something like that, so it's not likely that you will be on the 6 o'clock news, because you take a magic mushroom for an headache.

I also feel it is important to spread the word. I know I bore people to death telling them about my clusters and the treatment. It's just so hard to keep quiet about something so exciting.       Leslie

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After mentioning the molecular structure of indole rings and the commonality with sumatriptan, I find most doctors comprehend the logical link instantly. I also find doctors in foreign countries are much more open to alternative and homeopathic treatments than doctors in the U.S.   

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I don't think I was busting at my last physical yet, but my next one I will definitely tell my GP about the methods.  Haven't used any of their medicines so he won't really be attached to the way I treat it.  They do need some education on the matter since they will most likely have more CH patients throughout their career.

I tell my emergency room doctor friend all about it.  Don't really know what she thinks??  I agree with a lot of ya'll that the more we talk to people about this the more accepted it will eventually become.  The delivery of that conversation is obviously important.  People have a very rigid perception of certain plants and fungus.  I used to too.

--The Shaggy

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I told my neurologist early on, years ago.  He seemed genuinely surprised, but said, "If it's working for you, go for it."

He later spoke at the Third Annual Clusterbusters Conference in Atlanta a couple of years ago.  He presented on a physician's perspective in dealing with CH.

I think he also stayed for every other speaker there.  To say he was impressed is putting it mildly.  But later admitted that his hands were tied as far as recommending the alternatives go.  He could lose his license. 

I told him that I was available at any time, should he want to refer someone.  It seems to be working out great. 

He actually credits me with saving one young man's life.  But as I told him, such credit should go Bob Wold.  Without him and others, I would still be in daily pain and unable to help anyone.

bb

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I believe you sign a patients privacy act or something like that, so it's not likely that you will be on the 6 o'clock news, because you take a magic mushroom for an headache.       Leslie

Leslie,

     I think you're referring to "HIPAA" and its "Privacy Act". A patient has to give signed authorization for the release of his or her medical records. There are some exceptions - one is a "law enforcement investigation of criminal activity", and in those cases the law enforcement people can require that the docs do not tell you, even if you ask for all of your records and all instances where your medical information was given out, which is otherwise your right under HIPAA.

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Gaius,

Yes, you are right, about HIPPA.

I feel comfortable talking to my doctor about the few cups of tea that I use to abort my headaches.

He does not take notes or write down any details. I am not concerned about my records. I, of course, am not growing anything and I don't know where my friend gets the meds. for me. You know?

If the authorities are concerned about what herbs I have used for my ailments, then they have too much time on their hands. I don't think they care about me, unless I slam down a six pack and get behind the wheel of my car. Being a sufferer of cluster headaches, it's not likely I will be doing that.

I hope I am right about this.     Leslie :)

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My neuro was completely on board. Then he moved to Reno. And I stayed behind in Wisconsin.

I printed and gave a copy of the BOL study to my current neuro, and he said he's heard some really good things about this treatment. I left it at that.

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Yep, I have been up-front with my primary care doc and my neurologist. When I was entering my last cycle, my neuro wrote me a script for Oxygen and Amerge, telling me that if I busted, I should wait 48 hours to take Amerge. Both were interested and pleased with the result.

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I first told my gp about O2 and she looked into it and wrote a script. Of course it was not adequate flow so I went to Welding O2 within 2 weeks. I also told her about the shrooms etc, and she brushed it off as not interesting to her. My Neuro didn't even want to see me for my CH once he knew my gp had prescribed Predisone and Verapamil. I decided to drop all scripts and stick with O2. Have seeds but looking for shrooms between cycles so I can be ready when the beast comes again.

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My neurologist supports it and even made a chart at my last visit on how to use the seeds.  I think the fact that he is a DO rather than an MD doctor expands his mind to using alternative therapy and he is very aware of all of this because he reads what I bring to him.  My neuro before him (a MD doctor), just said I shouldn't believe everything I read on the internet as he would roll his eyes.  He was simply a "pharmaceutical kick-back doctor" as I call it.  The only good I got out of him was scripts for O2.  I get to see my current neuro this Friday to explain to him my last busting experience in that past cycle.  That fact that I can go into my 6 month visit and the second thing he asks is how are the seeds working is just refreshing?

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If your doctor is keeping up with headache research, then he or she knows about our results and this research. We've made presentations at international headache conferences and have been very well received. We've been published in the top medical journals.

Heck even the fake doctors on TV know about us as we made two episodes of House.

During the research for our first 53 person case series, the researchers that viewed the patients medical records found that although every doctor knew their patient was using psychedelics (since they forwarded the medical records for the study) very few made any mention of psychedelic use in the medical records. This would have been ommitted for the privacy of their patient.

Almost all doctors that find out about their patients use of psychedelics has been supportive. Most fall within a response of: "Good luck, let me know how it goes" to "Good luck" and putting their fingers in their ears and going "LA LA LA LA LA LA LA" ;-)

There may be others that I'm aware of but after all these years, I only remember one person being told that if they decided to use psychedelics, he couldnt treat her any more.

This was a 70 year old woman and she got up and left and found a new doc.

Bob

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Any time I've discussed this with any of my docs, I preface the conversation by saying, "Please put down the pen, close my chart, and let's just talk for a minute. I don't want any of what I'm about to say written in my chart."

I've never had one of them refuse to just talk.

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I just told our headache specialist that I wanted to discuss something off the record.  I told him what we were contemplating, and he listened, then wrote a script for the next drug on his mental list.  He scheduled our normal follow up, and said we could let him know then what we decided. 

I canceled and rescheduled a number of times during detox and the early days of finding our way through this process.  It was about 4 months late, but  I wanted to have something to report when we returned. 

By the time we did, he was off all prescription meds and Andrew was doing much better.  He asked what we were doing, and was very curious about the technicalities of obtaining alts, etc.  He said he had never seen Andrew look so good, and he would like to see him back in 4 months.  We continue to maintain our relationship with him, though really all he does is keep up the o2 script.  My hope is he will continue to see our good results and learn from our experience.

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Interesting question. I am a physician doing a lot of Headache Medicine in Boston. It is my understanding that we do have first amendment-free speech protections when mentioning this treatment- and I do. I have informally discussed this with an attorney. Amazing how closed minded some physicians are! :)

I am going to the Portland meeting, the first Clusterbusters meeting for me and looking forward to it!

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