shocked Posted April 29, 2010 Share Posted April 29, 2010 Bob Wold Horizons 2009 Synopsis Cluster Headache is not what you usually think of when someone says they have a headache: the pain will wake you up out of your sleep and is so searing painful that people are known to pull out their hair or bang their head against the wall to distract themselves from this pain. Indeed, cluster has been nicknamed “suicide headaches.” You will leave this talk knowing a lot more about cluster headache and the story of how patients just like me came to find in psilocybin and LSD a profound medication that helps more than the medicines we currently can get from our physicians. Clusterbusters is doing something about that: we work closely with Dr. John Halpern of McLean Hospital/Harvard Medical School and are, in fact, sponsoring Dr. Halpern’s clinical project to evaluate psilocybin for people with episodic cluster headache. To bring research with psilocybin to Harvard has been a long and complicated road, but you will learn why it is the most important one to take: many lives depend on it and we want to count on your support. Over the past year, our work has expanded to include the addition of a new and very exciting direct offshoot of our psilocybin work. This successful study featuring breakthough treatment results will be announced at this conference Biography Bob Wold is founder and President of Clusterbusters, Inc., a 501c3 non-profit charitable organization dedicated to the research of cluster headache and to support people with cluster headache and their families. Based in greater Chicago with his wife and 4 children, Mr. Wold has talked to 1000s of cluster sufferers. In fact, over 25 years of his adult life was burdened with severe cluster headache that was resistant to all standard treatments. That all changed after he tried psilocybin, which has helped regain control over this illness for him… and now hundreds to perhaps thousands of other cluster headache patients all over the world. He and Clusterbusters are currently involved in persuing the approvals for the clinical research required to allow these much needed treatments to become available to everyone. Treatments that far exceed anything currently available through conventional medicine. Treatments that can eliminate the suicide option that far too many people still choose. shocked Quote Link to comment Share on other sites More sharing options...
Guest Posted April 29, 2010 Share Posted April 29, 2010 Thank you so much Bob for all you do. What an excellent presentation, & it's good to see you looking so well. CArl... Quote Link to comment Share on other sites More sharing options...
Cassidy Posted April 29, 2010 Share Posted April 29, 2010 I don't know what is going on with me, but I seem to be in a very emotional state of mind. I watched the presentation and just sat and cried. To see and listen to Bob makes me realize a lot of things I have gone thru with this disease are common to so many others. The long nights alone with nothing but pain and questions about what is this? Watching the clock, thinking just another 20 minutes and it will be over. Two more hits and it will be daylight. Not only are our meds. magic, but the people who discovered this treatment are magic also. Leslie thank you Quote Link to comment Share on other sites More sharing options...
Dallas Denny Posted April 29, 2010 Share Posted April 29, 2010 I'm right there with you Leslie!! Tears runnin down my cheeks as I type......Well Done Bob!!! DD Quote Link to comment Share on other sites More sharing options...
Lee_Ann Posted April 30, 2010 Share Posted April 30, 2010 Excellent presentation. Thanks for telling us about it Denny. Thanks Bob for everything you are doing. Lee Ann and Dan Quote Link to comment Share on other sites More sharing options...
Bonkers Posted May 1, 2010 Share Posted May 1, 2010 Wow! Was that cool, or what? Sure glad you're out there pulling for us, Bob. Thanks a lot! Also glad he's such a handsome fella. It (he) gives our cause a little more class. Probably draws the ladies, huh? Quote Link to comment Share on other sites More sharing options...
tingeling Posted May 3, 2010 Share Posted May 3, 2010 My deepest respect to Bob, and the others who`s on his side one the way. Thank you, clusterbusters saved my life, and now it has a face. Quote Link to comment Share on other sites More sharing options...
shaggyparasol Posted May 3, 2010 Share Posted May 3, 2010 What Tingeling says goes for me too! When do we organize and go for legalization? Too much evidence to discount the effectiveness. Count me in! > --Shaggy Quote Link to comment Share on other sites More sharing options...
Nelis Posted May 6, 2010 Share Posted May 6, 2010 THANK YOU BOB! Your effort is priceless. The knowledge about clusterbusting gave me the courage to face this debilitating disease. Thank you! Nelis Quote Link to comment Share on other sites More sharing options...
koolkarnt Posted May 13, 2010 Share Posted May 13, 2010 I wonder.. is there any connection to CH and high intelligence? it would make me feel better about it all.. Quote Link to comment Share on other sites More sharing options...
Brew Posted May 15, 2010 Share Posted May 15, 2010 I wonder.. is there any connection to CH and high intelligence? it would make me feel better about it all.. I don't think so. I've met a few really stupid clusterheads along the way. Even I can be pretty stupid from time to time. Here's what makes me "feel better about it all" - were it not for CH, I never would have met some of the finest human beings that have ever walked the planet. Men and women of true character. So in a way, it is a left-handed blessing. There may be some higher purpose in it all, but I don't reckon I'm smart enough to figure it out. This is the closest I've come. Quote Link to comment Share on other sites More sharing options...
