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Psiloscribe

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Posts posted by Psiloscribe


  1. Just a follow up on the post above regarding a neurologist being jailed.

     

    After further investigation,,,,,,,nevermind. ;-)

    ​I may pull the post later on but wanted everyone to know that it appears that there is no connection to psychedelics.

     

    That is all. ;-)

    ​Bob


  2. This topic has been discussed for 15 years. It may have been more helpful 15 years ago but we are at the point now that it would not help and could hurt.

     

    Most of the reasons have been noted. One note, jury nullification is nice if you can get it. The problem is with federal law, you can not use any evidence for defense that explains WHY you did it. If people could, there would be a LOT more jury nullification. In some cases, even if I was on the stand defending myself and I mentioned I had cluster headaches, the prosecutor could ask for a mistrial.

    This is why people used to get life sentences for stealing a loaf of bread to feed their starving children. In some jurisdictions,  the price of a loaf of bread can put you into felony range and you'd be charged with grand theft. (just a sad side note to explain the slippery slope of American justice)

     

    We will be opening a psilocybin study for clusters very soon. Weeks, months? days? Very soon. We've come a long way and are really at the point that the progress we've made could be harmed and publicity of this sort now wouldn't move the needle to far forward.

    There are many other reasons its not a good idea and I hope we never have to defend someone.

     

    As to the previous post regarding someone in jail now, I'm very surprised to hear of this and even more that the first I would hear of it in 3rd hand in the message board.
    ​

    Can you Zgreek, either have this friend of yours contact me or get me some contact info. She can write to me at bob@clusterbusters.org


    Bob Wold
     


  3. I'd like people that attended this years conference in Austin, to post their reviews here.  You can post a picture or two if you'd like

    but I'd prefer that most posts here are of testimonials of your experience. We will have another thread for everyone to share their

    pictures and CB will post our full set in a thread of it's own.

    ​Here is my first testimonial and I will do a set of featured speakers and VIP's that made the event as successful as it was.
     

     

    Eileen Brewer

     

    ...

    I want to start out with the most important person in making the event as successful as it was. It is always our goal to provide the

    venue for what is always the most important part of our conferences, to allow the people attending to be the stars and the most important

    part of the event.

    Eileen’s dedication to Clusterbusters goals and to the individuals that make the event as important as it is to people, and her contributions,

    cannot be overstated.

    Many people that were there had contact with Eileen Brewer prior to the event and everyone in the community, whether you were there or not,

    should be made aware of Eileen’s involvement in making this an incredible event for everyone.

     

    Eileen, the event coordinator, began working on this year’s event back in January and has been putting in literally thousands of hours of work

    on this project. It is certainly a full time, part time job, and all on a volunteer basis.

    From helping select the event location to coordinating every aspect of the event. Negotiations with the hotel, finding the best location when

    problems arose with the other options for where to hold the event.

     

    Eileen was instrumental in scheduling all the speakers, determining meals and breaks and conference room selections and details, involved

    in putting together the printed materials and dealing with all the suppliers.

     

    There is no one more responsible for setting the stage for people’s lives to be enriched and changed, than Eileen Brewer.

     

    Please join me in thanking her (conference@clusterbusters.org) for all of her hard work and her determination to make the event something

    special for all in attendance.

     

    As we all know that clusters effect the entire family, so to does the volunteer work of those working with us.

     

    Thanks are owed to not only Eileen but to her family, Dan, Sammy and Max for sharing her time and talents with us.

     

     

     

    eileen%20at%20podium_cropped_zpsmunqrnk8

     

     

     

    Bob Wold


  4. As some of you know, rather than flying home from the conference, I took a side trip to visit with the FDA regarding the current state of available treatments for cluster headaches.
    Myself and a couple of headache specialists and others had the task of convincing the FDA that we are not content with 2 level A acute treatments, oxygen and Imitrex, and 1 level C preventive, verapamil, according to the AAN's recent analysis.

    They were under the impression that we had all the options we needed. I made the point that as long as one of the options remains suicide, we are not content.

    I need your help. I am preparing my written response as a follow up to the meeting and the discussions will continue.
     

