Hi I'm James from the UK and find that the advice and friendly nature of the group a great comfort in us sufferers of the dreaded CH, lots of good ideas which are available for sharing
We have a similar site in the UK and they are a registered charity and survive on membership fees and donations, they also have a phone in line for your low times and they have unpaid advisors who are sufferers themselves ready to give you support in your darkest hour.
James
Cluster Busters is a great source of information on an emerging line of medicine that could greatly improve (or even save) the lives of millions of Cluster Headache sufferers (like me).
I have received information from the Cluster Buster's website, and from their staff. They are very professional and trying hard to raise awareness and get more scientific understanding of this issue and the emerging treatments. That is very important work, and they are doing it well.
Headache on the Hill #HOH2014
by Natalie Hart 3/3/14
My son, Austin Jamerson and I went to DC, Capitol Hill, Tues. Feb 11, 2014
Supporting ClusterBusters (ClusterBusters saved my sons life)
The day before, in our conference room at the hotel. All of the individual headache groups formed one big group named, 'Alliance for Headache Disorders Advocacy'. In the room there were doctors, nurses, sufferers of Clusters and Migraines etc. We were briefly updated and discussed the do's and don'ts and got our plan of action prepared for the following day. At the end of the meeting, we were asked to get in line alphabetically in our states order.
I was so relieved to have 4 more people from my state of California join my son and I. We all got our agenda list for the following day of meetings that were prearranged. Wow! That must have been so much work. I was impressed how organized our daily appointments were for the following day. This was my first year attending HOH and I still was not very confident of how tomorrow will unfold. I was excited and nervous, I don't think I slept a wink. We all met in the lobby of the hotel at 7am. Then we all met up at Capitol Hill at 8am for the group photo.
All 6 of us from California formed our group
Robert Cowan, MD
Clinical Professor, Neurology and Neurological Sciences
Stanford University
Alan M Rapoport, MD
Clinical Professor of Neurology
The David Geffen School of Medicine
University of California, Los Angeles
President, International Headache Society
Eileen Jones R.N.
Oakland, CA
Retired RN, volunteer for the Red Cross when she's healthy enough and chronic Migraine sufferer with a device implant for her pain. Eileen is founder of Miles for Migraines and has raised $35,000. This was her 7th trip to HOH. What a strong woman!
Rachael Jablo
San Francisco, CA
Young woman who suffers migraines and is a landscape photographer. She published a book and gave every office a complimentary copy.
Austin Jamerson
Arroyo Grande, Ca
CLUSTERBusters
Age 20, college student, cluster headache and migraine sufferer
Natalie Hart
Arroyo Grande, CA
Clusterbusters
Austin Jamerson's mom, supporter, salon and day spa owner.
All together headed to our meetings
9am Barbara Lee
10am Nancy Pelosi
11:30 Dianne Feinstein
12:15 Henry Waxman
2:15 Anna Eshoo
2 offices we didn't have meetings, we dropped of our packet of valuable information to
Julia Brownly and Lois Capps' offices.
All of our meetings went about the same. We all sat down with the congressman.
First off, the patients shared stories and experiences. Eileen and Rachael shared their personal story then Austin, my son, explained how he suffers from the worst pain to medical science, Cluster Headaches and he is suicidal. His mom can't work, and oxygen helps him, etc. It was heart wrenching. I believe they did have compassion and concern for us.
Most of the congressman shared with us their own personal stories of their headaches or a loved ones or someone they knew that suffers.
Now, it's time for the doctors to talk business....
Ask #1
Dr.Cowan said, we are not asking for money. (Big smiles!)
We are requesting at least 3 neurologists who specialize in headaches to be on the NIH panel. (National Institute of Health). He explained, today's neurologist are not going into the headache field. There is no support or research, it's just not promising.
Nearly 200 neurologists are on the panel, not one specializes in headaches. When they are passing out funds, no one is there to say, 'over here'. We need research.
Ask #2
Dr.Rapoport would explain the only drug out there is called Sumatriptian (Imetrex) it costs $100 a dose, Austin for example needs 90 doses a month. Medicaid will only pay for 2 per month. Austin's uses Oxygen Therapy, it's $10 or $15 a tank, far more cheaper. But we don't know why it helps sufferers, we need research.
