Psiloscribe

Dr. Halpern's Presentation Doug discusses 02 masks Jack, Bob & Dr. Halpern Gathering for lunch 3/4ths of the Clusterbuster Board of Directors Dr. Halpern & Dr. Dale Carter Allen & Daniel Dan, Denny & Lee Ann Allen, Sherri, Marsha and Michelle new Clusterbuster wine glasses in the foreground ;-) Daniel, Dan, Lee Ann & Doug Shellie and Cindy Joseph, Dr. McGeeney, Doug & Darrell Columbia River Gorge More to follow if anyone would rather not have their pictures to appear, let me know and I will remove the pics.

Yes, Mexico recently changed the legal status on mushrooms and others. Xeno, are the "legal" or decriminalized? I seem to remember 6 grams of dried mushrooms being ok to possess. Is that correct? Xeno has been very invloved in Clusterbusters from the beginning and is usually the big hit at conferences he attends LOL. Not sure if he is serious or just looing for a date, or both?? LOL Bob Also thinking that details might be best discussed in IM

Just got back from Have a lot to report and many people to thank. Will do that when I get unpacked and organized!!! Bob

We have looked at DMT and although we don't have a lot of reports to go on, it may be even more effective than LSD. But, the trip associated with DMT is much more hallucinogenic. In effective doses, if you "see" Alice on LSD then you might see Alice turn into a mushroom on DMT. It's also harder to control dose sizes with DMT since it is so powerful. it's one thing if dose sizes are controlled in a lab and you could buy the pill, but accurately determining the dose on the kitchen table is next to impossible. The difference between Sansert and Bromo-LSD is that Sansert is required every day as a preventative. If you need to do something every day for the duration of the cycle, just about everything can be toxic. Even Twinkees. Bromo-LSD only needs to be taken a few times to break the cycle. Sansert won't break a cycle, BOL (Bromo-LSD) will. Big difference. Also, Bromo can be made without going through the LSD stage. I don't know if that is true with ALD-52 and that alone changes the legality issues involved. off to meet a bunch of clusterheads!!... Bobw

Whether we like it or not, research is driven by the pharmaceutical and medical device industries. That is where the money for the research comes from and they decide on the directions we take. Although some of the decision making is based upon profits, they are also looking for new things that will work better. One, that will do what they are in the business of, helping people, and in turn, feed profits and more research. So, the goal is to bring to market, something that works better than already exists. That's our goal also. Something we all want. Unfortunately many things have been brought to the market that aren't better and oftentimes worse. I know I tried my share. That said, we rely upon these companies to help us. I have no problem with anyone making money. Hell, I hope someone cures clusters and buys Microsoft. The cure most likely will not come from the monks in Tibet or the Amish in Pennsylvania. (Come to think of it, they may have the cure and we'll never hear of it). The National Institutes of Health spent a total of 8 million dollars on headache research last year and as paltry a sum that is, not one dollar of it was on clusters. The Pharma's have done some great things and have helped millions of people live longer and better. Clusters aren't one of their strong suits though. Almost every pill we're offered was designed to help conditions other than clusters. They haven't given doctors much to work with when it comes to clusters. "Here, try this. It helps migraines maybe it'll help with clusters" "Here, try this device. it helped Parkinson's patients, maybe it'll help cluster patients!!!" ????? I do wonder alot about the mixed signals we get sometimes though. At the last OUCH conference, Dr. Goadsby said that he felt that in a few years, the ONSI and DBS will be thought of as barbaric. Is this new device that much less barbaric? I guess I'm ahead of the curve because I already think they are barbaric. He is also quoted as saying, in reference to psychedelic treatments, that medical science should be ashamed of themselves if the best they can offer is a 60 year old drug that causes hallucinations. All I can say to that is, and I really don't want this to turn into a bash the professions or professionals thread, but, suffice it to say that there should be some shame now that this drug has sat silent for 60 years, hidden away even though people knew it's potential. It hasn't been 60 years because it doesn't work or because something better has been found. Can the same be said about penicillin? Still seems to be pretty good stuff 80 years after it was discovered. Good thing the side effects are not hallucinations and only consist of: "The most common reactions to oral penicillin are nausea, vomiting, epigastric distress, diarrhea, and black hairy tongue." Have a good day everyone. We're all fightin the good fight. We're all in this together and everything moves us forward. Bobw

If your doctor is keeping up with headache research, then he or she knows about our results and this research. We've made presentations at international headache conferences and have been very well received. We've been published in the top medical journals. Heck even the fake doctors on TV know about us as we made two episodes of House. During the research for our first 53 person case series, the researchers that viewed the patients medical records found that although every doctor knew their patient was using psychedelics (since they forwarded the medical records for the study) very few made any mention of psychedelic use in the medical records. This would have been ommitted for the privacy of their patient. Almost all doctors that find out about their patients use of psychedelics has been supportive. Most fall within a response of: "Good luck, let me know how it goes" to "Good luck" and putting their fingers in their ears and going "LA LA LA LA LA LA LA" ;-) There may be others that I'm aware of but after all these years, I only remember one person being told that if they decided to use psychedelics, he couldnt treat her any more. This was a 70 year old woman and she got up and left and found a new doc. Bob

