Psiloscribe

This is never a good thing for an organization that relies upon donations and the good intentions of others. There is a donate button on the bottom of these message board pages but for some reson they don't always work properly. Best thing to do is go to our website http://www.clusterbusters.com/donations.htm and donate from there or mail your donations to: Clusterbusters P.O. Box 574 lombard, Il 60148 Thanks Bob

I try to keep all the fundraising stuff in one area but thought it was a good time for a reminder in the general section. I know a lot of people will be doing some shopping online and a great way to raise funds for CB is to use the IGive option. All the details can be found in the Fundraising forum threads but the link to join is http://www.iGive.com/Clusterbusters This site also lists all the available coupons for the stores so you can find some great bargains without waiting in line at 3am ;-) Thanks, Bob

A very generous, anonymous Buster has offered to match any and all donations up to a total of $1000.00 between now and the end of the year. That means that your $10.00 donation becomes a $20.00, $25.00 becomes $50.00 etc. If you add in the tax deduction, that makes it almost free So, if you are so inclined,and decide to make a donation, now is a great time. Thank you. If you use paypal or a check, just mark it with "matching" and we will make sure it's handled properly. Bob

I wanted to pass along some preliminary information so people can start planning. The 2011 Clusterbuster Conference will take place in Chicago over the September 16-18 weekend. The hotel information should be available soon. Doug and the committee are going over the results of the survey and are putting together an outstanding program. Hope to see everyone there More to follow. Watch this space Bob

Happy Thanksgiving everyone. Bob

Just so everyone knows, this is an official Clusterbuster project that Tommy has undertaken for us. For those that know know him, Tommy is an original Buster so has been with us from the beginning. He is a Clusterbuster Trustee and has been our unofficial historian, helping us track data and build our files. Any help you can give him/us on this project is greatly appreciated. Bob

It doesn;t make much difference. They tell you that because it can make you tired. if you're having night time hits and you're hoping this might help, I'd take it about an hour ahead of bedtime. It is considered rare but cycles can switch from one side to the other during a cycle. It can also change sides from cycle to cycle but but most people stick to one side or the other for the most part. Bob

Hi Val, First off, congratulations on pushing theough the detox. We know it isn't easy. It can be even harder then breaking an addiction to drugs or alcohol in that it has elements of both physical and mental hurdles to overcome. Yes, some people are lucky enough to have similar results with only a dose or two. Congratulazioni. Goda di. Bob

Thanks very much Matty Best way for dinations is to go here : http://www.clusterbusters.com/donations.htm if you want to donate online click on the donate button. Or checks can be mailed to Clusterbusters P.O. box 574 Lombard, IL. 60148 if you want it to go to BOL research, mark that on the donation or check. Bob

Good thread topic and discussion. Thanks to all. The original theory behind the usual dosing strategy is based in several areas. It begins with the thought that it is the "whack" the dose provides that breaks the cycle. One of the first analogies, similar to the snow globe, is that our hypothalamus is like an old tube radio that goes out of sync and needs a "whack" to regain its tuning. Re-dosing the next day usually doesn't produce this "whack" so its not only wasting medicine but prolonging the next dose that will provide this whack to the system. Over the years, many people that don't have complete results from standard dosing have tried some different techniques. One that I do suggest for some people is re-dosing when the first dose begins to wear off to increase the length of the "whack" so to say. It does work sometimes. Some people have reported using repeated dosing over several days with limited success. In most cases this does just waste medicine and for most people its hard enough to come by as it is. It is one way though of enabling (most) people to increase the size of the dose without increasing the hallucinogenic effects. It is something we have looked at in our study design. One theory behind repeated dosing is to keep the receptors bathed in the hallucinogen to try and retrain them to "play nice" and work properly again. I've tried it and although I was pain free while on the doses, the clusters would return. I'm one of those that need the "whack" or two. The success rate for the standard dosing is still very high. It would be wrong I think to suggest that anyone try a different method to begin with. Until we can compile similar or better numbers with a different strategy, I feel everyone should start with standard dosing. If that doesn't work it doesn't hurt to try new methods. Anyone that does should report their results. It may be that we can do better, which is why we are all here. Bob

For those wondering what is happening with research on BOL for clusters here is the latest. It was felt that the fastest track to getting the followup research funded and completed and getting BOL to the market was to form a new company to do just that. Hoping that one of the large pharmaceuticals would take up the case to replace their existing triptan market isn't likely to happen any time soon, although I'm open to a phone call A new company called Entheogen has been formed and its first priority is to get the funding needed to bring BOL to market as a cluster headache treatment. Feel free to stop in at it's new website: http://www.entheogencorp.com/ Check out the "community" section and please sign up if you want to get updates as well as helping us build a database of cluster sufferers. If you might like to be considered for participation in future studies, please sign up. If your doctor might like to be involved in getting updates or possibly even acting as a satellite for a study, please pass along the website URL. Some of this information was disclosed at the 2010 Clusterbuster Conference in Portland. Hopefully by the 2011 conference in Chicago, we'll have even bigger news to break. This goal of this company is to bring the first ever prescription medication specifically brought to market for cluster headaches. The first ever prescription medication developed to break and/or postpone cluster headache cycles. This does not effect our research work with psychedelics or any of the other avenues Clusterbusters is working on. We will continue to open every door we can and follow our work wherever it leads. Bob

Roger Waters comes to Cali in December. Sir up front and he'll loosen up those bones!! Or at least leave you comfortably numb!! Bob Rock on Ting....you are in charge of your happiness in life.

