FunGuy

Perhaps once or twice a year, somewhere on our planet, there is a room filled mostly with Cluster Headache sufferers, along with a few loved ones and medical professionals. In that room, there exists a rare opportunity to better understand ourselves, each other, and our condition. Such an opportunity will be possible at the ClusterBusters conference beginning September 16, 2011 in Chicago Illinois, led by a fellow clusterhead and licensed psychotherapist, Dr. Larry Schor. Dr. Schor describes the sessions as this: There are a number of common factors that are hard, if not impossible to explain to others. My sense is that nearly everyone with this condition has been psychotic. Apparently it is quite common during an attack to feel compulsions like, “Maybe if I get the pliers and pull some of these molars it would help” or “If I drill a small hole in my head it might relieve the pressure” There also seems to be a pretty universal experience of assault by some otherly beast. The attached picture seems to capture this for many of us. Suicidal thoughts, attempts, and completions are alarmingly high among CH sufferers. For many, it also seems that the suicidal ideation is not even so much about stopping the pain, but more as a way of killing “It” even if it means I will die in the process. There is a fear that this might sound like melodramatic hyperbole to outsiders. The existential therapist, Irvin Yalom identifies the therapeutic factors of group work (see link below). I believe these principles offer particular relevance for our group. On the Saturday afternoon of the Conference, Dr. Schor will facilitate two group sessions. Our first group meeting will focus on the theme of what we have in common that makes us an “us.”  What this means is that we clusterheads have all or mostly felt psychotic helpless, been misunderstood by people who suggested unhelpful things, been traumatized by the assault of a cluster attack, contemplated suicide, felt the need to hide for various reasons, etc. There appears to exist a PTSD-like quality among some. The individual and cumulative effects of enduring attacks alter aspects of our lives. Our second group meeting will explore “what helps.” Recognizing that no singular treatment works for everyone, we will share our successes and failures; medically, emotionally, and relationally as we collaboratively approach some of the difficult choices required to navigate through this condition. Registration details will be available shortly. Mark this conference date on your calendars, you’re not going to want to miss this. Link: Therapeutic Factors in Group Work: adapted from (Yalom and Leszcz, 2005) http://www.agpa.org/guidelines/factorsandmechanisms.html

Greetings all: I'm going to start a thread for conference updates. As already announced, the conference will be in Chicago on the weekend of September 16. It will be in the Rosemont area, near O'Hare, the hotel should be finalized shortly. We are working on several things to make this the best conference yet. Transportation, dinners, etc....... stay tuned. We will be adding details as they become available. Please, ask any questions and post any ideas. FG PS: First announcement in follows!!

Just to clarify, Entheogen is a corporation set up by a group including Dr. John Halpern, Dr. Torsten Passie and Ari Mello. This is not a big Pharma company, it's a group of people trying to get BOL through trials and into production. All three of these have been at the ClusterBuster conferences over the years. BobW is one the Directors of Entheogen Corp and Marsha (a CB Director) is one of the Entheogen Directors. It's all there on the web site, work in progress for BOL. FG PS: Fuzzy warm pictures, lol :-)

Sam: you'll get through today, tomorrow and the rest of them. Keep learning, lots of good advice so far in this thread. Not trying to hijack this thread, but wanted to ask Bejeeber. I've not had meditation trigger a CH, but most of my CH occur during the night. I only get a few evening attacks (after meals), so I meditate earlier then when in cycle. However, naps are a sure trigger for me, regardless of the time. But I gotta say, meditating while 'treating' can be a wonderful experience. :-) FG

The problem appears to be fixed now. Thanks to our host DJ. Without him, this boards would not exists like it does. Thanks DJ Have a happy holiday season and best wishes to you and your family. FG

We seem to be having a problem, no one can attach a file, including me. Sorry about that. We are working on it. I can play within the forum settings and force it to work, but that presents some new problems. If anyone has something they need attached now (like right now), please PM me the attachment and I will put it in your thread. I'll delete this thread when the problem is fixed. :-) FG

Please. Lets play nice. FG

Sorry Jill. I meant the O2 will help with the CH while you are dealing with the depression. FG

I've had several emails about this, thank you all for offering to help out. CHFather was first to contact me with his offer and I know he'll do a great job. You folks are all so wonderful and helpful. We could not to do all this without all of you helping out, whether in tasks like this or your daily posts that support and encourage everyone else. To all of you, thank you. FG

