Jump to content

New Website Launched


Psiloscribe
 Share

Recommended Posts

Over 10 years ago, the first website describing the treatment of Cluster Headaches using psychedelics was launched. Since then, there have been several updated versions. Dozens of people have been involved over the years, helping with designs and adding their input and untold hours of work and dedication.

This has definitely been a project built by the community.

Tonite we are launching our latest version

http://clusterbusters.com

I want to personally thank for myself, and for Clusterbusters, Michelle Adamson for her years of work building and maintaining the site up to this point. Michelle, you have been an important and invaluable part in any and all progress we've made.

As to the new site, i want to thank Doug Wright and Chris Hannah for all your hours of hard work putting this new site together and getting it launched. Not only beautifully done but also in it's quality look and content.

It will definitely help take us to the next level.

Thanks also to those that helped in creating this web site, for their reviews and comments. Still, the community continues to reach out and work together. Thank you all.

Enjoy the new site. Feel free to pass along the new site to others and keep an eye on it as we continue to add content.

Again... http://clusterbusters.com

Bob

Link to comment
Share on other sites

There are no plans to change the message board.

A new logo is still on my list of things to do.  We wanted the site up and working before the Headache on the Hill.

LOL, one headache at a time!!

Chris did virtually all the work on the site, a great job!!

Link to comment
Share on other sites

It is well laid out and contains a TON of info. 8-)

Included is the story of the elephant who died from an overdose of LSD. Evidently going up by over 1000% was too much. :(

Kudus to Chris. :) :) :) :)

Personally, I like the microscope.

BTW: There are two of me now, but my alias will remain secret today. ;)

Link to comment
Share on other sites

Thanks to everybody that has put in the time and effort on this website, I know nobody gets paid for this, and it has to be a lot of work.

Unfortunately, I'm going to rain on everybody's parade (again).  I've been resistant to post this, because it doesn't seem like everybody wants to hear it (or as someone PM'ed me "making what seems like a reasonable but unconventional assertion, and being treated like the guy who brought the skunk to the picnic.") but oh well.  I see information that is not really accurate and I point it out.  So kill me.

There is a lot of talk on "Tryptamines", but "Tryptamines" are a general term used for a class of drugs, not all of them will help you with your clusters. Melatonin, sumatriptan, zolmitriptan, and bufotenin are examples of tryptamines that are not going to help you at all in the typical "busting" way.  I'm sure that there are more that will help and probably even more that won't, but I find it hard to believe that we are just throwing statements out like "Do not use tryptamines if you are pregnant, they can cause miscarriage.  Do not use tryptamines if you suffer from or are prone to mental illness.  Take tryptamines only in the proper mind set and physical setting.  Tryptamines have physiological effects.  Tryptamines are illegal."  This might seem like small potatoes, but I would think that it's not that unlikely that someone's going to read "Tryptamines", look it up on wikipedia and read the whole huge list of tryptamines (something I would recommend the next time we update our page) and say "wow, melatonin is going to give me a miscariage?"  or "I can bust with Zolmitriptan?" or "I've had a mental illness, Melatonin and Imitrex can make set me off?"

And when talking about how the hallucinogens actually work..."Some ideas seem to center on the way tryptamines constrict blood vessels"             

 Like some ideas twenty years ago?

We donÂ’t know that any of the other popular illegal, recreational drugs are helpful for clusters. Now and then someone shows up on a discussion board claiming some drug or one herb or another is helpful. In most cases these claims donÂ’t pan out (this goes for legal herbals and prescription drugs as well). A few have stood the test of time and use by clusterheads - as the tryptamines have, and kudzu, for example. So far as we know, none of the other popular illegal drugs are any help for clusters. This goes for methamphetamine, ketamine, phencyclidine (PCP, angel dust), dextromethorphan, salvinorin-A (salvia) and whatever the abused drug of the month happens to be.

So are we supposed to just ignore Dr. Sewells post on Ketamine trials for cluster headache that came to the conclusion that "All cluster headache patients had complete resolution of their ongoing cluster episodes", or NeoCat's experiences (I believe that the IV ketamine therapy has successfully interrupted the current cluster episode), or Bushman's experiences (4 days later ive been totally pain free), or my experiences (for the first time in almost 10 years I have gotten 3 weeks of just shadows more than once)  Ketamine should not be in any way lumped together with Salvia or methamphetamine.