I'm very sorry Tingling, Official words from a lawyer always have a purpose and the truth or how those words affect people have little to do with that purpose. Bob

02 as a preventive has been studied and in general doesn't work. Safety issues aside, using low flow with a nasal canula just won't counteract the changes caused by an oncoming attack. Bob

You go visiting people during a cluster attack? Are you using imitrex tablets? If so the injections and nasal sprays don't take nearly as long to kick in...FWIW Some steroid injections can last longer than oral tablets. With the increased effects on your system come the increased side effects. There is no research that shows steroids break cycles. Almost every cluster sufferer here will tell you from experience that they can give you a short break but the cycles return and oftentimes stronger than before. Bob

Quick changes such as air travel can trigger clusters, if you are in cycle. That said, flying to and landing in Denver at its altitude might be one of the safer places to land IMHO. Physically speaking, you should be good to go. On the spiritual side, don't let cluster fear guide your life any more than necessary. Its one thing to pass on a dinner or movie. Its another to pass on a trip that leaves plenty of opportunity to enjoy life. Our best memories are only moments in time. Its not usually "that week on the Islands." Its more likely to be, "that moment on the beach on the island." Go and find that moment!! Bob Send us a postcard

One gene down and 24,499 to go. Just happy they are looking!! Bob Thanks BobB

When people are in cycle, the only pain that comes close to, or exceeds the cluster pain, is that which we feel from the lost time with our families. The shared goals and ambitions and family obligations we feel we've fallen short of holding up our part of the bargain. When the cycles end, the first thing we want to do is make up for lost time. Reconnect with the spouse and kids we've hidden from more often than a squirrel hides nuts. It takes time to repair some of the collateral damage a cycle can do. No one should ever feel bad about taking care of business at home when a cycle ends or when a chronic gets into a low cycle and can get out and breath some fresh air. That said, one of the most important aspects of a support board like this is for people to be reminded that others do get better. Reminded that cycles do end and you will be able to get to one of those soccer games. So, we're always happy to hear from people that are feeling well and making life work. Bob

Hi Ting, yes she is! As Matty said (thank you Matty) you should be very careful about how you proceed and what you put into that pure child of yours. I know you are very careful and thoughtful in these matters and you will make the right decisions for her. I would be very careful about using anything to treat her headaches at this point of her development. Yes I would be careful of even using oxygen. Neurolologically speaking she has pretty much completed physical growth but it continues to make adjustments based upon environmental factors. These are some of the things we can have an effect upon. That said, you are not responsible for your clusters and you aren't responsible for whatever headache diagnosis she may or may not end up getting. And since we're all "family" here, we are all responsible for her care. Some children her age have been diagnosed with clusters. I have seen some kids go through cycles and have them stop, never to return. I would get in to see a specialist as Matty suggested, asap. I would also first try the water treatment. This is a very large increase in the water intake. Even with this though, you (and everyone) needs to be careful. It isnt discussed much but you can drink too much water. I would try having her drink ice water if she can, during an attack. Personally I think this might be what is behind the "waterX3" treatment. Most think its the increased water that helps. I think it may actually be cooling the vagus nerve by drinking cool/cold water. When she gets an attack, see if you can get her to do some sort of exercize. Make it fun if you can....maybe running in place with you?? See if she can beat you to the "Dark Side of the Moon" ;-) Put a frozen bag of peas on the sore "spot" on her head. I would begin a headache diary. I would not involve her in that. She doesn't need to be looking forward to the next headache. I would also keep track of whatever symptoms she mentions. I would not suggest any symptoms or ask her if she feels this or that.....She will be the one to best describe when and what she feels. Tell her that she, as you, has friends all over the world pulling for her. 8-) Bob

poet (p[ch333][ch8242][ch601]t) noun 1.a person who writes poems or verses 2.a person who displays imaginative power and beauty of thought, language, etc. Deny it if you must but it's always healthier to accept and take measured pride in one's own qualities and abilities. Bobw

Thanks for this. Very interesting stuff. Bob

Happy Birthday Donnie Give me a call when you get a chance, Bob

He can stay on the Magnesium. Good luck. Hopefully you'll see some change in those nasty nite time attacks soon.... hang in there, Bob

New Scientist http://www.newscientist.com/article/mg20727764.000-psychoactive-drugs-from-recreation-to-medication.html "Meanwhile, in a study at Johns Hopkins University in Baltimore, Maryland, funded by the Beckley Foundation, Roland Griffiths and colleagues have seen positive results in their study into the use of psilocybin as an aid to psychotherapy to treat tobacco addiction. At Hanover Medical School in Germany, a team led by Matthias Karst has been investigating whether bromo-LSD - a non-psychoactive form of the drug - can be used to treat painful cluster headaches." Bob

The wine glasses were a special run donation for the auction. I will check to see about future availability. They ARE very cool. Bob