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Everything posted by Psiloscribe

  1. A big thank you to everyone that helped make this trip such a success. i will be posting a full report here and on the website as soon as I can get it all written up. There is a lot to report on. Just the first of many thank-you's to Cindy for doing so much prep work and amazing work while in DC. Someone mentioned it was a little like herding cats and I agree. ;-) Thank you Cindy for not only all the work but also for keeping the motivation and determination levels high throughout the event. Clusterbusters pulled together a strong contingent of advocates that comprised a full 25% of the delegates in attendance. Once again they were all inspirational to the group as a whole and their determination made evident to all the representatives they met along the way. Thanks to our group, and John Bebee in particular, we were able to make contact with some of the most influential people in Washington. The very ones we need to hear our voices and are able to take action on our behalf. Our 'asks" involved the National institutes of health, the Social security administration and the V.A. All of the other meetings our advocates held with their reps made our needs known and will help bring the changes we all need. Thanks to everyone that attended, everyone that helped fund this mission and everyone that has supported us along the way. Bob
  2. In a little over a week, approximately 20 people representing those with cluster headaches will be ascending upon Wash. DC to have our collective voices heard and actions of support carried out. Thanks to those voluntering to travel with us and the moral and finacial support of others, this is about twice as many as last year. We expect twice the results. To anyone wondering if our congress will be listening let alone acting on our behalf, I offer you this message from Dr. Robert Shapiro, President of the Alliance for Headache Disorders Advocacy. The group we are joining in DC again this year. "Because of last year's HOH, research funding to study chronic migraine and post-traumatic headaches are now available through the Department of Defense." One of the very few areas where the government had allocated any research funding into headache disorders of any type, was the Defense Department of all places. This research funding covered TBI (traumatic brain injury) which is a common cause of the original triggering of cluster headaches. Very important research for everyone. Research that can eventually lead to discovering the root cause of cluster headaches. An important step in finding out how best to treat clusters and it's cause. An important step in finding a cure. The reallocatment of these funds was one of our primary 'asks" last year and we were successful in getting this funding reinstated. Not an easy task in this time of budget cuts. Everyone that joined us last year should be proud of this accomplishment. As of today, 79 participants from 31 states will be visiting approximately 140 congressional offices on April 9th. We will be hitting the "Hill" with new requests that are important to everyone with Cluster headaches, Sufferers and supporters, family and friends. Its not easy to take time away from work and family but this is an amazingly dedicated group. Inspired because they know they can make a difference for not only themselves but for hundreds of thousands of families that live with Cluster Headache.. Wish us luck! Please share this where appropriate as a thank you to those that went last year and as support for those returning this year. Bob Wold (edit by FG to correct font errors)
  3. Psiloscribe

    What would u say to Congress????

    Hello From DC, Just letting everyone here know that you have an incredible group of people here representing you all. We've spent the day gettig ready to make our voices heard. This is one motivated group.... And dont tell him I said so but......John Bebee is the star here. ;-) I'm proud of this group and the turnout from the cluster community. Give you all an update soon!!! Bob
  4. Psiloscribe

