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Psiloscribe

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  1. Thanks
    Psiloscribe got a reaction from Brain on fire in Gammacore/electrocore   
    Just a few comments on the gammaCore device.

    As was mentioned by someone earlier in the thread, I think the first inclination on the device should be of the positives it brings. The cost is more a product of our broken and complicated medical system than of it's current cost.
    The Vagus nerve has long been discussed as it's potential involvement in cluster headaches. So it was a logical choice in research. The company did spend millions on this research and it has an important role to play in the overall need for more research into clusters and helping find another piece of the puzzle. Even research that eliminates possible routes to successful treatments and an eventual cure help paint the picture and help us all zero in on discovery.

    So, the most important part of this particular story, to me, is the basic research and someone, anyone, investing money into searching for something that helps us as a community that has for so long been completely ignored. The eventual effectiveness of this or any treatment is secondary. Of course we all would hope that this research finds is help but some things will be more of a help than others. Its most important that they keep searching, keep researching.

    The FDA approved this device because they understood that even of only 30% of the people using it were helped, that's 30% of an entire community that needs help. That's 30% of a community that can find a new option that helps that they didn't have before. I'm extremely happy for those 30%.

    It should also be important for the rest of us in that there are people looking for things that can help us. That alone should give hope to 100% of the community.

    Clusterbusters has been trying to help the community since 2002. In many cases its been helping people one at a time. That take s a lot of time and dedication from a lot of people. We appreciate anything that helps just one of us. This is a very close knit community and we know that helping just one person, helps the entire community.  When individuals or companies or even government agencies try to take advantage of the community and anyone in the community, we have and will take a stand and try to protect each of us. 

    We have been following this research for many years and we have heard many reports of people getting better results the longer they use this device. Yes we've also heard many stories where it was not helpful at all. Its a similar story for so many of the treatments we choose or have available. We will stay on this and follow up on its success and failures. With the cost being the biggest hurdle for people to try it, we will continue to fight to get insurance companies to cover its cost. 
    As everyone knows, Clusterbusters has always offered help and advice regarding things that people can't get a prescription for from their doctor. We also know that a large portion of our community relies upon staying within the rules and only using prescription medications and treatments. We fight just as hard for all of them and try to move the entire medical community forward to find help for all of us. People should be able to choose whatever treatment works best for them and they should be able to afford that treatment. As simple as that sounds, there are many barriers that we need to tear down.

