Clusterbusters Inc

If it wasn't for Clusterbusters my family and friends would be visiting my graveside.... It's that simple, they saved my life ..... they gave me hope for the future and the support I so despertly needed. And through Clusterbusters I've met hundreds of other sufferers who were in the same situation as myself, misunderstood, isolated and frustrated at living with one of the most painful conditions known to medical science.

Awesome organization. Lots of knowledge, a great place to meet like minded people who suffer the same things. Very supportive, great conferences, events and wonderful staff. Thanks Clusterbuster!

I love it! In for life! They host an annual conference every year as well as work with other non-profits pertaining to migraine and other headache disorders! Best of all they don’t care how we get pain free as long as it happens.

Have learned so much from this site. You all are awesome ������

This organization saved my life. The amount of knowledge and medical information available thru them is amazing.

This group has become family. They helped us when no one else could. Keep up the great work!!!

The information that this group provides, and folks on the forums literally saved my life! In a world where profits decide what conditions are studied and what drugs are made, cluster headaches fall far by the wayside. Clusterbusters has been one of the only trustworthy places for information on this disease. Information that you can actually take to your doctors and inform them about the newest and most effective treatments that are actually working. The advocacy, research, and Love of this group is just unmatchable! Thank you so much!

These people have helped me through some really bad times in my life with pain . The empathy of everyone is brilliant .

Clusterbusters has had a massive impact on my father and our family. Providing resources, suggesting medication that has helped, furthering research and bringing a community of survivors together when no one else understands them.

Thank you Clusterbuster and all that you have done.

priceless info on clusterheadache treatment unavailable anywhere else

I find it difficult to put it into words how precious this organisation is I suffer from an incurable brain condition, that is excruciating, Neurologists refer to it as the most painful condition known to man. It often makes you wish you weren't alive. Without exaggeration Clusterbusters have saved my life, provided hope and comfort in the most harrowing times. In my experience, they target their support in three keys areas. They disseminate what the best practice treatment options are to sufferers, from the worlds leading experts, in an easy to uderstand format, handing you the power to pursue the most effective medication. They advocate for the most effective treatment, to medical practitioners and policy makers, to bring about really significant changes at the top of the chain. Vitally, they provide life changing acute therapeutic support. They connect with the sufferer, in such a poinient and profound way, that you have the strength and hope you need to battle through the hard times and not succumbe to the Cluster 'beast'. This support has come around the clock, it's individualised and given with grace, warmth and wisdom. They are truly amazing

Cluster Busters saved my life.
I had suffered over 30 years had been to so many Doctors and Neurologists and almost died because the pain was so bad and I just wanted it to end and I was all alone. This group gave me not only hope but also information and friends that truly understood what I was going through. After being involved with this group I came upon other options for treatment and under Doctors orders I tried something new. I am currently 2 years and 4 months Headache free. None!!!!
I was chronic and would get them almost daily for over 30 years sometimes as many as 5 a day. Now NONE ZILTCH ZIPPO. 0. SAVED ME

THANK YOU FOR EVERYTHING.

This organization is amazing. Attending the conference they organize is one of the best things I have ever done in 16 years of dealing with this medical condition. They bring people together and offer support to those that are often going through some very difficult times. I'm so thankful and grateful that have found this nonprofit!

Amazing information, support and community. They literally saved my life.

After many years of suffering alone with the horrific pain cycles of cluster “headaches” brings, finding this group was a Godsend! They work tirelessly and generously to help each other, no matter where in the world, and to advance studies, and effective treatments to help those who suffer. This group means so much to so many, even the difference of life and death (giving up, and committing suicide)…

I have been a refractory chronic for almost 20 years. Cluster Busters provided the support and the knowledge for me to manage life better. By far one of the most altruistic organizations around. A true godsend.

Clusterbusters, Inc. is a fantastic organization! They have helped me navigate through the excruciating reality of Cluster Headaches. If not for this organization, I would not have learned of the many alternative treatments that are available to alleviate the pain of CH. The people who run Clusterbusters are totally dedicated to helping people and they are true Rock Stars!