I'm sure I've already posted enough about our LSA seeds info being inaccurate....

I was also surprised to find that the SSRI's are listed as something that might interfere with a bust, but the danger of getting serotonin syndrome by combining hallucinogens with them is not mentioned.  Of particular concern should be that many times SSRI's will make the hallucinogens seem much less potent, but this doesn't necessarily equate to "less serotonin in your brain".  In other words, it can make it seem like a good idea to take huge doses in order to get an effect from them, which will put you at an even higher risk of serotonin syndrome.

There is more that I disagree with, but I'll just stop there.  What I will stress is that I think it is very important that in order to be taken seriously as a group, we have accurate information available.  I know for me, when I see info on a site that is not accurate, I just stop paying attention to that site.

-Ricardo

Link to comment
Share on other sites

I didn't scrutinize the new site, but it seems to me Ricardo has a point, and that the whole content should make consensus.

Was there a committee formed to come up with this content?

It wouldn't be too late to form a revision committee... recommendations could be proposed, then discussed with the members.

I always supported positive criticism. I think it's the best way to go forward. Ricardo's critic appears to me to be very positive

:)

Link to comment
Share on other sites

There is no "committee" per se and there won't be one.

This website has been a living document for 10 years with scores of people helping to add content, make suggestions and help.

Usually if someone has a suggestion or a comment or wants to "help" they usually write to either me or the webmaster or anyone else on the CB Board of Directors and discusses it.

We ALWAYS get, review, discover and discuss new information from the message board ALL THE TIME.

The discovery of LSD for clusters was done ON A MESSGE BOARD.

Considering most of the above "topics" have been in the files for years, a note to discuss updates would have been nice.

There are always changes going on in research (thats what research does, find new information) and we try to keep up. its "almost" always nice to have areas needing updates pointed out. There have been tens of thousands of hours of work put into the files and website. There will be tens of thousands of hours of work yet to come.

As to ketamine, LSA and Tryptamines, there are many "differing" opinions.....

We are looking at what "may" need updates.

Anyone that wants to stop looking at our website until its accurate enough, feel free to send me your email address and I'll be sure to send you a "notice of update" and let you know it's been updated.

Bob

Link to comment
Share on other sites

I feel like I know Chris and wanted to sign up. I'm not the sharpest knife in the drawer but trying to input the secret words required for the initial signup pissed me off after about ten tries.

I guess I don't understand the purpose first off and secondly I'm a dumb ass.

At least I tried. I really like this site and don't have a lot of time to contribute elsewhere anyway.

Patience and moderation were never my long suit  :(

Dan

Link to comment
Share on other sites

If I had taken the time and had tried my best to put the new site together, you'd be walking on the fightin' side of me.

And I respect you for that.  I would feel the same way.  But then, after I had time for my anger to dissipate, I would ask, "Does he have a point?"

Link to comment
Share on other sites

The point is not whether or not you have a point, Ricardo.

I agree.  This isn't about whether or not I'm right.  Lots of times I'm wrong and I have no problem with people telling me that I am.  To me, the real point is just how important it is to have accurate information available on this site, and that the atmosphere on this site is conducive to new ideas that might fly in the face of even "our" conventional wisdom.  I guess one of the main reasons I've been prickly is because I've tried this all before and felt like I was practically chased off the board because I was saying things nobody wanted to hear.  I got used to the idea that people aren't going to like what I have to say a lot of times.  That's OK to me.  I very much value the community and support that I can get from this board, but it seems more important that I get information out there, regardless of playing nice so that I can have circles and circles of conversations that lead no where (and end up with people getting pissy with me anyway)--in some ways I feel like I've gotten to the point where I feel I dread the idea of posting shit because I'm about to tell people that I like and care about that they are wrong.  I can try and do it gently, but in my experience that has never worked, I still piss people off.  It gets old and tiresome, and leads me to the shortcut of "eventually I'm going to post this and people aren't going to like it."  I can try and pussyfoot around the situation, draw it out and make it take 3 days worth of back and forth posting, but the end always seems the same--I get the information on the board that I feel is useful, and I piss at least a couple people off.  So what's the point?  Same end result, it's just a question of "am I going to spend three days trying to keep everybody happy" when the end result seems to be the same whether I'm spending days or minutes on a post.  I got used to the idea that I might not be making friends on here.  To me, the more important thing is that I have come across a lot of information, and at this point I feel like I have a moral obligation to share it, regardless of whether it angers people or ruffles peoples feathers. 

