mrweekend

I missed one of the speakers on the syllabus. Sorry about that, Hipshot! •Dan Ervin Dan is a 56 year old man who has experienced chronic cluster headaches since the onset of the disorder eleven years ago. He has tried most every medication available and every surgical procedure short of deep brain stimulation. Known as “Hollywood” among the cluster headache community, Dan volunteered to host a National Geographic film crew from London to document his use of mushrooms to successfully treat cluster headaches.

I've added another address to send items. Don and/or Kathleen Mooradian, 1846 Primrose Ave, Nashville, TN 37212 Thank you Don and Kathleen. Please mark the outside of the box with a CH so they dont have to be opened and are easily identified.

Hello everyone. The convention is a month away and we are in need of donations for our raffle and auctions. If you would like to donate please send the items to: Denise Loveland- Bowe 277 Fergus Rd LaVergne TN 37086 We will get them to the hotel on the 18th. I believe we may be getting another address to send them to in the near future. Thank you all for helping to support clusterbusters! Lee

Still unavailable... 12:30pm est today.

This is really interesting. I like the part about all effects completely gone after two hours. Hopefully a large scale trial can be looked at, even if it's just a patient group run exercise. Great job, Lt.2

The Clusterbusters, Inc. 9th Annual Cluster Headache Conference is only 48 days away. This year's lineup of speakers will educate, entice and hopefully entertain all that attend. Here is a list of the speakers and a small background on most of them. We are waiting on some info on a few and I will post them when they come in. If you have never attended one of these conferences, I urge you to consider coming to Nashville this Sept 18-21. The speakers are wonderful, and it will likely be the largest collection of clusterheads ever assembled. My first convention was a life changing event. You will not want to miss this convention! The links to register and make hotel reservations are below. http://events.r20.constantcontact.com/register/event?oeidk=a07e8pr6aa003823ed7&llr=asfwt7iab Bob Wold - Bob 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. Recently, along with Dr. Larry Shcor and Dr. Robert Shapiro, Bob helped develop the "Cluster Headache Fact Sheet" for use by the National Suicide Prevention Lifeline 1-800-273-TALK. The sheet can be downloaded from this page: http://www.crisiscentersblog.com/?p=2382. Bob will present a brief history of Clusterbusters, review the last year, and address plans for the coming year. Lee Markins - Lee has experienced cluster headache for most of his life, having gone from chronic for 19 years to episodic for 28 years and now back to chronic. A strong advocate for CH, he has attended the last three Headache on the Hill meetings in Washington DC. This is his second year as Chair Person for the Clusterbusters Annual Headache Conferences. Brian E. McGeeney, M.D. , MPH - Dr. Brian E. McGeeney, is a neurologist at Boston Medical Center and full time faculty (Assistant Professor of Neurology) at Boston University School of Medicine. Dr McGeeney is a Diplomat of the American Board of Psychiatry and Neurology, with the added qualification in Pain Medicine. Dr McGeeney is also boarded by the American Board of Pain Medicine and holds the United Council on Neurologic Subspecialties board in Headache Medicine. Dr. McGeeney will explore some historical aspects of this disorder, some important people in the initial description and treatment and how to make a good diagnosis. The discussion will also review some related disorders that can mimic cluster headache. The treatment of cluster headache will feature prominently in the presentation. Dr. McGeeney will be the keynote speaker. Larry Schor, Ph.D. - Dr. Schor is a Professor of Psychology at the University of West Georgia and a licensed psychotherapist, who will focus on the psychological aspects of CH. He is a Licensed Professional Counselor and Certified Professional Counselor Supervisor in Georgia. His research, teaching, and practice focus on the psychological effects and treatment of trauma. He is particularly interested in states of consciousness associated with trauma and pain; especially alterations in consciousness associated with cluster headaches. Mr. Bill Mingus - Bill is a long time veteran of cluster headache. He has been active in the online community and was a member of OUCH USA for many years. Considered by many as an