As the other reviewers say, this place restores lives that have been torn up, and saves lives that have been put at risk by this horrible disease. It does that at every level: one-on-one at the website and Facebook page where people with CH show each other how to manage a condition that most doctors don't really handle well; in groups at its amazing annual conference; and systemically through research and education.

Cluster Headache is a somewhat rare neurological disorder. When my son was first diagnosed with it there was very little information available on Cluster HA. I found Clusterbusters forum online and it was like someone threw me a life line. I was able to connect with other people who understood the condition and I learned so much about the current research going on. It's hard to believe but even today some doctors don't know what it is or how to treat it. I have downloaded information from their website and used it to inform people who don't know what we are dealing with. I am grateful for this organization and I hope they continue to grow. I believe the advancements made in CH treatments are partially due to this organizations efforts to raise awareness of CH and how it affects the lives and families of those who suffer from it.

Clusterbusters works tirelessly to support the unfortunate people afflicted with cluster headaches. Representatives have lobbied in Washington to persuade Medicare to cover oxygen for abortive therapy in treating cluster headaches. Their research is ongoing to find new therapies for the treatment. The support they provide to the clusterhead community is invaluable . Clusterheadaches are the most painful medical condition known and are called suicide headaches since this is an alternative some sufferers have used to provide relief. The annual conference provides a venue for clusterheads and supporters to meet other sufferers and gain new insights to therapies available. Without clusterbusters I would've been lost for all these years. Ryan A. Nagy (sufferer for 38 years so far)

These people changed my life. Everyone is willing to help each other, no matter what.

Having found this organization has quite literally saved my life. Expose me to treatments and opportunities and options that I never knew were there and help me think outside the box to control and basically eradicate the pain from my cluster headaches. There’s a camaraderie in a sense of community that you can’t find anywhere else. This group of hard-working individuals presses forward each and every day and push the envelope for people like me who don’t know what else to do.

With out these people, would live in despair with this sickness.

Clusterbusters is an amazing organization that provides positive support and education for people living with cluster headache.

These amazing people literally save lives . You will find the most compassionate, empathetic, understanding people here. A support group like no other. The kindest people on the planet. They work tirelessly to provide resources, support, and love.

I suffered from cluserheadaches for 25 years without a diagnose, without anybody who understood what i’m going through and no working medication. Then i found clusterbusters, fellow clusterheads and the right treatment. It saved my life!

This organization changed my life and gave me hope during a extremely dark time; They continue to help countless others that endure the Worst Pain known to mankind.

I was in a really bad place when I met the clusterbusters crew at headache on the hill , this organization literally save my life. The work they do to help people cope with debilitating condition known as cluster headaches ( aka suicide headaches) is amazing .they helped me and inspired me to pay it forward to help others . Advocating to the CDC for the approval of oxygen as a first line treatment for CH is going to save thousands of lives.
I can never repay them for all they do !
Thank you to Bob Wold , Eileen Brewer ,Ainslie Course and all the volunteers that make Cluster Busters a great non profit !

Great community! Thank you very much for your advise, support, videos etc.

Fantastic group. Really helpful for sufferers of these little known horrendous headaches. A real survival line for CH sufferers

This lady saved my life and made me realize I can and will get through each and every attack.

I've also learned that I can have a life and manage this awful affliction at the same time.

Thank you just doesn't cover it ☺️ only wish I had met Ainslie 20 years ago.

So much knowledge and support from such a lovely lady.

Simply put, I would not be alive were it not for Clusterbusters.

Such a debilitating affliction which has little to no coverage, and cluster busters are doing a fantastic job for support and education.

I am friends with the daughter of the man that started this so I have followed them since the start. They are a wonderful group of people that do so much to help the cluster headache community. They really do make a huge difference in many people's lives! They do important life-saving work!

Cluster busters is life saving and life giving! The work they are doing is essential and important.

Best nonprofit organization that saves so many lives every day. Selfless and always looking out for eachother!