All I ask is that if we have different opinions on something, let me know why you feel that way.  I do not feel like this is a lot to ask.   I feel like over and over, whenever I am throwing out an idea that doesn't go with our usual ideas that have been written on this board, nobody will even touch it.  Nobody wants to change anything, but nobody wants to answer any of my questions.  When I ask things like "what do you mean by this..." or "where did you get your source for this information, can I see it?"  kinda thing, the questions get completely ignored.  I am completely open to people contradicting what I say, but I want to see some evidence.  And as we all should be dedicated to finding the truth of our situation, I think we should all demand that the info that is put on here is backed up with science.  I know that a lot of this science is unknown at this point and I think it's OK to say "we don't know"  But when I ask question after question and all I'm asking for is to have people back up their info, or at the very least let people know where they got there info, and very clearly seperate things into "This is a fact", here's the backup info...from "This is an opinion" and this is why our opinion is this way, and have the whole thing essentially ignored...

I challenge any one of you members to tell me truthfully that if you asked a question more than once that you thought was important, only to have everyone, even the moderator that you are conversing with, completely ignore 95% of the questions asked--tell me you wouldn't get pissy too. 

I also think it's important when a member comes and says "this isn't true, and I have all the medical abstracts and information to back up what I say" to either bring out evidence that shows what they are saying to be not true, or explore the idea that what we have written might be wrong.  Whether it's me or any other buster.  EVEN if it pisses us off.   

My intention is in no way to anger people or cause strife.  I'm sorry but I feel like I am at a loss as to how to go about what I feel like I need to do on this message board.  I've tried the PM thing with moderators with no real positive outcome...I've tried pussyfooting around situations in attempts to keep the peace.  I feel like I've tried all the ways that I know of confronting information that is wrong without stepping on toes, but it has never worked. 

I am always open to suggestions.

-Ricardo

Link to comment
Share on other sites

Okay. Peace in the valley.

Ricardo, your presence on this board is very much appreciated. Your posts are exceptionally well written. I read every one of them and look forward to your insightful comments whenever you favor us with a new one. Those comments are typically backed by good science which you artfully explain whenever that science starts to go over some of our heads. Using psychedelic drugs to "bust" cluster headaches isn't science. It's an illegal, underground activity that's a long way from being legitimized. Almost daily, we learn something that disproves something else that we had taken for fact. We're a work in progress and will be for some time to come. Bob notes in the first post of this thread that "tonight we are launching our latest version," not the "correct" version or the "final" version but the "latest" version; the version that is as relatively correct as we can make it at this moment in time. It took a whole lot of time and effort by a very few people, working on our behalf, without compensation - time that would rather have been spent with family and friends or doing fun stuff - to bring this latest version to fruition.

This is the time for heartfelt thanks and appreciation for a job well done. The time to criticize and correct can come later, after the back-patting and cheers for all the good work involved in preparing this "latest version" are over. Your criticisms are valid, Ricardo. They're not being questioned here. It's the timing of those criticisms that's in question. And it's just me that's doing the questioning. Others will, I'm sure, side with you and expect everything to be perfect when it's presented.

Say some friend of ours buys a new car. He's done a lot of research. Talked to a lot of people. Test driven all the potential models. He buys what he thinks is the best bet for his money and after washing and waxing it to perfection, drives it over to our house to show it off. Rather than gush over this wonder of automotive wonders, we pick at every little imperfection and give evidence for what we feel would have been far better choices if we had been doing the choosing. The problem isn't that the imperfections don't exist or that our evidence for making different choices isn't valid. The problem is that we had an opportunity to make our friend feel good; to make him feel like he'd made an intelligent, well-reasoned decision given the information he had. Instead, we hurt his feelings and put a damper on what should have been a festive occasion.