    Please take a few minutes to answer the survey at the following link. Of course answer all questions honestly and truthfully. Just taking note of questions #3 and #7 will explain the importance of gathering this data and relaying it to the FDA.
     

    Its only 11 questions and should only take a few minutes. I need to get my response to them rather quickly so please don't wait too long.
     

    https://www.surveymonkey.com/r/Clusterbusters

     

    Thanks much,
    Bob & Clusterbusters


  5. Anita,

    First off, thank you for your support for your husband. Just knowing that you'll still be there after the attack and after the cycle are over, is the most important thing we can ask of any supporter.

     

    Helping with the research so that he can always be aware of things happening that give him some hope is huge. We often don't want to hear any thing at all and we can shut down. It helps to know that others are working on solutions.

    ​As to what the hospital offered, benadryl and valium are pretty useless. The valium probably would have helped you more than him. When going onto ERs cluster people are often told to "relax and calm down" and the doctor will see you soon. I guess we seem a little on edge to people not knowing what we're going through.

    The Benadryl at least has some research behind it's use. Some people with clusters use it to help get through those night time attacks. It can help people sleep.

    Clusters were at one point known as "histamine headaches" and some cluster centers treat people with an IV Histamine treatment. Histamine levels do increase during attacks. Researchers aren't sure if its a result of the attacks or if it has some triggering effect. The histamine treatment is done over a long period of time and given constantly to try and get the body to desensitize itself to histamine. it does help some people.

    ​Hence, the Benadryl trick. its given for the anti-histamine effect.

    ​all the best,

    Bob Wold


  6. Thanks everyone.
    Lab reports came back with good news and no more surgery and no chemo needed. She'll be starting a course of radiation in a few weeks and then we'll both be seeing everyone at the conference.

    Thanks again for the thoughts and prayers and well wishes. The cluster family means a lot to both of us. its been almost 20 years on the different generations of this board.

    Best,

    Bob

     


  7. Hello to everyone thinking about attending the conference in Austin.

     

    There are some people that will only be able to attend if they can find a partner to share a room with during the conference.

     

    If you are looking to share a room to help with expenses, or are willing to share your room with someone in need, please use this thread to make arrangements.

    If you're interested, I would suggest posting an email address along with your posting so that you can discuss details and chat about it in email.

     

    Looking forward to seeing everyone
     

    Bob

     


  8. Hello people,
    Sorry I've been AWOL so much. I wanted to update you on a couple of things.
    First off, a few people know but not many, that my wife Mary was recently diagnosed with breast cancer. That has kept us busy. She has already had a couple of surgeries and we are now waiting for more lab reports to tell us how we need to proceed. I know some of you know her and have met her at the conferences.
     

    The conference is coming together very nicely. Eileen brewer is doing a great job pulling it all together. We will be smashing attendance figures from years past. I hope many of you can make it.

    I wanted to explain a little about our scholarship process and awards. We had an extraordinarily high request for help getting to Austin this year. Requests well above $20,000.00 in total which is considerably more than we could ever meet. 
    Our goal is always to try to get as many people there as possible and we used the limited funds we had to try to do that. If you applied and were turned down, it had nothing to do with anything other than we just didn't have the funds. I wish we could offer free hotel rooms and transportation to everyone because we know how important these events can be for people.

    Thanks to everyone here for keeping the board active and helping everyone that arrives. Its an important part of what we do.



     

    best,
     

    Bob


     


  9. Announcement of New Study Opening

     

    New Cluster Headache Questionnaire: An International Study

    Clusterbusters is pleased to announce the launch of a very important research study:

    Cluster Headache: Investigating severity of pain, suicidality, personal burden, access to effective treatment, and demographics among a large International survey sample.

     

    Study Title: Cluster Headache: Investigating severity of pain, suicidality, personal burden, access to effective treatment, and demographics among a large International survey sample.

    This study is collaboration between Clusterbusters and Larry Schor, PhD Professor of Psychology at the University of West Georgia.