Without the support of this group I would probably not be here. They helped me deal with, both physically and mentally, my cluster headaches!

A wonderful organization they have help so many hen there were so little that our health care system couldn’t.

They really go the extra mile to help people struggling with debilitating cluster headaches. They have a lot of compassion and great information for sufferers and their families. The founder's tireless work to never give up on finding methods and solutions to get rid of these horrible headaches.

The best organization there is for supporting and advocating on behalf of cluster headache patients. Wonderful community, excellent leadership, strong vision. They are taking patient advocacy to a different level. Top notch.

With a husband and daughter with Cluster Headaches...I don't know where we would be without all the resources and information Clusterbusters provide. To be able to talk with other people that have Clusters is extremely helpful and you don't feel so isolated....Thanks to Clusterbusters.

Clusterbusters is a top-notch organization! They literally changed my life. From their online community forums which are a wealth of useful knowledge, to their activism on capitol hill, to their regional support groups, Clusterbusters means the world to me. Please consider supporting their noble, lifesaving cause.

This organization saved my sons as well as many others lives. Thanks to the tireless efforts of this group sufferers can lead fulfilling lives dispute the horrible condition of having cluster headaches. It saves the supporters too !!

This non profit has saved so many lives. They share knowledge and advocate tirelessly for a brutal disease that most don’t even know exists. They work through their own pain to help others. They bring people together to empower and educate. They truly give their heart and soul to the community they serve.

My husband has benefited from so much of the wisdom and guidance that this group has provided. Thanks so much to clusterbusters for your help.

I found this organization 5 years after my cluster headaches began. It was life-changing to get to meet others like myself and get to join this wonderful group of humans

I have been a member of the cluster busters forum for over three years and it is a wonderful place to speak with others about cluster headaches and how to manage them.

Very helpful support and information, my life has improved greatly since I joined. TY!

-Scott

Cluster busters is a wonderful organization that consists of cluster headache sufferers, their family’s, and their supporters.

Being a 23 year sufferer of Cluster Headaches I applaud the work being done by Clusterbusters. The worst years of my life were the first 6/8 years where there was no information available on how to treat this horrible disease. The folks at Clusterbusters and on-line forum fellow sufferers started publishing real world treatments to help us that were given no help from the medical community. Their research and dissemination of information into a natural cure was nothing short of ground breaking for 1,000’s of people dealing with pain noted as “equal to amputation”. Kudos to Cluster Busters!! Chuck Spence. Point Of Rocks, MD

My son was diagnosed with Cluster Headaches at the age of 21. ClusterBustees is a lifeline for me - and without the knowledge, network, research and community it provided for us, I don’t know what I would do.

This is an amazing group. So much support and resources. I am so glad to have found it!

Clusterbusters is my to go place when I need help and support with my Trigeminal nerve disease also known as cluster headaches or suicide headaches.

When i was desperate for answers this group helped me. It saved my life

Clusterbusters has been around for over 20 years and has done great work supporting research into treatments and providing emotional and practical support to cluster headache sufferers.
To say more, I'd have to write a book.

This group saved my life.. they gave me the knowledge and support that no one else could.. they gave me my life back! Forever grateful

The information clusterbusters has is UNMATCHED! So many of my questions answered. I’m so grateful for the resources they have available. Not to mention just how caring Bob is. He responded personally to my email and you can tell he cares about the community.

Clusterbusters is a life saving organization. When you go through the kind of pain a cluster headache patient has to endure, and you know you have someone to help you keep going and on your corner whenever you need it, there is no greater feeling.

Without cluster busters I would never have found psilocybin and how to use it...i am now cluster free for 2 years after 30 years of yearly 4 month clusters....so thankful

Clusterbusters is an amazing organization. The staff and board members are really in the trenches with advocacy and walking alongside the patients. They support research and do all they can to raise awareness.