    Peace out~
    Hope everyone has a great 2019
    Bob
     
  2. Thanks
    Psiloscribe got a reaction from Brain on fire in Saints & Miracles   
    Let' stay on topic shall we?
     
    Bob
  3. Like
    Psiloscribe got a reaction from Brain on fire in A little help from my friends   
    Group,
    I began advocating for cluster headache sufferers and their families in 1998. I have been trying to help others with clusters even before that online. It started when the only "message boards were known as Newsgroups in the early days of the internet.
    Clusterbusters officially formed in 2002 and we had a private message board on Yahoo that was invite only and the main object of our work was to work together and refine the psychedelic treatments. We did our science homework, contacted doctors and researchers and anyone with any information on how to improve the efficacy of psychedelic treatments and make sure that everyone was as safe as possible.
    Since that time we have made huge strides in not only the treatments but in many areas of support and advocacy work for everyone with clusters.
    We've been able to help thousands of people that for the most part, had exhausted all other options.
    My presentation called Psychedelics or Suicide was heartfelt and true. Many people have made that decision and have stepped back from the edge.
    We have changed legislation. We have gotten the first pharmaceutical company in history to run a phase three study on a promising new treatment.
    We have the top headache specialists in the world attending our conferences.
    We have many physicians sending their patients to Clusterbusters. We meet with congress and the FDA. We've helped train the National Suicide Hotline operators.
    We've completed research that showed the efficacy of LSD analogs like BOL-148
    We have done research on LSA
    We have research going on now at one of the top Institutions in the world regarding psilocybin and clusters.
    We have research starting in the next month on the genetics of clusters headaches.
    Most of this while overcoming 50 years of neglect and the impossibilities of researching schedule one drugs. Most of which we were told could not take place.
    When anyone is looking into research or new areas of treatments for cluster headaches, they come to Clusterbusters first.
    I could go on and on but let me just say that I doubt anyone could find another support organization that has and still relies entirely upon volunteers, that has accomplished more in this amount of time, for it's members.
    Members that don't even pay for a membership. We've never had paid memberships which could have helped pay for some of our work, because you need to offer something extra for paid members and we have always wanted to make sure that EVERYTHING was available to EVERYONE.
    We are an open source organization.
    We do not only help people that pay for the help.
    I write all of this for one reason.
    This message board has always been the most important part of what I have tried to accomplish and where all the hard work is done.
    This message board is responsible for saving lives and for all the accomplishments that have come along the way.
    I have entrusted this board to the administrators because they are some of the people I respect the most in the world. People that I know will protect the integrity and respectability that it deserves.
    I have poured a large portion of my life into not only this board but what this board represents.
    I would not entrust that to just anyone. Administrating a message board is not easy and it is a thankless job. To make a board like this successful and for it to last more than a couple of years is not an easy task. If not run correctly it can blow up and slip away.
    This board is more important than any one of it's members. It's existence needs to remain a place for someone that none of us currently know, to sign on when they are making that "psychedelics or suicide" decision.
    I understand that feelings get hurt. People have disagreements and have different ways of offering support. People need different types of support.
    We NEED people with differing opinions and we need people with strong personalities. This is not an easy topic to deal with. People aren't signing on here asking how often they need to water their rose bushes.
    All I ask is that everyone please respect the board, respect the administrators and respect each other.
    You all have an important role to play here. None of us can help everyone but together we can help more people than any one individual can.
    Clusterbusters has not been able to achieve all it has because of any one person. There are people here that have been helping others since 2002 and before.
    Every person that is helped is now helped because of all the work that has gone on for all these years and all the work that it has taken to keep this board open and the lifeline that it can be for people.
    The administrators of this board have done more work over the years than anyone here could imagine.
    Please, respect the board, respect the administrators and most importantly respect each other.
    Bob
  4. Like
    Psiloscribe got a reaction from Brain on fire in A little help from my friends   
    Group,
    I began advocating for cluster headache sufferers and their families in 1998. I have been trying to help others with clusters even before that online. It started when the only "message boards were known as Newsgroups in the early days of the internet.
    Clusterbusters officially formed in 2002 and we had a private message board on Yahoo that was invite only and the main object of our work was to work together and refine the psychedelic treatments. We did our science homework, contacted doctors and researchers and anyone with any information on how to improve the efficacy of psychedelic treatments and make sure that everyone was as safe as possible.
    Since that time we have made huge strides in not only the treatments but in many areas of support and advocacy work for everyone with clusters.
    We've been able to help thousands of people that for the most part, had exhausted all other options.
    My presentation called Psychedelics or Suicide was heartfelt and true. Many people have made that decision and have stepped back from the edge.
    We have changed legislation. We have gotten the first pharmaceutical company in history to run a phase three study on a promising new treatment.
    We have the top headache specialists in the world attending our conferences.
    We have many physicians sending their patients to Clusterbusters. We meet with congress and the FDA. We've helped train the National Suicide Hotline operators.
    We've completed research that showed the efficacy of LSD analogs like BOL-148
    We have done research on LSA
    We have research going on now at one of the top Institutions in the world regarding psilocybin and clusters.
    We have research starting in the next month on the genetics of clusters headaches.
    Most of this while overcoming 50 years of neglect and the impossibilities of researching schedule one drugs. Most of which we were told could not take place.
    When anyone is looking into research or new areas of treatments for cluster headaches, they come to Clusterbusters first.
    I could go on and on but let me just say that I doubt anyone could find another support organization that has and still relies entirely upon volunteers, that has accomplished more in this amount of time, for it's members.
    Members that don't even pay for a membership. We've never had paid memberships which could have helped pay for some of our work, because you need to offer something extra for paid members and we have always wanted to make sure that EVERYTHING was available to EVERYONE.
    We are an open source organization.
    We do not only help people that pay for the help.
    I write all of this for one reason.
    This message board has always been the most important part of what I have tried to accomplish and where all the hard work is done.
    This message board is responsible for saving lives and for all the accomplishments that have come along the way.
    I have entrusted this board to the administrators because they are some of the people I respect the most in the world. People that I know will protect the integrity and respectability that it deserves.
    I have poured a large portion of my life into not only this board but what this board represents.
    I would not entrust that to just anyone. Administrating a message board is not easy and it is a thankless job. To make a board like this successful and for it to last more than a couple of years is not an easy task. If not run correctly it can blow up and slip away.
    This board is more important than any one of it's members. It's existence needs to remain a place for someone that none of us currently know, to sign on when they are making that "psychedelics or suicide" decision.
    I understand that feelings get hurt. People have disagreements and have different ways of offering support. People need different types of support.
    We NEED people with differing opinions and we need people with strong personalities. This is not an easy topic to deal with. People aren't signing on here asking how often they need to water their rose bushes.
    All I ask is that everyone please respect the board, respect the administrators and respect each other.
    You all have an important role to play here. None of us can help everyone but together we can help more people than any one individual can.
    Clusterbusters has not been able to achieve all it has because of any one person. There are people here that have been helping others since 2002 and before.
    Every person that is helped is now helped because of all the work that has gone on for all these years and all the work that it has taken to keep this board open and the lifeline that it can be for people.
    The administrators of this board have done more work over the years than anyone here could imagine.
    Please, respect the board, respect the administrators and most importantly respect each other.
    Bob
  5. Like
    Psiloscribe got a reaction from Freud in Open letter to major chemical companies (BOL-148)   
    Hello Jack,
    I will answer in email so we can discuss the situation and moving it forward.