     

    www.clusterheadache.center

     

     

    We are currently contacting individuals who have joined our patient registry or completed a previous Clusterbuster’s survey and have indicated they may be willing to take our online survey.  We hope Headache advocacy groups as well as Neurologists, Headache specialists, and clinics will refer people to the survey, which can be accessed at www.clusterheadache.center

     

    Because this is an International study, we are seeking Cluster Headache patients worldwide.

    This is a very important study that will help in several different areas of future research and treatment options for people with clusters. Please participate and pass along to everyone you know with clusters. Drop off the link to your doctor and ask him/her to spread the word among the rest of their cluster patients.

    For more detailed information, follow the links found on the banner on the Clusterbusters website, homepage.

     

    We expect this study to be the largest of its kind ever produced and will provide important data that can be used in our advocacy efforts as well as helping demonstrate the need for additional cluster headache research.

     

    Please help us all out and complete the survey when you get some time.

     

     

    Thanks very much,

    Bob Wold

     


  10. Clusterbusters has been contacted by a company doing phone interviews of cluster patients regarding cluster headaches and some questions about a new treatment that will be coming out. They are looking for a couple more people. This is for US citizens only and for people with clusters.
    If you want to find out some more information and possibly set up an appointment for a call, send me a message here and I will give you their contact info.

     

     

    Bob

     


  11. This is also being posted in the Research section so it can be more easily located in the future.

     

    Here is a little Christmas/ Holiday gift to everyone that has been working so long at Clusterbusters to move our work forward.

    Another important step in our work has been taken and we’ve been published by a very well respected medical Journal and now available online at one of the most widely referenced medical publishing sites.

    Getting this information not only published but made available through this outlet is a testament to the fine work completed by our team of researchers at Yale University, Dr.’s Schindler and Gottschalk and the late Dr. Sewell, the Clusterbusters Medical Advisory Board and specifically Dr. Robert Shapiro, and the hard and determined work of both Dr. Douglas Wright and Ms. Marsha Weil.

     

    I am posting the abstract but the rest of the 11 page document is covered under copyright regulations. Feel free to copy the following ISSN and online info and pass along to your physicians for discussions on the topic. ;-)

    This study, it’s followed guidelines, results and subsequent publication moves our work a step past anecdotal reports and will be the basis for continued research studies

    Thank you to everyone that took part in this study, all those that worked tirelessly for the last couple of years, and to all those that have supported our work.
    Thank you for the work, the support, and the inspiration to keep moving forward.

     

    Journal of Psychoactive Drugs, 47 (5), 372–381, 2015

    Copyright © Taylor & Francis Group, LLC

    ISSN: 0279-1072 print / 2159-9777 online

    DOI: 10.1080/02791072.2015.1107664

     

     

    Indoleamine Hallucinogens in Cluster

    Headache: Results of the

    Clusterbusters Medication Use Survey

    Emmanuelle A. D. Schindler, M.D., Ph.D.a; Christopher H. Gottschalk, M.D.a; Marsha J. Weilb; Robert

    E. Shapiro, M.D.c; Douglas A. Wright, D.C.b & Richard Andrew Sewell, M.D.d

    Abstract—Cluster headache is one of the most debilitating pain syndromes. A significant number of patients are refractory to conventional therapies. The Clusterbusters.org medication use survey sought to characterize the effects of both conventional and alternative medications used in cluster headache.

    Participants were recruited from cluster headache websites and headache clinics. The final analysis

    included responses from 496 participants. The survey was modeled after previously published surveys and was available online. Most responses were chosen from a list, though others were free-texted.

    Conventional abortive and preventative medications were identified and their efficacies agreed with

    those previously published. The indoleamine hallucinogens, psilocybin, lysergic acid diethylamide,

    and lysergic acid amide, were comparable to or more efficacious than most conventional medications.

    These agents were also perceived to shorten/abort a cluster period and bring chronic cluster

    headache into remission more so than conventional medications. Furthermore, infrequent and non-hallucinogenic doses were reported to be efficacious. Findings provide additional evidence that several indoleamine hallucinogens are rated as effective in treating cluster headache. These data reinforce the need for further investigation of the effects of these and related compounds in cluster headache under experimentally controlled settings.      