Clusterbusters has been dedicated to Education, Support Research and Advocacy for over 15 years. I have been attending their yearly conferences since 2017 and have learned so much about this disease. They bring in top doctors and experts on new therapies to their conferences. Their president, staff and board members are 100 percent committed to sharing the latest research and knowledge with those of us who live with Cluster Headache. They truly are a great nonprofit.

Everyone at Clusterbusters is so welcoming and willing to share their knowledge. As both a patient and healthcare professional, I appreciate the expertise that Clusterbusters has given to the Cluster Headache community.

ClusterBusters have changed my life with every cycle I get!!! That are truly amazing people and they really get it!! People just don’t know the true feeling of these clusters and only if you have them you truly understand and a community like clusterbusters is god sent!!!!

I've never met another person who has the great misfortune of having cluster headaches. 99% of physicians have almost NO knowledge of cluster headaches. I am not exaggerating that. If you go to Google and type these words in "What is the worst pain a human can have," Cluster headaches is first up. I've been so very alone with no one to relate to. The pain is so very indescribable and unless you've experienced it; there is just no way you can understand it. So it isolates you. Cluster headaches are also called "suicide headaches" by the medical profession.

When I found the Clusterbuster web site, a wealth of new information was available to me. I chatted with others who offered their experiences with cluster headaches. I've learned so much from my fellow cluster victims. I've finally had others to talk to who knew exactly what I was experiencing personally. I'm very glad this group is there. It has made a positive difference for me.

Clusterbusters is an excellent organization that has changed the lives of so many. When I was in constant pain and feeling desperate, folks from Clusterbusters recommended a doctor that both changed and saved my life. The site itself is an incredible resource which is important because there is less information available about this disease. They provide education, support, and advocacy. The Clusterbusters community is unlike anything I’ve ever seen before. They show up for each other in every way possible and Clusterbusters created that community and camaraderie. Each year, advocates from Clusterbusters show up to participate in Headache on the Hill in D.C. They are working to change the world at the local, state, and international level. I give them my highest recommendation.

Clusterbusters saved my life, gives me hope and a reason to keep fighting. I have no doubt in my mind I would not be alive today without this amazing nonprofit. Every clusterheadache patient should know of Clusterbusters. They are real heroes.

These members have given their lives( and some literally) to help others with this scourge. My husband used to dread the unbearable pain hourly for 9 months straight every nite. He might have taken his life if not for Clusterbusters

There are no words to express the value of this very groups existence. As a mother of a young child with this condition, the love and support from this group is what got me/us through. Now that my son is grown, this is his family. I sleep better at night just knowing that. This non profit does not know or care how much money you have, the color of your skin or your gender. They know pain and help any way possible, tirelessly educating and advocating for all those who have to find a way to live with Trigeminal Autonomic Cephalalgia also known as Cluster Headache.

Clusterbusters has given me hope and community. I have no doubt in my mind I would not be alive today without this amazing nonprofit. They’ve also helped me turn my pain into power by letting me advocate with them at the annual Headache on the Hill event. It’s more than a nonprofit, it’s a family that breathes life into many who feel dead or hopeless.

I'm grateful for Clusterbusters providing helpful advice and fostering a safe support space online. I've learned more about my condition, and about how to talk about it with people in my life. Things seem far less dire with more knowledge. I appreciate this very much.

After living with Horton's neuralgia (cluster headache) for 20+ years I had written my last will and testament at the age of 35. Healthcare and experts in my country had done everything they could. I found Clusterbusters on the very last minute and am alive today 10 years later because of this amazing organization. As an advisor I use the knowledge, care and energy that is Clusterbusters regularly. These people save lives.

10 years ago I had my first Cluster, I thought I was Dying.... It took a long time to finally get to a Neurologist.. He was a Pusher...Tried Everything he could in drugs... Nothing helped and he seemed pissed that I wanted answers... After my Las Visit I contacted another Neurologist Dr. Judy Lange in Denver, She instantly told me what was going on and told me about CLUSTERHEADACHES and This Group and gave me A name of another Cluserhead Ashley Hattle Crimshaw... Ashley had been holding Meet ups for Clusterheads in Denver...My life changed from that Moment forward This Group Saved my Life.... Thank You Thank you....

