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Clusterbusters Inc

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Nonprofit Overview

Causes: Health

Mission: -

Community Stories

104 Stories from Volunteers, Donors & Supporters

4 bob.bowling1849

Volunteer

Rating: 5

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.

Previous Stories
10

Volunteer

Rating: 5

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.

3 Kirt K.

Client Served

Rating: 5

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

4

Volunteer

Rating: 5

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.

2 Kim_133

Client Served

Rating: 5

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

2 ArleneHolt

General Member of the Public

Rating: 5

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

2 Erja S.

Client Served

Rating: 5

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

3

Client Served

Rating: 5

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.

3 Ashlie E.

General Member of the Public

Rating: 5

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

2

General Member of the Public

Rating: 5

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

1

Donor

Rating: 5

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!

2 Curt S.

Client Served

Rating: 5

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.

1 Richie C.

Volunteer

Rating: 5

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

1

General Member of the Public

Rating: 4

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

1 Rob_27

Client Served

Rating: 5

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.

3 Nataway

Volunteer

Rating: 5

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






1 Gillian F.

Client Served

Rating: 5

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.

1 Jenny57

Client Served

Rating: 5

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.

2 Victoria32

Client Served

Rating: 5

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.

2

General Member of the Public

Rating: 5

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

2

Client Served

Rating: 5

As a chronic Cluster Headache sufferer for over 14 years, I cannot begin to explain the value of this organization.