    Website Updates

    There have been some important updates to the new website. I would like to thank Doug Wright (Fun Guy) for all his hard work on getting the website up and running. He has spent an extraordinary amount of time on the site. I hope you all check out and share the following pages whenever you can. We have added a large section on the "About Us" page that explains all the different areas we are involved in and will help explain that we aren't just "those mushroom people" ;-) Thanks to everyone that has helped us expand our footprint in cluster research, education and advocacy. http://clusterbusters.com/?page_id=24 We have a new comprehensive oxygen page and thanks to Jerry (CH Father) it is the best 02 page available. Please check it out and share it when people are looking for 02 information. http://clusterbusters.com/?page_id=77 Resource pages have also recently been re-vamped and specifically the newly updated doctor list Thanks very much to Bill Mingus for all the work pulling this together and keeping it updated. Also thanks to OUCH for allowing us to build upon their list. http://clusterbusters.com/?page_id=455 Besides the people mentioned above, there are many people doing an incredible amount of work keeping CLusterbusters growing and expanding our reach. Thank you all very much. Bobw
  5. If you are bringing someone with you on the trip and they are going to be going with you to visit the offices on the Hill, they MUST be registered with the Alliance so that their names appear on the appointment lists. They will need badges as supplied so please go to the Alliance site and get their names listed A S A P. Thank you The Management ;-)
  6. Thanks to everyone that is either going with us or has supported this event along the way. We have in excess of 20 clusterheads going to DC in April. We will strive to be the voice for everyone with clusters and making a case known on several issues. Bill, we'll be getting updates out to everyone that is going very soon. You and eveyone registered will be hearing from both the Alliance and CB as we set plans. Bob
  7. An update on this subject. it is something that we have discussed and worked on previously. Building, marketing, purchasing, design and inventory of a "store" is a large undertaking. it has to be to be done in a way that shows a profit and not a waste of any valuable financial reserves. That said, something like CafePress is one way to go. It does still take a lot of time setting it up to offer the right items, design logos, styles etc. Volunteer time has to be used wisely therefore any undertaking has to be "worth it" so to speak. I have spent quite a bit of time setting up a store at Cafepress prior to this topic arising again. it has been "in the works" but never finalized. One reason was making sure of logos that would be around a long time. So, much of the groundwork has been done. I do believe that it is a good time to get it done and operational. I appreciate those that have offered to help in this regard. There are a couple of people that that are involved in this already. I will speak with them and we will get going on it as soon as I get back from DC in early April. I will then followup with those that are still interested in helping out. Thank you all for looking for ways to expand our organization. The only way we've been able to grow as much as we have and been able to accomplish what we have, is by people stepping up and lending a hand. Even if Its just a matter of supporting our efforts, engaging others that need help, and giving life to our efforts and programs. Thank you all, Bob
  8. Psiloscribe

    Asking for permission

    Thank you for asking. Yes we would be happy to have it translated and published. Will you be running it through a translator such as Google translations or doing it manually? We are also working with friends in Finland and Sweden regarding the best way to get these pages translated and available. Please just give the proper credits and also a link back to the original. Also please give a link to your version here. We may want to link to it in our webpages. Bob
  9. Clusterbusters has been officially accepted as a full member of the (ADHA) Alliance for Headache Disorders Advocacy. http://www.allianceforheadacheadvocacy.org/who_is.htm We believe this is a big step forward for Clusterbusters. Our admittance into the Alliance, which consists of some of the most prestigious cluster and headache specialists and organizations in the U.S., signals a willingness and desire of mainstream medicine to work alongside Clusterbusters. I would like to thank all the people that have worked so hard over the years to make this possible. We have certainly come a long way. I would also like to specifically thank all the people that traveled with us and the Alliance to Washington DC this year. Everyone represented Clusterbusters and cluster sufferers everywhere, in a professional manner while displaying both passion and determination in their advocacy efforts. We think this is an excellent opportunity to work with the Alliance and itÂ’s member organizations as well as some of the individuals to find new ways of helping cluster sufferers everywhere. Thank You Bob
  10. Psiloscribe

    Harry Potter and Clusters

    Its not often, if at all that a celebrity admits to clusters.... How will Daniel Radcliffe's fans react to his latest turn - as a ... The Independent "I was in the middle of these weird things called 'cluster headaches'," he explains. "It's very rare evidently, but it's exceptionally painful. http://www.independent.co.uk/news/people/profiles/how-will-daniel-radcliffes-fans-react-to-his-latest-turn--as-a-damaged-drugtaking-beatnik-poet-7848568.html Bob
  11. Psiloscribe

    Trouble logging on?

    Thank you Lee Ann. There is someone having trouble. Hopefully it can be worked out. Bob
  12. Psiloscribe

    Trouble logging on?