Jill: here is a link to some of the side effects of verapamil: http://www.drugs.com/sfx/verapamil-side-effects.html I don't want to alarm you, but you should know this stuff. Please consult your Doc if you have further reactions or symptoms. OK? :-) In your first post you mentioned depression, now the blues and anxiety on top of that. CH may be "your biggest problem" as you said, but depression may need to be treated also. The oxygen will hopefully help you greatly and provide some relief if you do need to treat the depression. Please do take care of the depression if you need to, do not ignore it. Best wishes FG

2 links attached: Nerve stimulation may ease chronic cluster headaches Occipital nerve stimulation long term follow up Thanks to BobB for sending these. FG Nerve_Stimulation_May_Ease_Chronic_Cluster_Headaches.htm Treatment_of_medically_intractable_cluster_headache_by_occipital_nerve_stimulation_long-term_follow-up_of_eight_patients.htm

Bob: If you want to send it to me also, I'll upload. Administration has its privileges. :-) FG

I need a favor. The web site clusterbusters.com link section has not been completed. The links from the old site need to be copied to a new page, edited and verified they are still live. More links need to be added. (later I'll make a post on this board asking for more links, for now I want to get something up. Web site skills are not necessary for this task, it's mainly cut and paste stuff. This is one of those jobs best done by one person, it will take several hours but can be done over many days. If you have some time available and want to help out, please send me a PM or email. Thanks FG

Yep, lets get on with kicking some CH ass. There is obviously a lot more to this story, various opinions and personal agendas. The moderator of the the Dose Nation site made a statement that has since limited discussion: "We are no longer accepting anonymous comments on this post. If you have something to say about this issue, it must be on the record as an actual person. Thank you. If you use a pseudonym or are not logged in as an identified user, your comment will be deleted." Basically, man up or stop with the anonymous posts. Little has been said since. As is often the case, I believe the truth is somewhere in between the stories presented, most of which have been deleted in that article. That says a lot to me, you can make your own decision. Bottom line, Dr. Halpern is in my opinion working hard to help those with cluster headache. I don't care what has happened. OK, I do care. But I care a lot more about each and everyone of us with CH. And more than anything I want the pain of these headaches to end. That is the truth that is most important to me. Let me say this, I have the utmost respect for Dr. Halpen, Dr. Sewell, Rick Doblin and many others. I've met these people, they have given me their time, their opinion and their expertize. I trust them implicitly with my health and my sanity. Each of them. All of them. D~

There has recently been a paper published on oxygen: Inhaled Oxygen and Cluster Headache Sufferers in the United States: Use, Efficacy and Economics: Results from the United States Cluster Headache Survey. Authors Dr. Todd Rozen and Royce Fishman This will be published in Headache shortly, here is a link to the online version. http://www.docstoc.com/docs/62904898/US-Cluster-Headache-Oxygen-Survey-Early-View-Online-Publication-HEADACHE Thanks to Royce Fishman for sending me the link. FG

Bump away!! I've tried to direct people to the files, I get emails and PM's after they register. Any suggestions of how to improve the ease to find them would be appreciated. FG

Please,only one message thread allowed for each cure. :-) FG

Ryan: By registering (and it being approved) you are now a member. If you can post, you're in. :-) FG

Greetings all: We've put together a short survey on cluster headache conferences. Whether you've been to any conference or not, your thoughts and opinions would be greatly appreciated and will help with future planning. Tell us what you think. The survey will take about 5 minutes. All answers are confidential and you are not required to identify yourself. So please, take a few minutes and complete the survey. I'll leave the survey open until sometime in last October then have the results compiled. This link will take you directly to the survey: http://www.eSurveysPro.com/Survey.aspx?id=22e804e0-4b8c-4fd8-a111-beb604a2c83f Thanks from ClusterBusters. PS: This link is also posted on other message boards, so please answer only once.Â

There is a new mask: http://www.clusterheadaches.com/khxc/ from personal use, it is amazing. IMO if you are using oxygen you must try this. Look on the ch.com page for detailed information on O2. The non-rebreather masks from any supplier have a bag, think of it as a reservoir. Say you've go your flow rate at 15lpm, that is what is coming down the tube so that is all the O2 you can get. The bag gives you more as while you are exhaling the bag is filling. The standard O2 masks have ports or openings on the sides, usually one is closed off with a plastic flapper valve but the other is open. Duct tape fixed that, so you are inhaling only 100% O2. I think we all have stories about well-,meaning people becoming alarmed when they see us puffing away on oxygen. After all, it's only used when someone is having a heart attack. I try and smile while I tell them to leave me alone. ;-) Dg