expert on the use of oxygen in the management of cluster headache, Bill will share his knowledge during a breakout session "Oxygen - Making It Work For You. A Hands On Demonstration and Discussion". This will be an opportunity to learn more about oxygen use including tips and tricks to optimize its effectiveness. Lisa Hertz - Lisa is an English Teacher and marathon swimmer from St. Petersburg, FL. She was diagnosed with chronic cluster headaches in 2006, and started seeking alternative treatment methods in the summer of 2007 after being hospitalized with cluster headaches and serious asthma complications. Last year, Lisa won a 12 mile marathon swim race around Charleston, SC and was only one of five swimmers to make it across rough conditions of the 24 Mile Tampa Bay Swim. In Lisa’s presentation, she will discuss overcoming multiple health issues and the importance of a positive mindset. Emmanuelle Schindler, M.D., Ph.D. - Dr. Schindler is a Neurologist at Yale School of Medicine. She received a B.S. in Biological Psychology at the College of William & Mary in 2003 graduating Summa cum laude. She received her MD and PHD in Neuroscience from Drexel University College of Medicine. She has won several awards and honors including the American Academy of Neurology Award, Excellence in Neurology-May 2012. She has numerous publications. Dr. Schindler will be presenting the results of Clusterbusters Medication Use Survey. James Fadiman, Ph.D. - Dr. Fadiman did his undergraduate work at Harvard and his graduate work at Stanford, doing research with the Harvard Group, the West Coast Research group in Menlo Park, and Ken Kesey. A former president of the Institute of Noetic Sciences and a professor of psychology, he teaches at the Institute of Transpersonal Psychology, which he helped found in 1975. An international conference presenter, workshop leader, management consultant, and author of several books, he lives in Menlo Park, California, with his filmmaker wife Dorothy. Dr. Fadiman will present on the safety and setting of using alternative treatments for cluster headaches. Alexis Williams - Alexis will present a discussion for family members and friends who support cluster headache patients. As support is one of if not the most important part of living with cluster headaches, it’s as important for us to listen to their concerns and understand their part in a family with clusters, as it is for sufferers to be understood. We are all in this together and the emotional strain and pain we all deal with needs to be explored and understood. Advocacy Panel - An update on CBs advocacy efforts including a report on this year’s Headache on the Hill. The Clusterbusters advocacy team will address updates on our efforts and the progress we've made and discuss the coming year's events. An interactive session looking at our work on Capitol Hill, Television, Radio and print as well as our presence on the internet. Anjan Chatterjee, M.D., MPH, MBA -Dr. Chatterjee is board certified in Neurology and Psychiatry. Dr. Chatterjee has more than two decades of direct patient care experience, treating patients with a wide variety of neurological and psychiatric disorders. Over the last decade, Dr. Chatterjee has worked at Merck Research Labs and Pfizer to develop neuroscience medicines. Recently, Dr. Chatterjee founded VR1 Inc. VR1 focuses on providing treatments to address acute pain associated with migraine and other severe headache conditions, including Ausanil®– a non-prescription, homeopathic nasal spray for severe headaches and migraines. There will be two medical device company presentations. I am not sure who will be speaking. ElectroCore, LLC - ElectroCore is a US based electroceutical healthcare company, which is developing a range of non-invasive Vagus Nerve Stimulation (nVNS) patient administered therapies for the treatment of multiple conditions in neurology, psychiatry, gastroenterology and other fields. Initial focus is on primary headache (migraine and cluster headache), with trials continuing in epilepsy, gastric motility disorders, and depression and anxiety. Autonomic Technologies Inc - is a medical device company focused on the development and commercialization of innovative therapies for the treatment of severe headache. The company’s initial product, the ATI Neurostimulation System, is approved in Europe for the treatment of cluster headache and is currently being investigated in a multi-center, randomized study for the treatment of high frequency, high disability migraine. Questions? info@clusterbusters.com

