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.
I donate monthly to this cause because the people are truly amazing. They are helping a very small number of the population that suffers from the most painful disorder known, Cluster Headaches. Their goal is to raise awareness and help those with this affliction get diagnosed earlier, and get more effective treatment options. From advocating with our federal government to get more funding for research (there is no current successful treatment), to educating ER physicians on most effective ways to help someone during an attack, and suicide hotline operators on the potential fatal ramifications of this disease (nicknamed "suicide headache" because of the helplessness this disease can cause). This non profit is helping this patient group in so many ways. I am a "supporter" not a "sufferer" as my son has the chronic version of this disease for 9 years now. Clusterbusters has been by my side, holding my hand--and his, since the very beginning. This non profit is run and staffed by people who know because they suffer too.
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.
Clusterbusters saved my life, gives me hope and a reason to keep fighting. The best thing to happen to me since diagnosis was getting involved with CB. Every ch patient should know of Cluster Busters!
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
I owe my life to Clusterbusters.
The dedication of the President and board of directors is absolutely amazing.
The support, guidance and friendship I have received is wonderful .
Thank you will never be enough !
Clusterbusters saved my life !
I know people use the term " saved my life " quite loosely , but I mean it in the truest sense of the words.
I have had Episodic Cluster Headaches since 1985. I tried every pharma medication, every hospital out- patient and in - patient treatment, I tried a whole list of holistic therapies ... acupuncture, acupressure, kinesiology, water therapy, gem therapy, cupping, Chinese herbal remedies etc.
I was living like a hermit. All aspects of my life were affected. My marriage, my children, my family, my profession, my sanity ! I was afraid to leave the house, afraid to sleep, my Dr dreaded my visits.
I was suicidal, I had become a husk of the woman I once was.
I was introduced to Bob Wold and Clusterbusters about 15 years ago. They took me under their wing, they shared with me the way they treat their CH., they encouraged me to be strong, and gave me unconditional support on my journey to managing my CH.
I haven never looked back and I now enjoy life to the full !
Not only have CB given me my life back, they have lifted the spirits of my family and friends who watched me decline both physically and mentally.
Now, my life is like it should be. My pain is managed, my relationships with family and friends is strong, I am fulfilling my love of travel, I'm running a successful small business , I am socialising ( a lot ! ) .... life is wonderful !
I have met some amazing people through CB. They are fabulously strong people , they are very dear friends.
Words will never be enough to convey my heartfelt gratitude for the unconditional love and support I have been shown.
I am an incredibly proud patient advocate and I have travelled to USA from Scotland every September since 2015 to attend the Clusterbusters annual conference. A wonderful way to keep yourself educated ! The camaraderie is the best feeling in the world !
My gratitude is immeasurable !
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.
Saving lives every day !
The only cluster headache non profit raising awareness and helping people deal with 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!
A truly great organization that is helping so many people battling the devastating illness that is cluster headaches. The information, education and support provided by Clusterbusters is saving lives. There is no other place anywhere with this kind of information that so many have used with such great success. I just can't rate this organization high enough. Keep up the great work!
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 has served the cluster headache community all over the world. They are involved in research, education and advocacy for those who suffer from "suicide headaches" which is often described as the worst pain known to man. Our relatively small patient group need Clusterbusters in order to live normal lives. Thank you, Clusterbusters, for giving me my life back.
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.
Every year the organization gathers for conferences that are comprised of the leading neurologists, advocates, researchers, pharmaceutical companies, and patients. This is the largest and most effective patient advocacy group that is literally saving lives. While many groups offer good wholesome therapy, this organization's drive to not only lift people up out of the depths of chronic pain hello I that of functioning, thriving, pain free individuals is beyond praiseworthy.
Aligning themselves with other organization's to advocate not only for our condition but for other related disorders puts it on another level of nobility.
It has and continues to be a life saver
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.
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!!
This organization is life saving for so many. Totally dedicated to advocacy, research and education.
The difference it has made in CH sufferers lives is unmatched.
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.