    Hi folks, has anyone else had any trouble logging into your account when using an Apple device through ATT? IPhone trouble? have had a couple of reports and just wondering if anyone else is having a problem. if you are using Apple and ATT and not having any trouble, THAT would be good to know also. ;-) Bob
  13. If you're an Ebay seller, it's easy (and FUN TOO!!! ) to donate a portion of your sales to Clusterbusters. You determine the percentage of sales to be donated on each item. Clusterbusters is a certified non-profit with Ebay http://www.missionfish.org/ Mission Fish supplies all the necessary tax donation receipts. A couple of our members are already using this method. Thanks, Bobw an equal opportunity provider of donation alternatives ;-)
  14. Psiloscribe

    Ebay ! MissionFish

    MissionFish is now PayPal Giving Fund 100% of every donation will reach the nonprofits we serve. Since 2003, MissionFish has been dedicated to helping nonprofits create new sources of unrestricted revenue by making it easy for people to give as part of their everyday life. In the nine years of partnership with eBay Inc., we have helped generate over a quarter billion dollars for nonprofits through the eBay Giving Works and Donate with PayPal programs. Throughout this incredible journey, we have constantly looked for ways to improve our service and expand our impact. In 2011, eBay set up a new nonprofit organization – PayPal Charitable Giving Fund - to operate MissionFish and help further our charitable purposes. Since that time, the technical and operational support of eBay’s family of businesses has helped us realize unprecedented success. Today, we are thrilled to announce a significant new commitment from PayPal that will have a tremendous positive impact on our efforts going forward. PayPal’s financial support will enable us to deliver 100% of every donation we process globally. And, it is only the start of greater things to come. PayPal will be investing in further enhancements to our platform so that we might leverage the incredible benefits of their technology and payment systems to inspire and enable more giving around the globe. To reflect PayPal’s incredible commitment to our organization, and our common vision for inspiring and enabling more giving around the globe, we are officially changing our name to PayPal Giving Fund. We look forward to continuing our service to your organization under this new name. Please note that we have updated our Nonprofit User Agreement and Privacy Policy to reflect these changes. Otherwise, your day-to-day site experience will remain unchanged, and you'll get monthly payouts just as you do today. If you have questions, please contact our Community Care team.
  15. I'll be there even if I have to put gas in my car. ;-) Looking forward to seeing Moxie and Jeff, and everyone else. Bob
  16. Psiloscribe

    Carl Is Dead

  17. Psiloscribe

    Carl Is Dead

    I have to say, this saddens me greatly. Although there have been many people in the UK that have worked hard against all the roadblocks to get help for people, and to make information available for people, no one worked harder and longer than Carl. And Yes, Phil was right there alongside. No one stood up for the rights of people to get information and make up their own minds, than this man. When it was impossible to get the info out to the masses, he took it upon himself to get it to those that were seeking help, personally, one at a time. A man that was not afraid to make enemies if thats what it took to help those that needed it. I also just heard from him shortly before Christmas. I am shocked by this and I'm sorry Phil, that you've lost such a great friend. This is Carl RIP my friend. We truly have lost a cluster hero. OK, so I had to edit this already. Still don't know all the right words but when I posted it, I noticed the MLK quote on the bottom of my post. It seemed to fit him perfectly. I will leave it at that.
  18. [imghttp://i23.photobucket.com/albums/b392/psiloscribe/100_1062_0101-1.jpg][/img] #1 #2 #3 #4 #5 #6 #7 #8 #9 #10 #11 #12
  19. Psiloscribe

    Happy New Year to everybody !

    Happy New year everyone!!! I give you the words of the Dalai Lama "Along with love, compassion is the face of altruism. It is a feeling from deep in the heart that you cannot bear othersÂ’ suffering without acting to relieve it. As compassion grows stronger, so does your willingness to commit yourself to the welfare of all beings, even if you have to do it alone. You will be unbiased in your service to all beings, no matter how they respond to you." Thanks to all here that practice what he teaches. Bob
  20. Psiloscribe

