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Everything posted by Psiloscribe

  1. 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
  2. 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
  3. 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
  4. 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
  5. 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
  6. 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
  7. Psiloscribe

    2FunGuys - exciting news!!!!

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

    RC Seeds waiting period question

    Hello Jackie, Yes Sunday night should be fine. Good luck. Bob
  9. Psiloscribe

    2012 Conference Pictures

    Ok, I KNOW there is a picture of CH Hell on this board somewhere...I saw it. Unless the Rio found a way to remove it. He was sitting at a BJ table, taking their money.... ;-) Bob
  10. Psiloscribe

    Cluster Headache webinar

    The National Headache Foundation will be hosting a webinar on Cluster Headache Oct. 30th and I wanted to let everyone know. Dr. Urban will do a short presentation, and then it will be opened up for questions from participants. IÂ’ve included the registration link below. Please feel free to share this with anyone else you may know that might be interested. http://www.headaches.org/content/nhf-webinars Bob
  11. Psiloscribe

    Maps conference

    I was thinking of going and then realized its two weeks away from the next DC trip for Headache on the Hill. Thats a lot of air miles in a couple weeks. I suppose *I* could stay home and work, send *me* to Oakland and take *myself* to DC. Bob
  12. Psiloscribe

    2012 Conference Pictures

    #41 stayed in Vegas ;-)
  13. Psiloscribe

    2012 Conference Pictures

    I've numbered them all in case anyone wants to identify themselves ;D Or make guesses or comments Bob
  14. Psiloscribe

    2012 Conference Pictures

    #39 #40 Sleepless in Las Vegas #41 [imghttp://i23.photobucket.com/albums/b392/psiloscribe/100_0967_0020-1.jpg][/img] #42 Yep, I'm the guy to see if you want what happened in Vegas, to STAY in Vegas...... 8-)
  15. Psiloscribe

    2012 Conference Pictures

    #29 #30 #31 #32 #33 #34 #35 #36 #37 #38
  16. Psiloscribe

    2012 Conference Pictures

    #13 #14 #15 #16 #17 #18 #19 #20 #21 #22 #23 #24 #25 #26 #27 #28
  17. Psiloscribe

    2012 Conference chatter

    Thought i'd put this on the General Board since its not about "official" conference info. Wondering who is going and why..... Also, for those that have attended one of our conferences, what is your favorite memory, presentation or experience. (or all the above) One of my favorite presentors wasn't a professional but was KaBoom's daughter Bailey. A very brave and well done presentation that touched upon the importance of family and the importance of support. It IS our best medicine. Some of our best moments don't always occur in the meeting rooms. One of my best was a large group of us up in a room afterwards with Mitch playing guitar. "Chillin" doesnt get much better than that. Bob
  18. Psiloscribe

    2012 Conference chatter

    I have to do some Photoshopping to protect the innocent. Yes there were actually a couple people that left Vegas, still innocent (at least that was the opinion of the District Attorney). LOL Bob
  19. Psiloscribe


    Anyone that might be interested in being interviewed by a couple of "prestigious" written media sources, please let me know. The writer would most likely wants to travel to see you, and would be most convenient if you were somewhere near the New York area. Doesn't need to be NY, but somewhere near.....Boston, DC, Baltimore? If you're close, we can work something out. PM me. Bob
  20. Psiloscribe

    Disillusioning first look into CH and Facebook

    We (Clusterbusters) does have a FB page so we can make announcements and have a presence. http://www.facebook.com/bob.wold.39#!/clusterbusters?fref=ts There are quite a few CH pages and you're right, there is a lot of bad info out there. And yes, when some of us try to give information, even just a simple link, depending on the list, we aren't treated well. Cindy here does a particularly good job trying to direct people to help. Between several of us we've been blocked or censored by several self proclaimed guru's that want to control their communities. There are also others from here that do their best to try and pass along good information ....you know who you are... Its difficult as there are so many pages and each one has its own personality depending on who made the page and why.... It all depends on who is running each page but there are some good things in that its possible to get the word out to a lot of people......if the page owners let you. We try to do our thing and offer up the information and have found some good support. You can also "friend" me at Cluster Buster ;-) http://www.facebook.com/bob.wold.39#!/cluster.buster.7?fref=ts Bob
  21. Psiloscribe