The reason MAPS was listed for Cluster donations was because they were around before Clusterbusters had our non-profit status approved. They would then donate the money back to Clusterbusters. We've been an approved charity for years now so all tax deductible donations can be sent directly to; Clusterbusters P.O. Box 574 Lombard, Il. 60148 Bob

I always had the same problems with apria. The company I used to use was sold to Apria and they were never anything but problems from day one. From over billing to delivering the wrong orders, Several times they would not pick up all the equipment until the following month arrived so they could bill for another month. We also had to force them to remove continued billing after the equipment was picked up. Another trick was automatic deliveries without them being requested. I once had about 30 tanks in my house. I should have sold them. I know that they had NO idea how many tanks I had. Bobw

It all depends on how dry thay are and then how fine you grind them. Also then, how tightly you pack the capsules. Make them up and weight them. Find out what your recipe produces. It is a good idea to do this especially because of what Xeno said about getting constant doses. Different sized shrooms can have drastic differences in psilocybin content per gram. Tiny "aborts" are packed full of psilocybin. if the larger ones are allowed to grow past the astage where the veil opens, the psilocybin per gram of weight will begin to decrease. Mix and grind them all up to get a constant, known potency, from cap to cap. Of course this is all just good information to hold onto in case they ever make them legal and you could injest them. ;-) Bob

It messes with the "D" receptors which isn't necessarily a bad thing as far as we're concerned but I would probably avoid anything that effects the dopamine receptors and regulation. If you titrated upward when you started, you should probably reverse that as much as possible and not just stop taking it. There aren't any specific warnings about missing a dose so that should be ok. It has a half life of 8-12 hours depending upon age so after a day you could still have 25% of it in your system. Anyone thinking about dosing should always talk to their doctors and/or pharmacists when you get new prescriptions just to get an idea of what needs to be done if you want to stop that med in the future. Actually, everyone should always know that info. good luck, Bob

If anyone calls to book a room and can not get the dicounter rate, please send me an IM before booking. Bob

I suppose any nasal spray that could be an irritant could cause some problems. Mess with the nerve ganglion in the back of the sinus cavity and you could be triggering a sensitive area. Nasal sprays are absorbed very quickly so it would be difficult to wash them out. My main concern is that you are a Twins fan. Oh my Leslie. Thats a trigger if I ever heard one!! ;-) Bob Go Sox!!!

I just wanted to thank everyone for participating on the message board. I think that all the different posts and different people participating are important to making this a successful place. Ya know, after over 15 years on online support groups, I've seen some wonderful things happen. Its not just the people that offer some of the more "expert" advice or those that post alot, that make a board successful and vibrant. I do appreciate those that are posting the more technical stuff. Sometimes though, I've seen the most innocuous post make a huge difference in someone's life. A mother mentioning some silly thing their kids did just might catch another mom in a blue mood and being reminded that things will get better and be worth it going on. A truck driver thinking he can't go another day sees a post from another truck driver with a smile on his face and thinking if he can do it, so can I. (Just examples. Any similarity to real people is purely coincidental and unintended Sometimes it doesn't take much to trigger some hope for a brighter future. Just logging on and seeing others posting reminds people they are not alone. It doesn't need to be a post about the latest research, or the best set up for 02. It's just..being there. Sometimes I think that doctors write us new prescriptions just to give us a little hope and to get us through another week, another month. You are writing prescriptions right here, every day. Only positive side effects and no rebounds, lol.... Thank you Bobw

Her doc is definitely not an expert in cluster headache treatment. The clue is that she got amitriptyline instead of oxygen. If she got a cluster diagnosis and scripts more often prescribed for a migraine diagnosis, from the same guy, she should be looking around for a new doc or a headache clinic IMHO. I'd start with a script for high flow 02 and proper mask set up. That alone might make life easier and provide enough relief to allow her to take her time making the next decisions. Bob Bob