Bonkers Posted May 15, 2010 Share Posted May 15, 2010 Koolkarnt, Yes, of course. Only the brightest of the brightest can ever hope to get CH. There, feel better? Ron Quote Link to comment Share on other sites More sharing options...
1961mom Posted May 15, 2010 Share Posted May 15, 2010 Thank you Bob! Thank you, Thank you, Thank you! Along with all the beautiful associates, researchers, scientists, side-kicks and minions of our quest! I cheer & cry & cheer again as I realize FINALLY there is HOPE. I fit the description to a T (in the Horizons 2009 video). Never took a recreational dose in my life, 49 years old, went from episodic to chronic (beginning May 08) and desperate until my first dose on Mother's Day, May 9th, 2010. Procuring my 2nd dose today! I think of one of my favorite lines in Gone With The Wind..... "As God as my witness I shall never go hungry again!" Deepest Gratitude, Cindy 1961mom Quote Link to comment Share on other sites More sharing options...
swiftlaw Posted May 19, 2010 Share Posted May 19, 2010 Thanks Bob. Its been a long time Man. A long long time. Quote Link to comment Share on other sites More sharing options...
domino Posted May 19, 2010 Share Posted May 19, 2010 Wow, I thougth I was watching myslef having an attack.....I really did, I have been having tese damn things since I was 20, I am almost 40 and have never tried anything but the good ol, verapamil, prednisone, depakote, lithium, etc... I have even been given stadol, etc... but nothing does it for me, I had many tests done, etc. they thought I had a brain turmor as well, I have spoken to my neuro about this treatment plan before and he has very much frowned on it. I started a cycle this past few weeks and let me tell you this has got to be the worst one I have had in years, I havent had one in 2 years and then boom here they are hrder than ever, maybe I am so much older now that I cant take the pain as much now a days but geez they are horrible this time, and lucky me 6 to 8 weeks to go. This was great and gives me a lot to think about. I have also been told that they will simply go away after I get older, I find it is getting more frequent as I get older, in the begening it was every 5 years, then 3 then 2 they seem to be getting closer as I get older not the other way around. I get them 2 times during a cycle year, looks like this year is going to suck. Mine never change sides. I do get freaked out a little, I used to know exactly when they would be here during the year,I always have them in may/june but I used to never get them in November, it seems they have become unpredictable in when they will be here. Anyone else ever get this or have been told this. 1. they will go away as you get older and you will possibly hav them occassionaly 2. you will outgrow them 3. you will become chronic - i was also told this once as well. 4. did they become more hard to predict as you got older? Thanks Tony Quote Link to comment Share on other sites More sharing options...
Christine Karper Posted May 27, 2010 Share Posted May 27, 2010 Hi Tony, You asked...Anyone else ever get this or have been told this. 1. they will go away as you get older and you will possibly hav them occassionaly 2. you will outgrow them 3. you will become chronic - i was also told this once as well. 4. did they become more hard to predict as you got older? Yes- I was told all of this...what came true for me- I went chronic after 15 years of being episodic. My episodes were 6 months ha's then 11 months no ha's. Finally turned chronic and they have been unrelenting for 6 years- I am about to have the ONS procedure to see if it will help-- I am becoming refractory to all meds. Chris Quote Link to comment Share on other sites More sharing options...
Brew Posted June 1, 2010 Share Posted June 1, 2010 Chris - Have you tried the clusterbuster route yet? If it were me, I'd certainly be exploring it before I'd allow anyone to cut into my head. Quote Link to comment Share on other sites More sharing options...
Sandi Suddaby Posted June 2, 2010 Share Posted June 2, 2010 You are our hero and inspiration. Thank you for all you do. Sandi Quote Link to comment Share on other sites More sharing options...
alleyoop Posted June 8, 2010 Share Posted June 8, 2010 You are our hero and inspiration. Thank you for all you do. Sandi DITTO!! Quote Link to comment Share on other sites More sharing options...
davidj Posted June 9, 2010 Share Posted June 9, 2010 Wow, been doing my bust for a month and finally saw the video. All I can say is Thank God for Bob Wold!! David Quote Link to comment Share on other sites More sharing options...
Mad6string Posted June 9, 2010 Share Posted June 9, 2010 Bob, your dedication and unfaltering persistence is amazing. The wealth of knowledge you pass on to others just like me priceless. If it weren't for you taking me under your wing, I'm sure I wouldn't be here to thank you today. We all love you. I can't give you enough praise to measure up to what you deserve. Donnie :'( Quote Link to comment Share on other sites More sharing options...
grannybev Posted June 9, 2010 Share Posted June 9, 2010 Hello everyone, my name is Beverly and a cluster sufferer. I have had these headaches for 30 years, since I was 20. I currently am in my 9th week of my episode. I have been taking D.H.E. injections 1-2 times a day. This has worked for the past 18 years. I am curious about anything new in the preventative stage? Any suggestions? I have an appointment with a neurologist tomorrow. Much appreciated. Quote Link to comment Share on other sites More sharing options...
Mad6string Posted June 9, 2010 Share Posted June 9, 2010 Hi Beverly, have you ever tried the mushrooms or LSD in the past? Mad6string Quote Link to comment Share on other sites More sharing options...
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