    2012 Conference chatter

    We have a lot more pictures to post. If there is anyone that would rather not have their images posted, we understand and just let me know in a PM. I'll post more early in the coming week. Thanks everyone for an amazing conference. We will be posting reports and updates as we move ahead here. Bob
  22. The auction was a huge success. thank you to everyone that not only donated items but to those that were so generous in their bidding. This year's auction was by far the largest fundraiser in our 7 years. We are all incredibly appreciative to everyone and the funds raised will go a long way in helping us continue to achieve our goals. Thank you all, Bob
  23. Psiloscribe

    First time conference

    we may set the venue, arrange the speakers, set the agenda, etc.....but it's the attendees that make it a success and the friendships that are formed, that make what happens, last long past the end of the conference. Much more to come but just wanted to share that and how we all feel that put these things together. Bob My biggest regret with them becoming larger each year is that I get to spend less time with everyone. My sincere apologies.
  24. Washington D.C. “Headache on the Hill” March 26 -27, 2012 Headache on the Hill is an annual event organized by the Alliance for Headache Disorders Advocacy during which healthcare professionals, scientists, and patient advocates urge congressional representatives to increase NIH (National Institute of Health) funding for research on headache disorders. This year, Clusterbusters joined efforts with the AHDA to bring specific awareness to the lack of cluster headache research and the dire need for effective medical treatment. Out of a total of 62 participants (including 25 M.D.s), Clusterbusters is pleased to announce that at this event we had the participation of 12 cluster headache sufferers and supporters!  Our group was incredibly motivated and inspirational to all they came in contact with, including other participants as well as the congressional leaders they visited.  Especially inspiring was the fact that most were in active cluster cycles, yet they pressed on with determination as they navigated Capital grounds, rushing from building to building, attending scheduled appointments with their Senators and representatives. When you see one clusterhead pushing a fellow clusterhead around in a wheelchair making their way through protesting mobs and armed guards, you know that they were there to make a difference, and to be heard! The AHDA ran a very well organized event. In preparation for the Headache on the Hill event, they scheduled all appointments with state representatives, conducted an interactive informative webinar, and also held an interactive training session on the afternoon prior to our congressional meetings. During this session, the presenters explained congressional operations and put attendee’s minds at ease by informing them what to expect when meeting with officials. Handouts containing essential data and talking points to be conveyed to congress were distributed and discussed.  Our mission on the Hill was twofold: 1.URGE CONGRESSIONAL HEARINGS ON HEADACHE DISORDERS. We asked them to examine the personal, social, and economic burden of headache disorders resulting from the lack of adequate research and the need for effective treatments and specialty care. •NO U.S. Congressional committee has EVER held a public hearing on headache disorders. •Cluster headache is reputed to be the most severe pain that humans can experience. More than half of patients have recurrent thoughts of suicide. Cluster headache is as prevalent as multiple sclerosis, yet the NIH has funded NO research on it in more than 25 years. •Only 290 U.S. doctors are UCNS Board certified as specialty trained in Headache Medicine. •Headache disorders lead to more than $31B in economic costs in the US annually, exceeding the estimated annual US costs of epilepsy, asthma and ovarian cancer combined. •Over the past 50 years, only one innovative drug (sumatriptan), discovered and developed specifically for migraine, has been approved for clinical use after priority review by the FDA 2.Requested the Senate to RENEW RECENTLY CUT FUNDING IN A DEFENSE DEPARTMENT BUDGET that was for study of headache disorders.  As budgets get cut, it is vital that we speak up and make “headache” research a priority! Funding to study how fast and far shrimp can move on an underwater treadmill does not get cut, yet “headache” research gets cut early and often. The difference? How many and how loud the voices are that are walking up and down the halls of congress! Hopefully, this trip helped put funding priorities into perspective.  My personal schedule included the privilege of advocating with Aukosua Stokes, the manager of Public Policy from the National Headache Foundation. We visited all the senators and representatives from Illinois, including the office of Senator Mark Kirk who holds some very important positions in the Senate. Although Senator Kirk was unable to attend due to a recent stroke, his staff expressed definite concern regarding the neglect of headache disorders, which will be brought to the attention to the Senator.  Additionally, I was able to meet with all of the representatives from Virginia, the state in which Clusterbusters is incorporated. Over 150 representatives were visited and asked to recognize the need for further research funding and treatment options.  