Clusterbusters Inc

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!!!!

Cluster busters seriously changed my life. I really don't know if I would be here without them.

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

The Clusterbusters saved me from a world of pain. Founder Bob Wold has been tireless in helping sufferers for decades, while battling this debilitatingly painful affliction himself. The group he founded, and the volunteers he inspired, have researched and promoted treatments, recruited top physicians, educated healthcare professionals, supported sufferers and their caregivers, and increased awareness among the general public.

Clusterbusters changed my life for the better. This was because I attended my first Clusterbusters conference in 2017 and for the first time in 50 years of living with chronic cluster headache, I got to speak freely with people also living with this disease that affects less than one in 1000. They provide excellent speakers and demonstrations at their yearly conference and respect your privacy and treat each attendee with honor and compassion. They have several doctors attend and present at each conference. I learned more about cluster headaches at the past three years of conferences that I had learned in my entire life. Thank to the oxygen demonstration at a CB conference, I was able to beta script for high flow oxygen which has helped me lived with chronic cluster headache. I have also made life long friends and advocates through this organization. They are passionate about helping those afflicted with cluster headache have a better life and better understand their disease. Amazingly they hold a yearly conference with over two hundred attendees and every attendees life is enriched as a result.

I was diagnosed with Chronic Cluster Headaches a couple years ago and was told about this group. I was lost without them, but they have given me so much support through education and just walking alongside me. They support research, educate and support those of us with this pain disease. I appreciate everything they do!

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

After 10 years dealing with the pharmaceutical merry go round , nothing of which worked ,my wife read an article of a group going to D.C. For headache on the hill. I was in high cycle at the time , 12-18 hits a day and knew nothing about 02.
I immediately refused , but of course she signed us up. On the 5 hr trip to D.C. , anxiety was high , I was terrified to discuss my condition with strangers.
As we walked to the hotel entrance a group of 8-10 people were outside. I walked over and was greeted with handshakes and hugs , WTF , these people don't even know us .
Little did I know then that the first people I met are the pillars of the cluster headache community , Bob Wold , Cindy Reynolds , Lee Markins and Bill Mingus .
That decision by my wife made saved my life ! After 34 years she is my rock and I love her dearly !
Clusterbusters saved my life , and is continuing to save lives and research treatments for this horrific condition.

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.

I was a refractory chronic clusterhead for over a decade. I was able to function albeit in agony several times a day. During that time I had been following the organization and participated in online community support but had not attended a conference. This organization saved my life truly giving further support that was needed along with information that helped bring me to a managed state.
For the past 3 years I have gone from 6-8 attacks daily during peak periods and 2-3 during low periods to averaging 1 bad attack per month. This wouldn’t have happened with out CB!! In addition my other headache types have been manageable. An amazing bonus!!
Their work in the community is astounding. Bringing forth not only citizen science but has opened the eyes to pharmaceutical companies the need for having treatments just for us and has done tremendous work advocating on Capitol Hill.
Our community of “sufferers” is truly blessed.

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 visit the Clusterbusters forum just about every day. My son suffers from this insidious disease. Cluster headache has got to be one of the worst conditions a person can have. Most people are unaware of how devastating cluster headaches really are. We need to raise awareness. I am grateful to have found the Clusterbusters website. Although my heart aches for the poor sufferers it is good to know that I am not alone as a person who is affected by this condition. There is a lot of useful information and even hope that something others have tried may work for us also.

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.

Clusterbusters literally saved my son's life and my sanity!! Best group of people I've ever met from the Top of to the bottom! Non-judgmental, scientific, reliable help and support!!!!!

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.