A stellar organization which has saved the lives of thousands and continues to do so daily. The most top notched advocacy group and educators to both patients, physicians, and researchers.

Thank you always

My son has suffered with clusterheadaches for 20 years. For a very long time we had no idea what was wrong. Until one day I was searching 'headache disorders' and he saw the picture on my screen. His response was 'THAT'S IT'. It was a picture on Clusterbuster's web page. From that moment on, we found hope. Thank you to thîs wonderful organization.

Does a fantastic job of advocacy, education, and furthering research for Cluster Headaches. Many lives have been saved through their work.

Clusterbusters.org has been a life saver for me and so many suffering with cluster headaches. After years of searching for a diagnosis, back in 2005 I finally got one. But very few resources, support groups were available EXCEPT for Clusterbusters.org! I found them and have been educated, updated, included, supported and loved by Bob Wald and hundreds of other relentlessly devoted people who truly CARE about this debilitating and sometimes lethal affliction. Clusterbusters.org isn't just a non-profit, it's a home, for all diagnosed. Without it, I would not have gotten the information and support needed to continue my battle.
With Sincerity - Jennifer Gregg Ramey

Clusterbusters is a great advocate for cluster headaches. They fight in DC to help get better treatments for people that suffer from all types of headache conditions. They are here to help and they do help so many. They are the real deal ! Thanks Clusterbusters for all that you all do!

This organization goes above and beyond each day for the individuals suffering from Cluster Headaches. The support this organization offers is one of a kind and they have saved many lives, including my own. I cannot thank this organization enough. The conferences they hold each year are so informative. I’ve learned so much from attending from the doctors, researchers, and Bob Wold. This organization needs more recognition. I love Clusterbusters!

Clusternbusters is committed to finding an effective treatment for the worlds most painful condition. They have helped thousands of people who had no where to turn find relief. Clusterbusters is truly a life saving organization.

By the time I found Clusterbusters 5yrs ago I had ALMOST given up hope. The information and the help I received saved my life.

An amazing group of people who have worked tirelessly to help Cluster Headache sufferers. Their research, outreach, support and advocacy changed my life.

Clusterbusters is an unselfish, efficient, compact advocacy organization that goes the extra miles. This long standing, organization boldly makes an impact for everyone battling cluster headaches. Cluster headache is the most painful of headache conditions. It is a debilitating condition affecting a small portion of the population disrupting lives, creating immense disability and disproportionately leads to suicide. Treatment options are limited and often difficult to obtain secondary to lack of understanding and reimbursement issues. Clusterbusters uses its resources responsibly to support individuals with this poorly understood condition. Support is emotional, informational and via advocacy. Resources are also directed at research support seeking effective treatment options. The organization thrives with a network of dedicated volunteers making a real difference in peoples lives. Working with limited funding, Clusterbusters champions coverage for treatment and research while maintaining an informational clearinghouse and support group online. Working with government agency's and academic researchers Clusterbusters is at the forefront of understanding and researching treatment options for people managing cluster headaches. The limited resources they have are well used and responsibly disbursed with minimal overhead in the mission of serving the population afflicted by cluster headaches.

Bob Wold and Clusterbusters are tremendous advocates for Cluster Headaches (and other primary headaches). There are involved in political advocacy with Headaches on The Hill [Capitol Hill], research, and information sharing. This information includes both mainstream medical treatment, as well as alternative treatments as this is a stubborn and difficult problem. You can and should join me in support of this faithful and tireless organization that does so much good for patients like me.

They’ve help d me live my life again at least he most I can with Chronic Clusters

ClusterBusters is a blessing. Without the organization and it's dedicated leadership and members many sufferers, including us, probably wouldn't be around....THANK YOU!!

They are very helpful in getting information and using it to try to make the public and our federal government award of our plight. The group is well versed on how to get news out to everyone. Plus they advocate for all in chronic pain of some sort.