That day was exhausting, especially for Austin, he was the youngest person there, that day was very emotional for him, he did so good, I'm so proud of him.
He said, 'mom, I'm so tired, I want to go down there and tell all those men how strong they are and thank them for being so strong'.
After dinner he was in bed sound asleep. Until John Bebee woke him up. (I wasn't waking him up, I'm the mom, I would've gotten yelled at) John told Austin that Bob Wold wanted to talk with him. Austin and I were leaving in the morning and now is the only chance for them to talk. Austin woke up, got dressed and had a private conversation with Bob. So encouraging, so supportive, words cannot explain the bond, the connection, the care, concern, the tools and confidence Bob gave Austin.
All the CH people Austin bonded with, Austin truly loves you and thinks you're all so extremely strong and are all his heroes.
From the bottom of my heart, thank you all for giving him the strength to live.
Austin walked away from DC with new family.
Doctors who we shared the day with, walking one on one with him all over Capitol Hill from building to building, tell Austin to call anytime he needs them. Incredible experience. Priceless!
Thank you #HOH2014
Clusterbusters has, I believe, literally been a life saver for me. The information I got from this organisation was invaluable, and I can not adequately explain how extraordinary it was to know that there was something I could do help with my cluster headaches, and that there was a light at the end of the tunnel.
The best thing I have ever done for myself, was clicking the link to Clusterbusters, after I had Google searched "worst headache ever" Because of the information that was provided, I was able to track my symptoms and get a quick diagnosis from my neurologist. The website and organization has been more helpful and a better resource than my physicians. I owe my life to this organization, the people that founded it, and the community that is currently part of it. I do not have enough good things to say about Clusterbusters Inc.
ClustersBusters...take a bow!
I have the highest respect and adoration for all of the folks who work with and for ClusterBusters inc.
I have been chronic for 15 years. But was typically misdiagnosed up until 2 years ago. My condition was escalating and I was planning a proper ending to my life, leaving behind two young children.
When I was diagnosed, I went from elation at finally being able to validate that this was a medical issue and I was not insane. Quickly I went to deep depression at realizing there was no hope for relief. This is for life. The rug was violently jerked away from under my feet.
Then I just happened to find ClusterBusters while googling my condition. And that's where my life changed forever.
I am learning to LIVE with cluster headaches.
ClusterBusters gave me the resources for treatment suggestions. Both preventative and abortive. They educated me easily and quickly on what it is that I have and the lingo that the doctors were using. They also are how I found my current neurologist, who knows all about clusters.
I attended a conference in Las Vegas. The opportunity to learn from the best doctors and other cluster heads. And finally for the first time in a long time I was validated. And armed with tips and tools to get me through. Not to mention the help and resources to deal with my other headache disorders.
I owe my life this organization. Through all they do my life is vastly different.
I have suffered from clusters for the last 4 years I was misdiagnosed by several physicians and had absolutely no relief from this horrid affliction. After some research on my own I was fortunate enough to find this wonderful organization on the internet. Within a couple of hours of reading the information I found there I was 99% certain that clusters were what I was suffering from. Using information they provided me access too I was able to obtain a few, very cheap,commonly available vitamins and get the first break from agonizing pain that I have found after wasting hundreds of dollars on doctors and medicines for nothing. In addition this community welcomed me in and gave me the first understanding that I have felt since this horrible period of my life began. CB in essence led me by the hand to a competent doctor who specializes in this rare affliction and I was diagnosed within the first 10 minutes of my visit. I was prescribed a couple of extremely common affordable medications and had dramatic improvement within the first 4 days after my initial visit. This affliction has the nickname 'suicide headaches' for a very good reason as I can fully attest, and I am very certain that if I had not been treated so wonderfully by the Clusterbuster community I would no longer be alive to write this review. Thank you so very much Clusterbusters. Jeff Suding
As a chronic Cluster Headache sufferer for over 14 years, I cannot begin to explain the value of this organization.
I've had cluster's since I was a child and went misdiagnosed for 18 years. The help and support I have received from this organization has been life changing. Whether it is support in finding a doctor, help in managing pain or just being there to listen when no one else understands... they are here. And I am so very grateful.