No one here is disrespecting the other site or DJ. There will be people that come here and get discouraged. I've been on ch.com since day one. I knew DJ before there WAS a ch.com Its been around what, over 10 years, 12? There have been hundreds of people that came away discouraged. That doesn't change the thousands that have been ENcouraged. One thing I don't want to happen here is that people be told or feel they need to be tough skinned. When people come here they have been beat up enough and don't need another brow beating. If someone feels discouraged by someone over at ch.com, or by their doctor, or discouraged by another failed med, or discouraged by a slow 02 delivery man, I hope they come here and tell us about it and get some support. I'm sure DJ feels the same about people going to his site. if someone feels discouraged here, I hope they go to ch.com and get some support. I'm glad people have choices and don't have to go home alone to deal with a life of cluster headaches. I didn't read anything on the thread here or at ch.com that was at all divisive or disrespectful of the sites or DJ or cluster sufferers. For those that have been around for a long time, just think how that ch.com thread would have developed and ended before DJ set down the new rules. I've seen nothing but a good healthy discussion of some very important topics and diverse points of view. Bob I propose and challenge ch.com to a three event Message Board Olympics at next year's Clusterbuster conference in Chicago. Tug-O-War, fishing derby and scrabble match. That's the only type of competition I expect between us.

Although it isn't well known, nausea is a cluster symptom in about 10% of people with clusters. Although it could be the meds, it could just be the clusters. Stadol can certainly make you queezy. Bob

Welcome m9ndbent, I'd obviously vote for Floyd but you need to be careful. If you listen to; On The Turning Away, you'll end up writing a check to a homeless shelter the next day and if you listen to The Wall, you'll pull your kids out of school ;D. Bobw

I was pulling for Casey and would have been happy to see Westwood do it. But it was good to have the Oooosterizer hang in there. We do have some golfers that attend the conferences. There's a rumor that an annual beating happens to one member. Maybe we can plan for people that want to attend a golf tourney to show up a day early for next years conference. Not a bad idea about the sponsorships. If people attending this year want to get out and play, I KNOW there are some astounding courses in Portland along the Columbia river. I lost some balls there once ;-) Bob

Any neurologist that doesn't know that 02 is the first line of defense for cluster headaches might also be interested to learn of the new discoveries of cell phones, the internet and unleaded gas. Just as with any disease, there are wide ranges of severity. Some people do have ood success with prescription meds. Some have good success with lithium and others might find relief with verapamil. With many, a combination of some sort works. Success means different things to different people though. Some are able to eliminate or greatly curb the effects of their cycles while others may see a 40% decrease in effects as success. Nothing that comes with FDA approval will stop a cycle. Prednisone can stop attacks while you're on it but the attacks will return as the dose drops or ends. If you have short cycles it can get you through until the cycle ends but long term use can be hazardous to say the least. Many people on this site are here in search of something that can end a cycle early or stop the next one from beginning. Mostly because they are, let's say, less than happy with the results that prescription meds have afforded them over the years. Bobw

Each year at our conferences, we hold an auction to raise funds. Over the years we've been able to raise quite a bit and those funds have allowed us to not only continue to offer great speakers and programs at the conference, but have helped fund our research expenses. We'll be doing this again this year so whether you can be there or not, you have an opportunity to participate. If you're planning on being there and would like to bring something along to donate, it's very much appreciated. if you'd rather ship it ahead of time, you can do that. For those that can't make it but would like to donate an item, please send it to: Clusterbusters C/O: Chris Runyard 3942 SE Salmon St. Portland, OR 97214 Chris would appreciate it of items are sent to arrive AFTER August 1st. We've had a wide range of items donated in the past. Everything from bottles of wine to handmade craft items. Oil paintings to Oxygen masks. Books autographed by the authors and sports memorabilia. Thanks to all the people that have not only donated items in the past but those that have purchased them. Any questions, just post here or drop me a PM. Bob P. S. in addition, for those that may have missed this on the conference page, we do offer advertising in the conference syllabus. For details on this, contact Fun Guy here. P.P.S. If you need a tax deduction, it's one way to get the government to help fund our cause. (shhhhhh) ;-)

5 months on 85mgs of Prednisone? Wow, did you have to stock a 2nd refrigerator? If you tried dosing while on the prednisone, that would have blocked everything for sure. its the same with the triptans like zomig. I hope we can help. Welcome aboard, Bobw

Hi Darrell, The 22nd is Sunday night so the price holds for you if you want to leave Monday....so I'm a liitle confused. Did you want to stay Monday night also? Let me know and we'll check out whatever you need. Bob Hoping to see you there

It's not always easy being the messenger. Especially when the message can be bad news. When people say (and mean for the most part) that they'll do anything to get rid of the pain, side effects don't always matter. People don't like to hear that 9 people died from Imitrex the first year it was on the market. There is now plenty of evidence about the adverse side effects of the meds we use to treat clusters. Even Goadsby has admitted that all the prescription meds can make things worse in the long run. This includes Verapamil. The truth is not guaranteed to elicit positive responses and a thank you. It's a complicated issue and all you can do is offer your honest thoughts, do your best to differentiate between facts and opinions, and understand that people will react based upon their history, not yours. Bob

Yes and the best part is that although we could easily get along on our good looks alone, we also have the brains to go along with it. Not to mention our modesty ;-) Bob