Misdiagnosed with migraines 30 years ago, then diagnosed correctly 25 years ago, I've relied on my neurologist (a globally recognized cluster headache specialist) for education and information. Sadly, for the past 25 years, I've been under-educated and poorly-informed. Joining Clusterbusters earlier this year and attending their recent conference have been life-changing, life-saving, transformative experiences. I've learned more in the past few months than I've learned cumulatively over the years about the condition, medications, treatment options, research studies, opportunities for advocacy; the list is boundless as is the generativity which is a cornerstone of the organization. Of particular note, is my gained awareness that there are countless others like me, ready and willing to connect, to share freely their experience and hope. Until recently, I had resigned myself to the dismal, stark reality that I'd likely forever be alone with my experience. In 30 years I'd not met another cluster headache survivor. With gratitude, I can say I have and because of Clusterbusters I'm confident I'll continue meeting others who've traversed similar trajectories, others who've experienced the abject despair, terror, hopelessness, helplessness, and wholly incapacitating pain associated with cluster headaches. Clusterbusters is a vital cluster headache community resource for survivors and supporters and interested others, a life-line onto which one can take hold of and no longer feel adrift, untethered. It has become my absolute first line resource for information I require regarding the condition and the whole of managing it. My only regret is that I didn't find it sooner because, now that I have, I can't imagine letting it go. In its absence, I'd be loathe to consider possible adverse consequences for some/many of those who've found a home in the organization and, perhaps especially for those who long to find and continue searching for a credible, singular, multi-dimensional resource available for providing them with the help they so desperately want and need.

Clusterbusters is a life changing organization and has helped many people find support, treatment, and a will to continue living.

Clusterbusters gave me my life back. 15+ years I suffered with Chronic CH, dealing with 5-8 attacks a day ranking from a 7 to a 9 on the pain scale. (As a point of reference, a broken toe on Saturday night and wearing wingtips to church on Sunday is a 5.)

From that experience, through what I have learned from Clusterbusters, I just celebrated 61 weeks 99% pain-free. Yes, I am counting! The longest I ever went pain free during that 15+ years was one 90 day break. I had a few two or three day breaks, but they were maybe once or twice a year. I cannot say enough good about Clusterbusters Inc and what Bob Wold and the others in the organization are doing for those of us who have the world's most painful medical condition.

I honestly would not have survived with Cluster Headaches as long as I have without Clusterbusters, and that is a fact. Their support, help, and research has kept me going. I have chronic cluster headaches and have lived with them for over 8 years now. Doctors have given up on me, but Clusterbusters hasn't. They helped get me more relief than medical science ever did. They gave me more support than medical science ever did, and more understanding than they ever did.

I came to them broken, and at a point where my last resort was either try them, or end up dead. They saved my life.

Thank you Clusterbusters!

Clusterbusters has been leading the way in support of Cluster Headache patient advocacy, support, and research. Their hard work and efforts have led to dramatic quality of life improvements for myself and others. I am so thankful for the work they do.

Clusterbusters is an amazing nonprofit that has helped so many people with this horrendous disorder, including myself. Clusterbusters saved my life.

Cluster busters brings together people that are suffering from the most painful condition known to man. Through the tireless efforts of this organization, many treatments have been found, communication between both patients and doctors has led to great advances in treatment, and most importantly, many lives have been saved. The ongoing work will continue to improve the quality of life for patients, and I firmly believe that a cure will be found as a direct result of the efforts of these amazing people. Attending a conference is life changing. Bonds are made that are as strong as family, and the conference brings together people from all over the world. I can not express in words just how powerful the impact of this organization is for this community of patients. Thank you to all involved! Joe Sacks

I am a spouse of a episodic headache sufferer. It is agonizing for both the person that has it and the family that has to watch and feel helpless. This awful "illness" needs to be brought to the forefront of our medical and pharmaceutical community ASAP and the research needs to continue. Until you have cluster headaches or know someone that does...you will never understand the level of pain. Something needs to be done about this. This isn't about making money for our pharmaceutical companies...this is about finding desperately needed relief. They call it the "suicide headache' for a reason. How many lives have to be lost and pain endured before something is going to be done?!?!?! I am so thankful for Clusterbusters. It has given us so much information and people who understand at a time when you feel so alone.