The Clusterbusters, Inc. 9th Annual Cluster Headache Conference is only 48 days away. This year's lineup of speakers will educate, entice and hopefully entertain all that attend. Here is a list of the speakers and a small background on most of them. We are waiting on some info on a few and I will post them when they come in. If you have never attended one of these conferences, I urge you to consider coming to Nashville this Sept 18-21. The speakers are wonderful, and it will likely be the largest collection of clusterheads ever assembled. My first convention was a life changing event. You will not want to miss this convention! The links to register and make hotel reservations are below. http://events.r20.constantcontact.com/register/event?oeidk=a07e8pr6aa003823ed7&llr=asfwt7iab Bob Wold- Bob 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. Recently, along with Dr. Larry Shcor and Dr. Robert Shapiro, Bob helped develop the "Cluster Headache Fact Sheet" for use by the National Suicide Prevention Lifeline 1-800-273-TALK. The sheet can be downloaded from this page: http://www.crisiscentersblog.com/?p=2382. Bob will present a brief history of Clusterbusters, review the last year, and address plans for the coming year. Lee Markins- Lee has experienced cluster headache for most of his life, having gone from chronic for 19 years to episodic for 28 years and now back to chronic. A strong advocate for CH, he has attended the last three Headache on the Hill meetings in Washington DC. This is his second year as Chair Person for the Clusterbusters Annual Headache Conferences. Brian E. McGeeney, M.D. , MPH- Dr. Brian E. McGeeney, is a neurologist at Boston Medical Center and full time faculty (Assistant Professor of Neurology) at Boston University School of Medicine. Dr McGeeney is a Diplomat of the American Board of Psychiatry and Neurology, with the added qualification in Pain Medicine. Dr McGeeney is also boarded by the American Board of Pain Medicine and holds the United Council on Neurologic Subspecialties board in Headache Medicine. Dr. McGeeney will explore some historical aspects of this disorder, some important people in the initial description and treatment and how to make a good diagnosis. The discussion will also review some related disorders that can mimic cluster headache. The treatment of cluster headache will feature prominently in the presentation. Dr. McGeeney will be the keynote speaker. Larry Schor, Ph.D.- Dr. Schor is a Professor of Psychology at the University of West Georgia and a licensed psychotherapist, who will focus on the psychological aspects of CH. He is a Licensed Professional Counselor and Certified Professional Counselor Supervisor in Georgia. His research, teaching, and practice focus on the psychological effects and treatment of trauma. He is particularly interested in states of consciousness associated with trauma and pain; especially alterations in consciousness associated with cluster headaches. Mr. Bill Mingus-Bill is a long time veteran of cluster headache. He has been active in the online community and was a member of OUCH USA for many years. Considered by many as an expert on the use of oxygen in the management of cluster headache, Bill will share his knowledge during a breakout session "Oxygen - Making It Work For You. A Hands On Demonstration and Discussion". This will be an opportunity to learn more about oxygen use including tips and tricks to optimize its effectiveness. Lisa Hertz- Lisa is an English Teacher and marathon swimmer from St. Petersburg, FL. She was diagnosed with chronic cluster headaches in 2006, and started seeking alternative treatment methods in the summer of 2007 after being hospitalized with cluster headaches and serious asthma complications. Last year, Lisa won a 12 mile marathon swim race around Charleston, SC and was only one of five swimmers to make it across rough conditions of the 24 Mile Tampa Bay Swim. In Lisa’s presentation, she will discuss overcoming multiple health issues and the importance of a positive mindset. Emmanuelle Schindler, M.D., Ph.D.- Dr. Schindler is a Neurologist at Yale School of Medicine. She received a B.S. in Biological Psychology at the College of William & Mary in 2003 graduating Summa cum laude. She received her MD and PHD in Neuroscience from Drexel University College of Medicine. She has won several awards and honors including the American Academy of Neurology Award, Excellence in Neurology-May 2012. She has numerous publications. Dr. Schindler will be presenting the results of Clusterbusters Medication Use Survey. James Fadiman, Ph.D.- Dr. Fadiman did his undergraduate work at Harvard and his graduate work at Stanford, doing research with the Harvard Group, the West Coast Research group in Menlo Park, and Ken Kesey. A former president of the Institute of Noetic Sciences and a professor of psychology, he teaches at the Institute of Transpersonal Psychology, which he helped found in 1975. An international conference presenter, workshop leader, management consultant, and author of several books, he lives in Menlo Park, California, with his filmmaker wife Dorothy. Dr. Fadiman will present on the safety and setting of using alternative treatments for cluster headaches. Anjan Chatterjee, M.D., MPH, MBA-Dr. Chatterjee is board certified in Neurology and Psychiatry. Dr. Chatterjee has more than two decades of direct patient care experience, treating patients with a wide variety of neurological and psychiatric disorders. Over the last decade, Dr. Chatterjee has worked at Merck Research Labs and Pfizer to develop neuroscience medicines. Recently, Dr. Chatterjee founded VR1 Inc. VR1 focuses on providing treatments to address acute pain associated with migraine and other severe headache conditions, including Ausanil®– a non-prescription, homeopathic nasal spray for severe headaches and migraines. There will be two medical device company presentations. I am not sure who will be speaking. electroCore, LLC- electroCore is a US based electroceutical healthcare company, which is developing a range of non-invasive Vagus Nerve Stimulation (nVNS) patient administered therapies for the treatment of multiple conditions in neurology, psychiatry, gastroenterology and other fields. Initial focus is on primary headache (migraine and cluster headache), with trials continuing in epilepsy, gastric motility disorders, and depression and anxiety. Autonomic Technologies Inc.-is a medical device company focused on the development and commercialization of innovative therapies for the treatment of severe headache. The company’s initial product, the ATI Neurostimulation System, is approved in Europe for the treatment of cluster headache and is currently being investigated in a multi-center, randomized study for the treatment of high frequency, high disability migraine. Advocacy Panel- An update on CBs advocacy efforts including a report on this year’s Headache on the Hill. The Clusterbusters advocacy team will address updates on our efforts and the progress we've made and discuss the coming year's events. An interactive session looking at our work on Capitol Hill, Television, Radio and print as well as our presence on the internet. Alexis Williams will present a discussion on family members and friends who support cluster headache patients.