Good day all: I've not tried truffles yet, they sound promising though. I look forward to more discussion on this topic.  I know BigDose has a lot of experience overall in this treatment of CH, far more than I. This thread aside, I'd like to urge some caution on the use of paper, other compounds and dosing frequency, especially for the newbies to this treatment. As Big Dose said, be your own judge as to the size and timing of your dosing. I want to highlight that. While 15 tabs has not had an effect for BigDose, that is highly unusual and not the norm. I have no doubt this is what he experienced but please don't anyone else try that much at one time without some caution.  :-) As always, the treatment schedule, frequency of treatment and amount needs to be tailored for each individual. In the files section are the recommendations that have been developed after reviewing many many reports from people with CH. We recommend you start there and then adapt as necessary. It is imperative that your personal dose and schedule based on your tolerances and experience. Please, do not make a decision based on the experience of others. Your results will vary. My personal experience with seeds (posted elsewhere) and altering the treatment schedule was ineffective due and IMO prolonged my cycle because I messed with the schedule. Carry on.  :-) FG

Smokey: I wish you luck with the TMJ stuff, it can be a nasty condition and seems it can irritate both migraines and clusters. Sounds like you're in remission from the CH and the migraines are under control, overall going from 3-4 attacks per week with a constant background headache (from your first post) to none now. Excellent! Along the way you've become OK with where you are now and where you are going. That is great.  We're here if the headaches return. Thank you for your thoughts and comments in your last post, FG PS: Also, good for you on stopping the pot. Edits because I can't spell.

This is a great article and a great thread. But I gotta point out the distinction between primary and secondary headaches. A Primary headache is a headache that is not caused by another disease or medical condition. This includes include migraine, tension, and cluster headaches. It does not mean there is not a cause for a primary headache, only that a primary headache is not caused by another condition More info here: http://headaches.about.com/od/diagnosingheadaches/tp/PrimaryHA.htm "Primary headaches are those that exist independent from any other medical condition. This is in contrast to secondary headaches that are a result of an underlying medical issue or condition." FG

Eddie, I know I didn't give you much time to prepare but you were amazing. Thank you. Both you and Dave & Lee Ann were. Dan, I meant Dan. lmao, please Lee Ann, let me get past the Dave/Dan stuff.  FG

Hi all: I made it back home late Sunday to no internet and a crazy week at work. I'm just getting caught up now. First, as it's been mentioned several times before, if you've not been to one of these conferences you cannot imagine how wonderful it is to experience one. So many new friends, good information and incredible conversations (and stories!) long into the night. So if you've been hesitant about coming, don't give it a second thought. PM one of those that was in Portland for the first time, they will reassure you just how great a time these conferences are. During one of my parts speaking I said I always learn more at the conferences than I ever give or share during my presentation. This was so true this year, thank you all for bringing your stories, ideas and thoughts. Chicago in 2011, be there!! I'd like to thank a few people for making Portland 2010 a success. Firstly, 2 local people, Cindy for arranging the oxygen at the conference and Chris for helping out in so many ways, thank you both. It was great to meet you. Joseph, you were such a big help. Folks, this pleasant young man offered to help us during the conference and flew himself in from Georgia to do so. He handled the registration and many other things in the days preceding the conference. People like this are special in so many ways. To a Doc that was attending the conference, thank you for all your input, comment and questions. You are truly a caring person, that is evident. I know you've gone home with some new ideas and a revised outlook on clusters. I'm certain your patients will benefit from your coming to Portland. One of the high spots for me was Dr. Dale Carter from Portland, she related to the audience so well and was so very knowledgeable of CH.  Her ideas around conditions mimicking CH was relevant and something to keep in mind. Thank you for giving us your time, I trust you enjoyed coming as much as we did hearing you speak. There is little I can say about Dr. Halpern, he is such a good friend to ClusterBusters and we all appreciate him being here again this year. Thanks also to Jack Sandweis for his time and thought provoking presentation Denny did a great job filling in to the spot that became available at short notice. Thanks buddy. Bob, my friend and mentor, ya know I love ya. Thanks for bringing me into this group and for all you do for all of us. But the highlight goes to 3 people, Lee Ann & Dan, and Eddie. I've never heard such wonderful talks, it was moving beyond word as they shared the story of their clusters and treatments. Wow, just wow. All 3 of you damn near had me in tears. <big hug> Thank you all for coming to Portland. Can't wait to see everyone next year in Chicago. D ... aka FunGuy PS: SherriLynn, you thought I forgot you. Didn't ya. :-) This lady organizes the hotels, the food, the rooms and everything else. She truly does it all and there is a lot that goes on being behind the scenes and out of view to put these conferences together. Thank you SL, again this year the conference was a success due to your efforts.