This organization pioneered Cluster Headache patient representation! Thank you Clusterbusters.
There are so many areas of coverage, including lobbying for research dollars in DC, patient to patient support forums, grant giving, hosting incredible, annual conferences (which just keep getting better & better), partnering with volunteers staffing the call rooms of suicide prevention hotlines (saving lives!) and much, much more. This organization represents the cluster headache patient community with such professionalism and care, it's been life altering for thousands of families.
Clusterbusters nonprofit has a simple yet heroic mission: Amplify the historically muffled voice of cluster headache patients worldwide. Founded in 2002, Clusterbusters reached out to the medical community, researchers and whomever would listen! They now take teams (for 2 yrs and counting) to Congress! Amazing what this nonprofit has done for me and my family. Chronic cluster headaches nearly destroyed my life. I now have it back because of this wonderful organization. Below, is the statement on their website that I love the most......the pain of cluster headache is repudiated to be the worst pain known to mankind.
Through research, education and advocacy we hope to dramatically reduce the nearly 4 year time span in getting a proper diagnosis to get people on an effective treatment plan as soon as possible.
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.
I have suffered for 12 years and have been participating in ClusterBuster events for over 5 and every year gets better and bigger. And there's a reason. The people that make this organization tick are the most genuine, kindhearted, and loving people you'll ever meet. They have literally saved my life along with many others. I can't wait to see the things we achieve!
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.
After spending over 25 years suffering with Cluster Headache with no medical help at all, nor with any support from anyone who even knew what my malady was I finally have found hope. The compassion as well as the dedication to finding a cure, and on the way to a cure, a remedy, is the hallmark of this organization. My life has been made much the richer for finding them.
It is impossible to calculate how many have sought relief from the pain of CH through suicide before this organization came on the scene, and I might have been one of them had i not found hope. I know I have lost 12 friends in the last 10 years, but hopefully with the help of Clusterbusters we will be able to erase the nickname of "Suicide Headaches" from Cluster Headaches, and we will be able to give people their lives, livelihoods, and families back.
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 has become an essential group for the advocacy and education for and about cluster headaches. The organization serves the entire community of those with this painful ailment. It is an organization that impacts peoples lives at many levels, up to and including saving the lives of many who are ready to give up.
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.
My father has suffered with Cluster Headaches for 17 years and I have become his primary care taker over the past 2 years. ClusterBusters and Mr. Bob Wold have saved my dads life. I will forever dedicate my life to do my part in helping. Mr. Bob Wold has stuck by my side not to mention thousands of others. He stood up and created ClusterBusters that brought a LIGHT and RAY of HOPE to my dad and I and thousands of people around the world. Thank You
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.
A TOP NOTCH NON-PROFIT! Before I found Clusterbusters I felt hopeless after spending several years bouncing from one doctor to the next trying countless ineffective medications in search of pain relief from cluster headaches. It's because of their educational website and the peer support I received on their message board that I've finally been able to manage my chronic cluster headaches, return to full time employment, and very importantly ENJOY LIFE once again. Clusterbusters compassionate volunteers are dedicated to helping individuals with cluster headaches find pain relief as they actively pursue the medical community to research and find a cure for this debilitating disorder. I'm so thankful to Clusterbusters for all they have done for me and my family!
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!!!
With out this group I have no idea where my husband and i would be! My husband suffers from Chronic Cluster Headaches and the support from this group along with Advocating in Washington DC with them and research they are involved in they truly remarkable people! Also a Nonprofit so if at any time you want to donate this group truly using the money for research, education and support!.......!!!! ClusterBusters gave us hope again and continue every day to help people!
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.
As a chronic sufferer of cluster headaches, aka suicide headaches, this nonprofit has literally saved my life. I am so grateful that I have volunteered at different levels for this organization for over seven years, and it's still not enough. How can it ever be enough when you owe your life to someone? Clusterbusters changed me from a state of hopelessness to one of optimism and gratitude. I advocate not only for myself, but for many others as well which imbibes me with a sense of satisfaction and accomplishment that few will ever know.
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.