It's very important that the information we put out there be accurate and timely. It's also important for us to acknowledge that that information is subject to revision as we learn more about these substances and how they work in human subjects. As "citizen scientists" working underground with illegal drugs, giving subjective opinions regarding their efficacy at mostly indeterminate dosages, we can't help but infuse our results with error. We're doing the best we can with what we've got - but with the understanding that what we're doing isn't science. It's the hit and miss, trial and error groundwork that precedes science. What we do best here is support each other. To me, that's the most important thing and what we should be doing whenever possible. You missed an opportunity to do that, Ricardo. That's all. Not a big deal. Just a missed opportunity to make a few others who are working on our behalf feel good about what they've done.

Ron

Link to comment
Share on other sites

Say some friend of ours buys a new car (...) drives it over to our house to show it off (...)

I'm just a newbie here, but I felt right from the start I was welcome to consider myself as part of the community.

I somewhat understand frustration from people who have worked heart and soul to condense years of research, experience and findings to get this site up, following what I perceive as constructive criticism.

The car example isn't quite right though, as this car (the Web Site) is for everyone, and by everyone. It's everyone's baby (well I suppose it is).

I understand those who worked hard on this new Web Site take any critics personally, but I think it's important to remain rational. I saw Ricardo's post strictly as a good chance to polish an already nice Jewell but obviously (and it's normal for ongoing research) imperfect.

I feel some sort of process to reach consensus has to exist, whatever that process is, as I see this Web Site as the fruit of a contribution from everyone. Everyone includes those who are not satisfied. Consensus is important here for credibility to compensate for lack of scientific evidences in the "busting" field.

I realize the French word "consensus" isn't defined exactly the same as it is in English. Here is a translation of a little part of the French Wikipedia for "consensus" which describe what I mean by consensus:

"Consensus as a result obtained by using a method of decision making, where one focuses on the validity of the views expressed by each of the parties and that seeks to endorse a choice likely to secure an agreement presented as unanimous or nearly unanimous."

I posted on this thread earlier to point out that Ricardo wasn't alone, that it's not nearly unanimous. It's important for me also that the information on the Web Site be in accordance with the latest findings, latest trends on the board (like the RC seeds info being probably what was consensual last year or so on the board, but not anymore)

I understand people's frustrations, maybe the timing wasn't right, but I personally think it was needed, and that it's a good thing it came from someone part of the community before someone from outside of the community pointed it out and discredited the Site.

Please, let's not let emotions get in the way of research. That's what we're doing here, no? I mean research. Strangely enough, I'm a very emotional person in my day to day life, but not at all when it comes to work. So I understand emotional reactions, I have them all the time.

Again... we need to deal with everyone. So that includes those who let some emotions blend with their work, and it includes also the rational jerks like me who will undoubtedly and systematically point out the lacks and imprecisions. Besides, a reaction like the one that has risen on this thread from the community is certainly no invitation to anyone to post any critic at all. High standards of quality need to see criticism as a part of the process to reach these high standards of quality.

Peace...

I'm only being myself, as everyone is I think. We're all in this CH boat together. Let's stay together, we're stronger this way.

Link to comment
Share on other sites

On the Ketamine- I'm newly diagnosed with CH, but last year they gave me ketamine at the ER for what I guess now was an attack though at the time they said it was a severe migraine with acute sinusitis. The ketamine didn't touch it even after a second dose. I didn't have the amnesia, or feel euphoric or fall asleep. I was still in pain Level 10 and stayed that way for almost 3 hours. The dr who says ketamine works 100% is wrong. It didn't stop the cycle or even interrupt it. When I was finally released, I was hit again that night as I laid exhausted in my bed. If anything the ketamine made my body even more tired and unable to recover.

I have some other experience with Ketamine also. almost 3 yrs ago my son who was 7 at the time suffered 3rd degree full thickness burns to 23% of his body. Ketamine was used daily on him during his treatments. Ketamine did not work for the first 3 days. 75mg of morphine daily did not help him. I have a theory based on what I saw, what I went through, and even what the burn surgeon said... Ketamine will probably work on a reg level 7, maybe 8 pain. I don't think it will touch a Level 9 or 10. It didnt with my son or with me. I think it has to do with our brains being 100% focused on the pain itself and we can't relax enough to allow the meds to work. The surgeon told us with our son the morphine, ketamine, and versaid wouldn't work when our son was spastic. We needed him to try and relax a little and allow the meds to work.

I don't mean to step on toes, but 100% of CH sufferers do not get relief, interruptions, abortions, from ketamine. I'm the .01% who didn't

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
 Share

×
×
  • Create New...