Along with all the facts and figures and personal stories we were able to present, some of us also used a short video clip of “Cluster Chuck” during one of his attacks. This was especially effective in getting the attention of the lawmakers. Thank you, Chuck, for always allowing us to use your video. It DOES make a difference! Most people in our group had written a short personal story of how clusters have affected their lives and the lives of their families. These stories made a HUGE impact in D.C.! We urge everyone to consider submitting their CH story, as Clusterbusters will compile these into a booklet form for presentation at future advocacy events.  These short stories (1000 words or less) are very moving as they help others better understand the impact cluster headaches have upon each of us and our families. You can PM me for details on guidelines. In speaking with the attendees during and after the meetings on “The Hill”, it was clear that we made people sit up and take notice. We ALL talk with people every day that say they wish they could do something. We were able to talk to people that CAN do something! It was empowering for those with cluster headaches to have their concerns heard by people that have the power to make a difference. People that can, and will, in the future speak for us to agencies like the FDA and the NIH and get people working for us. The president of the AHDA, Dr. Robert Shapiro, repeatedly thanked Clusterbusters for our participation. Concurrently, joining with those in the Alliance, gives everyone in the headache disorder world, a louder voice. We all know and appreciate the differences between clusters and migraine, clusters and trigeminal neuralgia, clusters and the other 140+ different headache diagnoses. But as many differences as there are, there are also many similarities. These similarities aid in research and finding effective treatments. Another stop we (Clusterbusters) made while in DC, was a trip to an agency called SAMHSA. This was not part of the H.O.H schedule but was a Clusterbuster, Cluster Headache project. This agency is the Substance Abuse and Mental Health Services Administration (http://www.samhsa.gov/).You may be asking why we would want to stop in there, but there are very good reasons to work with them. I will report on this meeting in a separate thread in this advocacy forum. Please watch for it to be posted as it will contain some very important and exciting information. As to the event as a whole, I cannot thank Cindy Reynolds and Kaboom from our Advocacy Committee enough for all their work in putting this trip together. A lot of time and effort went into organizing and getting a dozen cluster people there, in cycle, on short notice, and being prepared to make an impression. The coordination of something like this is very difficult and demanding. If you know what it’s like to set up a short trip for your own family, try setting one up for 12 strangers from all over the US! It’s difficult enough just to schedule meeting for coffee in the morning let alone a complex trip like this. Thank you both very much. I would also like to personally thank all the remaining members of the “D.C. Dozen” who spoke on behalf of all cluster headache sufferers: Louise Barham, Adam Barham, Larry Schor, Charles Reibold, Lee Markins, Becky Ulissi, Billy McConnell, Eva Nemeth, and Crystal Smith. Not only for what they did individually, but also for what they became as a group. None of us are paid lobbyists or do this for a living. It can be very intimidating to be walking the same halls that people like Lincoln, Roosevelt and Kennedy walked. The strength and determination that everyone pulled from each other was evident and it inspiring to see what people could do when surrounded by the support of a group. This was our first event with the Alliance and I can tell you that no one can be prepared to meet a dozen, impassioned, dedicated, ready to be heard, card carrying cluster sufferers. We DO make an impression. Its one thing when we all get together at one of our cluster conventions. It’s something else when a cluster convention arrives at someone else’s party. Those of us on Advocacy Committee could not have been more proud of everyone that came and represented people with cluster headaches. This event was a HUGE success in bringing awareness to the severity of cluster headaches and the need for more funding for research and education! Thank you to everyone who attended, to those who signed the Alliance for Headache Disorders petition, and to those who make financial contributions which enable us to continue our advocacy efforts. With the help of OUCH and other individuals, Clusterbusters was able to supply some of the attendees with partial scholarships, allowing those that would not have been able to make it otherwise, able to afford the trip. If you missed "Headache on the Hill" this year, we hope to see you next year! Bob Wold
  25. We are getting down to the wire folks. the cutoff date for booking rooms at the Rio at our VERY reduced rate is August 19th. They have a large convention going on at the same time so they won't be holding any extra rooms for us. If you are thinking about going, I would suggest booking asap. We know it's difficult for Clusterheads to book anything too far in advance but if you need to cancel, thats better than waiting and paying nearly double. The link for booking is: https://www.totalrewards.com/hotel-reservations/main/?propCode=RLV&groupCode=SRCNP2 Bob