I have had cluster headaches for 17 years and I got more info on this site in a day then I did from any of my doctors in all the years I have suffered. For me this site is an invaluable resource.
Great people and great support. I wouldn't be living mostly pain free if this organization did not exist. They gave me my life back!
Clusterbusters Inc. has helped more cluster headache patients either be rid of or greatly reduce their pain than all of the traditional medicine people I have encountered. I am one of the ones that has gone into remission and have been that way for almost two years now - after alternating between both chronic and episodic for the previous 20 years. I have my life back. It seems so trivial and insincere, but thank you, Clusterbusters.
For years I have suffered alone with this. I have recently found Clusterbusters, and in finding them I have found information as to how to help manage my situation, I have found assurance that I'm not alone, and I have found a family that truly cares for and supports each other. All so priceless to me. Until recently I had never spoke to another person who truly understood the pain I suffer and the difficulties that come along with it, now I know that I am not alone. Just knowing that there are others who truly understand what you are going through is an amazing feeling, but the caring and support they all have for each other is beyond description. Thank you
If it weren't for Clusterbusters I'd be lost. Without them I would be floundering around with no knowledge of my condition. They have given me hope of and thanks to them I have better quality of life
I find myself reading more and more from this site. I was diagnosed 7 years ago and just recently have had more issues surrounding my clusters as they seem to becoming more frequent and longer lasting so any information I can get is very helpful. This site is full of great info, I am gaining more knowledge here than from my own doctor.
This is the most complete site I know of that explains all aspects of cluster headache treatment. Cluster Headache is called the suicide disease because of the extreem pain and psychological distress it causes. I know the doctors on the Medical Advisory panel. They are top notch physicians that have dedicated their life to understanding this disorder. Clusterbusters has helped thousands of sufferers who had nowhere else to turn years ago, and is now the easiest place to understand treatment of cluster headaches. The staff are professional and spend hours of their time helping others. A wonderful organization of caring, compassionate people.
I have been a Cluster Headache patient for over 35 years, of which over 12 have been chronic, meaning multiple attacks almost every day, with most reaching a pain level in the 7,8, or 9 range. In my experience, breaking the second toe on my foot on Saturday night and wearing wingtips to church on Sunday morning at a level 5, just for reference.
I have been a part of the Cluster Headache community through www.clusterheadaches.com, the parent organization from which Cluster Busters was formed, and I have been an active participant in both organizations since their inception.
The research and advocacy from this organization gives me hope for the future, and a potential for relief from this very painful disease.
I had my first CH attack when I was 19. It took nearly 7 years to finally get the diagnosis of Cluster Headaches. Even then, had it not been for a book on brain disorders that my mother gave me, my doctor my have never arrived at that diagnosis. It then took another 6 years to find a Neurologist that had any knowledge of what CH was, and how to treat it. It was the mid 90's. The Internet was just a 'baby' still. Resources the likes of Clusterbusters and O.U.C.H. were not around yet. There were no support sites I could log into and chat with another unlucky soul that had been cursed with the same affliction as I. When I finally did find Clusterbusters, I was amazed at the wealth of information available. I cannot tell you how many times I have taken information I found on the Clusterbusters site to my Neurologist for her take on it. Some of the information, was good, some not so good. Whether the information was good or not is not the point. The point is that there is so little actual research done on CH, that the only places to find new ways to battle the beast are on user forums. Forums that consist of us 'guinea pigs' testing a new drug or theory. If it were not for these forums, I can 100% positively say my life would have been over several years ago. Were it not for Clusterbusters, I might have never found out about the use of 02 to abort an attack. I may have destroyed my heart using triptans for relief. I may have destroyed my liver an kidneys taking (and becoming dependant on) any one of the many 'pain killers' doctors have prescribed over the years. I may have lost my job and my ability to be a functioning member of society were it not for the support and advice I have received from the members of those forums. I am very grateful for Clusterbusters, and for all of the other CH forums and websites that have allowed me to live a (mostly) normal life.