WTG Dick! Looking forward to seeing you and Bettye again!

Thanks for the info. They will be sadly missed. RIP Jaques and Heather. I hate this disease! Please ask for help when you need it.

I am friends with Jason and Lisa. He has SUNCT and they are wonderful people!

Mollie did all the work. I hope it helps to raise some awareness. She hopes to get a bunch of personal interviews in Nashville this Sept. and should then have enough footage to begin editing the Clusterbuster Convention documentary. I'm so proud of her. Looking forward to seeing you all in DC. Lee

Very nice Vicky!

Thanks BG. It was great to finally meet you in person. These conferences get better every yea.r We look good!

I am going to try to make it by there tomorrow, as long as my head cooperates. If there is anything you would like to say, you can type it here and I will be happy to print it out and hand it to Nikki.

I am so sad to hear this news. Andrew will be missed. lee

I really believe we made some progress this year! Please contact your Congressmen and ask them to support our asks and send the language we presented, as they make their decisions this week. Thanks, Lee

My first remembered attack was around age 5 . Mom believes I was attacked as an infant. Chronic until about age 19, episodic till around 51, chronic again.

Hi Yammy, I understand your frustration with Doctors. If you can find a welding supply company you canget you O2 without a perscription, and it's cheaper than from a med supply company. Hope you get some relief soon. Lee

Happy Birthday Dan!

Im number 34 far right. My lovely Mj- 10 far left. Mollie and Steph are 28. We had a great time! Thank you for everything. Lee

Brew and I had quite a battle for that quilt! End the end, he won. Congrats.

I was a PADI instructor for many years. Diving really had no effect either way when I descended. I have been hit while submerged and interestingly enough I continued the dive. Banged my head against coral though.... I find my attacks come on stronger once I have ascended to the surface.

Can I borrow ten bucks?...lmao bb hehe

Any idea how much money the raffle and auction brought in?

The first thing mrsweekend did after we got home was label a spare change jar "Chicago Clusterbuster Convention 2013". We already have $10 saved! It was an awesome time and next year I hope we have 200 people!