     

    The full article can be accessed here: http://www.tandfonline.com/doi/full/10.1080/02791072.2015.1107664

    Happy Holidays everyone!!

    Bob
     

                                                                  

    :)


     


  12. Here is a little Christmas/ Holiday gift to everyone that has been working so long at Clusterbusters to move our work forward.

    Another important step in our work has been taken and we’ve been published by a very well respected medical Journal and now available online at one of the most widely referenced medical publishing sites.

    Getting this information not only published but made available through this outlet is a testament to the fine work completed by our team of researchers at Yale University, Dr.’s Schindler and Gottschalk and the late Dr. Sewell, the Clusterbusters Medical Advisory Board and specifically Dr. Robert Shapiro, and the hard and determined work of both Dr. Douglas Wright and Ms. Marsha Weil.

     

    I am posting the abstract but the rest of the 11 page document is covered under copyright regulations. Feel free to copy the following ISSN and online info and pass along to your physicians for discussions on the topic. ;-)

    This study, it’s followed guidelines, results and subsequent publication moves our work a step past anecdotal reports and will be the basis for continued research studies

    Thank you to everyone that took part in this study, all those that worked tirelessly for the last couple of years, and to all those that have supported our work.
    Thank you for the work, the support, and the inspiration to keep moving forward.

     

    Journal of Psychoactive Drugs, 47 (5), 372–381, 2015

    Copyright © Taylor & Francis Group, LLC

    ISSN: 0279-1072 print / 2159-9777 online

    DOI: 10.1080/02791072.2015.1107664

     

     

    Indoleamine Hallucinogens in Cluster

    Headache: Results of the

    Clusterbusters Medication Use Survey

    Emmanuelle A. D. Schindler, M.D., Ph.D.a; Christopher H. Gottschalk, M.D.a; Marsha J. Weilb; Robert

    E. Shapiro, M.D.c; Douglas A. Wright, D.C.b & Richard Andrew Sewell, M.D.d

    Abstract—Cluster headache is one of the most debilitating pain syndromes. A significant number of patients are refractory to conventional therapies. The Clusterbusters.org medication use survey sought to characterize the effects of both conventional and alternative medications used in cluster headache.

    Participants were recruited from cluster headache websites and headache clinics. The final analysis

    included responses from 496 participants. The survey was modeled after previously published surveys and was available online. Most responses were chosen from a list, though others were free-texted.

    Conventional abortive and preventative medications were identified and their efficacies agreed with

    those previously published. The indoleamine hallucinogens, psilocybin, lysergic acid diethylamide,

    and lysergic acid amide, were comparable to or more efficacious than most conventional medications.

    These agents were also perceived to shorten/abort a cluster period and bring chronic cluster

    headache into remission more so than conventional medications. Furthermore, infrequent and non-hallucinogenic doses were reported to be efficacious. Findings provide additional evidence that several indoleamine hallucinogens are rated as effective in treating cluster headache. These data reinforce the need for further investigation of the effects of these and related compounds in cluster headache under experimentally controlled settings.      

     

    The full article can be accessed here: http://www.tandfonline.com/doi/full/10.1080/02791072.2015.1107664

    Happy Holidays everyone!!
     

    Bob

     

                                                                  

    :) 


     


  13. Our Clusterbuster conference is only a couple weeks away!!

    For those of you that aren't going but would like to say hello to the group, you have a chance.

    Some of you have already sent us your videos but would like more and let more people participate.

    We're looking for a short (under a minute is fine) hello. Content is up to you but we're looking for you to say hello, your name, where you're from (Country, state, city ??) if you have clusters or are a supporter, and just a little hello message. Maybe your whole family wants to say HI. If you just want to use your screen name, that's fine. Maybe both names ;-)

    Your standard "vine" video is fine or a little longer is great. You can be funny or serious, before or after you've had your coffee.

    We'd love to show the international group that we are, and see how many countries can be represented.
    Say hello in Hungarian if you'd like. Especially if you are from Hungary :)

     

    We'll be showing the videos during breaks and lunch and possibly at the President's Reception.