As a supporter of a cluster headache sufferer, I can assure you that dealing with cluster headache can make you feel very lonely and helpless. Finding Clusterbusters Inc. has been instrumental in helping me know I am not alone and I have become a stronger, better supporter. No one understands how horrible this medical condition is better than those who suffer with it and their supporters. Clusterbusters Inc. offers much appreciated support, compassion, education, treatment options, and advocacy and I am very thankful for them.

I have had clusters for 20 years now and can say I was truly lost until I came across these guys and gals. The work they do is tireless and Bob Wold remembers everyone and always makes time to respond to any query.

I have been lucky enough to be in remission for 2 years but now they are back and this is the 1st place I visit as I know I will get the best help and advise from people who really understand this debilitating disease...

I recently attended the 10th annual Clusterbuster Annual conference. My 10 yr. old son was diagnosed with episodic cluster headaches, earlier this year. I was desperate to get information on how to deal with, and live with this dreadful condition. Clusterbusters is an amazing group of sufferers, supporters and advocates. So many of the inroads in treating this disease have come from the interchanging of ideas and therapy options that the sufferers on the front lines have shared via groups like Clusterbusters. I am now armed with knowledge, options and incredible support from others I have met through this group.

ch sufferer for many years first at age 7
I had breaks but they went super chronic 7 per day kip ten three hours long
now these days I take melatonin 2 mg also verpamil but ween of it when possible i do notice if I dont have bits of verpamil i get bad shadows but am much better now aftrer finding about melatonin
May people with ch have the strength to not give in and keep fighting

Clusterbusters, President Bob Wold, has saved not only my dads life (chronic Cluster Headache Sufferer) but the lives of so many others that have to live with this undescriable pain, which is known to be the worst pain know to medical science thus the name "suicide headaches". My dad moved in with me years ago at age 28 and continues to live with me due to this debilitating condition/disease.

Bob Wold's knowledge, wisdom, compassion and commitment to educating and spreading awareness about Cluster Headaches is groundbreaking. I ask those of you reading this to take a minute to go to the cluster buster website and learn at least one fact about cluster headaches. Pass the one fact on to one other person asking them to do the same. That one thing could save so many lives. It saved my dads life and I can 100% say without a doubt Cluster Busters with President Bob Wold will open your eyes to this.

Cluster busters and it's advocates, members and support gave me my life back and the ability to take control over cluster headaches. Life saving.

A friend of mine donated cash to this place and they denied ever receiving the donation until my friend posted the proof on facebook after they had been ridiculed and bashed for claiming to have given a donation and the owner of cluster busters was forced to admit my friend gave them a donation but that was only after the people of cluster busters attacked him.. I wouldnt advise anyone giving to these people and ive contacted the IRS to let them know they are taking cash donations and not reporting them .. good luck with that

The reason I give them 5 STARS? This volunteer group is literally driven by the spirit of caring people helping each other!

What began as a small online support group has grown into a national cluster headache support/research/education/advocacy non-profit. Through their annual conferences, advocacy work, and projects which bring together patients, healthcare stakeholders and researchers, Clusterbuster's paves the way for medical advances on a disorder many in our community had barely heard of a few years ago.

Extraordinary organization!

GAVE money to the owner of this place only to have its members say I was lying about donating and the owner of cluster busters refused to set the record straight publicly that I gave a donation and tell the people in his organization to stop accusing me of lying. I would never give to these people again they even tried to ruin my business by saying I was making money off them and not giving them my donation which was proven false when the owner of clusterbusters was forced to admit I did when I posted his thank you privately to me. these people are horrible.. calling me a liar and saying I never donated when I did. I have proof they did this and proof I donated.. do not give to these people they hurt people and dont care about people trying to help them . who takes someone's money then allows its organization members to attack the donator? and does nothing to stop it or set the record straight? look up holy grail mushroom spores on facebook for proof of what im talking about before you donate to these people..