    Vibration technique

    I like the vibrator idea. Years ago I used a professional model hand held massage machine. It had springs that wrapped around the palm of my hand to hold it in place and sat on the back of my hand like a power pack. I got it from my chiropractor. I remember it helping a little. I think you will find the 02 much more help though. At least I hope it works for you. Skullcap on the other hand.... It is supposed to be used WITH any of the psychedelic treatments. Not as a treatment by itself. It does help with the anxiety that sometimes hits people when using the psychedelics. Some people say it works wonders in making the dose much more relaxing. For anyone looking for a natural form of valium......try skullcap tea. Helps some people relax, others use it as a sleep aide. Bob
  21. Psiloscribe

    Thank ful

    Thaqnk you Bubbles.... I would also like to thank everyone that participates here. it is a very important destination for many people and it takes everyone to keep it going so well. Thank you to those that ask questions. It gives people a chance to pass along information that helps people deal with life with clusters. Thank you to those that continue to offer not only accurate information but in a way that allows people to make their own decisions based upon ALL the information. We've always remembered that works for one *may* work for others and that we are all different. Thank you to everyone for participatiing and knowing that helping others carries it's own reward and helping just because, you can. Happy Holidays everyone and, thank you, Bob
  22. Psiloscribe

    a sad hello...

    Hello DG, Congratulations on the new baby. As to the 02, I know how stubborn clusterheads can be (I am one lol) and although it os one thing that helps us get through the clusters, it can also be a detriment. (or so I'm told) One thing about using the psychedelics, is that often, they make 02 work even better than it did before using them. Not sure why but it's something I hear over and over. Also, no one is "strapped to the 02 tanks" ...unless its working and it's worth it. I know I'm probably preaching to the choir, but thats always so much easier than preaching to someone that needs it LOL. I hope the seeds start working soon. Bob
  23. Psiloscribe

    This is hell!

    Wow, nine shots of imigran? yes I'm sure you know how dangerous that is. Serotonin syndrome is very dangerous. I'm glad he's ok. Even mixing busting with imigran or any of the triptans is dnagerous. They all work in similar ways and is just one of the reasons for a break between psilocybin/LSD and triptans. I dont know what kind of shot the doctors gave him during that nerve shot treatment, but if it contained steroids like some do, that shot may have had some blocking issues with the mushrooms. I dont know how much time there was between the shot and the dose but one reason for the shot is that it's "long lasting" and those steroids can take longer to clear the system than the usual 5 days. I'm sorry he is in such a desperate place with these attacks. Even in chronic cycles, yes it's common to have "high cycle" periods as well as low cycle periods over the year. Many times they follow the seasons just like with episodics. Yes the morphine will block the psilocybin. And longer than a day. He also used (alot of) imigran recently. For best results he should be away from both narcotics and triptans for at least 5 days prior to busting. I know how difficult it can be, waiting, especially without an optimum 02 set up. I would hope that when you get the proper set up, he will be able to get a little more rest, and feel stronger, and be in a "better place" for his next dose of psychedelics. Best of luck Bob
  24. Psiloscribe

    D3 Survey

    We are very interested in your experience with the vitamin D3 regimen. If you would take a couple of minutes to answer the questions here, it would be much appreciated, and helpful to others with CH. You can post your answers here (cut and paste questions) or PM them to me or to CHFather. Thank you! To make this survey reliable, we would like to hear from you only if you tested the whole basic D3 regimen: something each day in the ranges of 10,000 International Units of vitamin D3; several calcium citrate tablets; and 3-5 mg. of Omega-3 fish oil. (We’re considering the lemonade/limeade to be optional.) We are just as interested in hearing from you if the D3 didn’t work as we are if it did. 1. Are you: A. Chronic B. Episodic 2. With the understanding that there are many factors affecting CH, do you feel that the D3 regimen: A. Did nothing or nearly nothing for you. B. Eliminated your headaches. C. Helped with the severity of your headaches but didn’t eliminate them. D. Helped with the frequency of your headaches but didn’t eliminate them. E. Seemed to help for a while but then stopped showing anything positive. If this is true for you, how long did this improvement last before stopping? 3. If you experienced positive results, how long were you on the D3 regimen before you experienced them? Thank you very much Bob
  25. Psiloscribe

    2FunGuys - exciting news!!!!

    Very cool Tucker......and thank you VERY much Bob