Bob Wold, founder of Cluster Busters is in my opinion the most dedicated, knowledgeable, kind, understanding, advocate and supporter I have found after several years of research. The clusterbusters website is full of necessary information that should be studied by every CH patient and every neurologist and pcp. The suggested treatments have proven to be effective on a scale unseen in the normal medical field and are saving lives every day including my own.
Clusterbusters ROCKS! John Fletcher, Cluster headache sufferer for 40 years.
Clusterbusters helped me back in 2008. Lots of good information and support. 2008 was the last cluster headache I've had. I wouldnt say I'm cured but because of clusterbusters I am certainly prepair for the next go round with a cluster cycle. Never in my life have I had that. Clusterbusters is golden to me.
I am a Cluster Headache survivor. Before I found this organization, I was a Cluster Headache sufferer. Clusterbusters has literally saved my life.
I was incredibly lucky to find Clusterbusters so fast after I began having Cluster Headaches.
The information, support, and encouragement SAVED MY LIFE.
They are leading the charge in advocacy, research, and education and deserve the highest of honors.
Brent
It is often a very lonely and scary place to be when you are one of the .01 percenters of the population who suffer this incredible life stopping pain.
Clusterbusters broke the isolation and subsequently the fear associated with feeling so alone and misunderstood in my suffering. Even the best of the medical community left me confused and afraid.
With compassion, encouragement, knowledge and the opportunity to become attached to a community of like souls, CB has proven to be a literal lifesaver for me.
My son is a sufferer of cluster headaches. Had we not found this organization and the wonderful people associated with it, I'm not sure I would still have him. Being a part of this organization has given us hope, friendship, tons of help and suggestions. The events we have attended have been of enormous benefit. So few people truly know this condition, and it is so uplifting to have the opportunity to spend time with people who "get it". If you are a sufferer or supporter, get involved with this organization, it will change your life.
I found this amazing group of people when I was at a point in my life that I did not think I could keep fighting the loneliness and the awful CH beast. The friends I have met in Clustersbusters are beyond wonderful! Everyone welcomed me and treated me like family, I was given the ability to have a voice in this fight and that to me is priceless!
This is the real deal. There are a lot of sites out there that pretend to know something about cluster headaches. This site knows more than many neurologists, and the information is right here to be shared. Outstanding compilation of information by sufferers, professionals, and suffering professionals. Well worth looking through EVERYTHING here.
The advice and help offered by Clusterbusters is responsible for my survival. Cluster Headache is an insidious and brutal condition to deal with, and without an organization like this which is willing to do whatever it takes to find us some help, I think a lot more of us would perish. I can't imagine a cause more worthy of support.
Before I was even diagnosed with cluster headaches, this group of amazing people invited me in as one of their own. I have the privilege of learning about all the treatments available to me from very educated members. I've had migraines for 26 years and it's been a constant struggle to live life when they become so disabling. I look forward to advocating along these incredible people I now consider my second family.
I would be dead if it weren't for this organization. I know that sounds like a pretty bold statement, but Cluster Headaches are a pretty bold and horrible experience. So many people commit suicide because of this disease, and after 2 months I was ready to add my name to that long and growing list. Clusterbusters not only saved my life, they changed it forever. The information I received from this group is truly invaluable. The people involved are kindest, most compassionate people on Earth. I am so happy to have found this organization, and I wish them nothing but continued success in the future. I owe them everything. Truly. Every day that I am alive..... It is because of the Clusterbusters organization.
Clusterbusters is a non-profit working extremely hard to get awareness to the most painful condition known to mankind, Cluster Headaches (aka Suicide Headaches). They are advocating the only effective treatment that most doctors will not talk about. These selfless people have saved countless lives. When I say this group of people have saved my life, I don't exaggerate. Many a nights I have thought about putting a bullet in my head to end the pain. Thank you ClusterBuster, Thank you!
This nonprofit organization literally saved my life. They are spreading awareness and searching for answers for treatments for the cluster headaches, the most severe pain condition known to mankind. Currently there is no official treatment for cluster headaches so this organization is doing the most important work that is actually saving lives of the patients and offering them coping mechanisms and help so patients are able to have better life quality and function which directly affects to the wellbeing of communities, work, nations, worldwide. They certainly need more attention for their dedicated, determined, efficient and long-term unconditional hard work. These people are amazing.