Our Life Changed for the best, 1st time we met with the group was to advocate in Washington, DC for Headache Disorders. They are for the people and not there own pockets like so many groups out there. Looking for a cure and are there for the patients and families. Advocating, support and research!!!

I was diagnosed with CH last year after being misdiagnosed with migraines for 10 years. After I was informed of what kind of headache I was really having, I started doing research. Clusterbusters helped me figure out different things I could try to help ease the pain during an attack. Without them I would have been clueless about treatment options for these headaches. I am grateful that I found their website and an able to continue with my life.

Clusterbusters and Bob Wold have given me my life back. In return, I have devoted the last ten plus years of my life to volunteering and advocating for others with this horrendous condition called cluster headache, aka suicide headache, aka the worst pain known to man.

Absolutely the best and most current information for those suffering cluster headache. As a non profit clusterbusters is truely an advocate, always raising awareness.

Yes, as the other commenters have said, this is a great organization with compassionate, knowledgeable people everywhere--in its leadership, in its members, and in its volunteers.

This website has amazingly compassionate people and a wealth of information!

Knowledge, support, compassion...real people who truly understand this horrific ailment! I am so very grateful for them!

Clusterbusters saved my life. I hope every sufferer find this organization.

ClusterBusters is a fantastic resource for folks suffering from this awful syndrome. Its extensive library of information on treatments is impressive, but the people active on this site are just plain awesome. Post a question, or describe what you are going through, and you will be greeted by a chorus of replies providing information, ideas, and support. Cluster headaches are agonizing, but the real peril they pose to those afflicted is despair, the suffocating sense that there is no escaping recurrence of the pain and little of life to enjoy between the hits. ClusterBusters offers hope. Count me as one of many grateful beneficiaries.

These people are like family. Don't know where my husband and I would be , if not for them!

I am a disabled person -- disabled from chronic cluster headaches. 27 years ago, next month, I had my first cluster headache at work. I thought I was dying from a stroke or blown aneurysm. I've never had a 30 day pain-free period since then. The attacks can last up to three hours each and can have as many as a dozen in 24 hours. If that's not enough of hell, "medical science" has added quite a few more levels of hell going through nearly the entire pharmacopeia in a search for relief.

Enough about me -- Clusterbusters has tons of information about this condition. It advocates for us, the victims. They petition the government to invest in research for primary headache conditions. They explain the medical and non-medical treatments that have been found to be effective to treat this condition. They provide information on suicide prevention and help to train supporters who can make all the difference to us, the victims. We NEED clusterbusters and you should support them too.

Raymond Schwartz Columbus Ohio

I met Chronic Cluster Headaches for the first time in 1985. I thought at the time I was dying and have now felt that way thousands of times. I have also felt like taking my own life to escape this horror more times then care to remember.
After losing the ability to work, the ability to think straight, the ability to even imagine a light at the end of this dark tunnel of pain I came across this group and for the first time found company, knowledge, hope and a very good reason to refuse to give up. I am here to write this today as a direct result of the efforts, time, research and caring compassion of the community that is "ClusterBusters".
I support several non-profits but no others that put their all into helping the helpless with no end to how far they will go to stick to their mission statement with nothing personal to gain, no hidden agendas and constant support to any and all who are hurting. I owe so much and can't even single anyone out to thank because they seek no credit for what they give.

Thank God for putting "ClusterBusters Inc." in my path!

There are many groups that do absolutely fantastic work and save many lives. Clusterbusters does that while also serving the communal need for psychological support and grassroots advocacy; all in the face of trying to overcome societal fears and possible legal issues. They welcome and provide comfort for many whose pain is misunderstood and very often, have nowhere else to turn.

amazing suppoert simply could not carry on without the support carry on the good work
richie uk

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.

The best money I ever donated was to clusterbusters they are truly lifesaving. The only clusterheadache non profit that represents me in Washington DC. The only one.