    Everyone that sends one in can get a Clusterbusters wrist band and we will draw some names to get a conference tee-shirt.

     

    Send them in to us at: conference@clusterbusters.org

    Include your mailing address if you want a wrist band/shirt.

     

    Try to keep them "cluster" family friendly. Please don't post them here before the conference. Let's keep them a surprise to those attending. We may make the entire loop of them available on our You Tube channel after the conference (unless you want yours out of the loop)

     

    If you don't know how to shoot and send a video, find a teenager with a phone, have them take a short video and have them email it to you. Then forward it to us :D

     

     

    We'd love to see you at the conference!!!

     

     

    Bob


  14. Thunder Horse, on 30 Mar 2015 - 10:41 AM, said:

    how do you know if the completion of the questionnaire

    was successful please?

    should i have had an email to confirm at all?

    thank you ,

    -hoss

    Sorry I'm just getting to this Hoss.

    We do not have a confirming email on the registry. If it had not gone through you would have been notified.

     

    If you'd like to PM me your name, I can check to make sure for you. You may have already received an email regarding ongoing studies by now.

     

    Thank you very much for taking the time to register. The registry has been very helpful already in helping move research and clinical studies forward.

     

    Bob

     


  15. I've opened up this separate thread so people that are coming to the conference can discuss transportation once you get here and maybe share some rides. Please just post in this thread about transportation so people looking for rides don't get lost in other discussion topics. Please don't hijack the thread.

     

    Go ahead and post your arrival times and which airport and maybe people can share a cab or meet to share the same shuttle. People coming into Midway will have a trip to get up to the hotel.

     

    If we can bunch up a few people we might be able to help find a ride or you can discuss meeting to share a cab or travel together on mass transit, for those that are comfortable hoping on a train and making some connections. Once you get up to O'Hare (if you take mass transit) you can then catch the free shuttle to the Hyatt or Comfort Inn.

     

    This link provides some info on mass transit.

    http://www.transitchicago.com/airports/

     

    See you all soon,

    Bob

     


  16. Hummingbird, on 05 Aug 2015 - 9:47 PM, said:

    I would like to attend the conference, but would like to know if there is a scheduled time and date for each of the speakers.

     We should be posting at least a tentative schedule very soon.

     

    Thursday evening is the Presidents Reception for everyone to say hello as they get into town.

    Friday and Saturday are both full of presentations from 9am to 5pm

    I don't know that I would book the trip based upon seeing one or two speakers on any particular day. Things have a way of changing at the last minute with doctors changing flights or asking to be moved because of changes in their schedule that they can not control.

     

    Bob

     


  17. Hello Happymeal,
    Glad you found us and hope we can help.
    I hope you were able to get a script for 0xygen on your last trip to the doc. I don't know how much information on treating clusters has gotten to the medical establishment in Japan. But even if it's as current as here in the US, there are still many doctors that don't they should be prescribing 02 before anything else, let alone know how to prescribe 02 properly. Stick with it until you can get it and educate as many people on it as a treatment as you can. It will help others along the way.

     

    As to the other issues, we have a lot of info on the website linked above.
     

    The following link leads to all the general information on treating cluster headaches with psychedelics. Please click on all the embedded links also as there is a lot of information contained in these documents.

     

    https://clusterbusters.org/treatments-options-choices-and-more/psilocybin-and-lsd-in-the-treatment-of-cluster-headache/

     

    You should read thru all this information before treating your clusters with any of the psychedelic options.

    This is not a “take this pill and your clusters will be cured” treatment. You will also find information on these pages regarding melatonin and other things that can help.

     

     

    Ordering LSA seeds is easy online. There are several sites that can be trusted and have been helping people with clusters get good product. You don’t need to mention the seeds will be used to treat clusters and if you say you will be using them for that purpose, they can’t send them to you and will cancel the order. They are not for human consumption. They know what they will be used for. The larger suppliers that have been around a while will know if they have any trouble shipping to Japan. I suppose you could do a test order for Morning Glory seeds to see if they can get to you without trouble. You can always plant them like most people.

     

    BobW

     



     

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