    To let everyone else in on what is currently happening, yes BOL-148 is again in the pipeline. What I learned long ago is that these pipelines run very slowly. It took psilocybin 17 years to get into a clinical trial.

    As someone stated above regarding the report at our last conference, the patents are now in the hands of a new drug development company and negotiations are underway getting study approvals and FDA requirements on the steps they will require. (You can't just go to phase 3 clinical studies). 

    Hope to have a better report on the status of BOL-148 at our conference coming up in Dallas in a few weeks.

    Bob Wold
     
  6. Like
    Psiloscribe got a reaction from Freud in Open letter to major chemical companies (BOL-148)   
    Hello Jack,
    I will answer in email so we can discuss the situation and moving it forward.

    To let everyone else in on what is currently happening, yes BOL-148 is again in the pipeline. What I learned long ago is that these pipelines run very slowly. It took psilocybin 17 years to get into a clinical trial.

    As someone stated above regarding the report at our last conference, the patents are now in the hands of a new drug development company and negotiations are underway getting study approvals and FDA requirements on the steps they will require. (You can't just go to phase 3 clinical studies). 

    Hope to have a better report on the status of BOL-148 at our conference coming up in Dallas in a few weeks.

    Bob Wold
     
  7. Like
    Psiloscribe got a reaction from CHfather in Emgality for episodic   
    It sounds like you've been prescribed the migraine dose of Emgality. The cluster dose is 300 mg and comes in (3) 100mg injections. Have your doctor check out the eli lilly website for info on prescribing instructions for clusters.
  8. Like
    Psiloscribe got a reaction from CHfather in Emgality for episodic   
    It sounds like you've been prescribed the migraine dose of Emgality. The cluster dose is 300 mg and comes in (3) 100mg injections. Have your doctor check out the eli lilly website for info on prescribing instructions for clusters.
  9. Like
    Psiloscribe got a reaction from CHfather in Emgality for episodic   
    It sounds like you've been prescribed the migraine dose of Emgality. The cluster dose is 300 mg and comes in (3) 100mg injections. Have your doctor check out the eli lilly website for info on prescribing instructions for clusters.
  10. Thanks
    Psiloscribe got a reaction from dmlonghorn in Teva Scraps Chronic Cluster Headache Study   
    Yes this was some disappointing news. The article is a year old and since then they have also stopped the study with episodics.

    Personally I believe that part of the issue was that they didn't learn about clusters or cluster patients nearly as well as Eli Lilly did and didn't design their study properly. They never engaged the cluster community.

    Bob
     
  11. Thanks
    Psiloscribe got a reaction from dmlonghorn in Teva Scraps Chronic Cluster Headache Study   
    Yes this was some disappointing news. The article is a year old and since then they have also stopped the study with episodics.

    Personally I believe that part of the issue was that they didn't learn about clusters or cluster patients nearly as well as Eli Lilly did and didn't design their study properly. They never engaged the cluster community.

    Bob
     
  12. Thanks
    Psiloscribe got a reaction from Brain on fire in Gammacore/electrocore   
    Just a few comments on the gammaCore device.

    As was mentioned by someone earlier in the thread, I think the first inclination on the device should be of the positives it brings. The cost is more a product of our broken and complicated medical system than of it's current cost.
    The Vagus nerve has long been discussed as it's potential involvement in cluster headaches. So it was a logical choice in research. The company did spend millions on this research and it has an important role to play in the overall need for more research into clusters and helping find another piece of the puzzle. Even research that eliminates possible routes to successful treatments and an eventual cure help paint the picture and help us all zero in on discovery.

    So, the most important part of this particular story, to me, is the basic research and someone, anyone, investing money into searching for something that helps us as a community that has for so long been completely ignored. The eventual effectiveness of this or any treatment is secondary. Of course we all would hope that this research finds is help but some things will be more of a help than others. Its most important that they keep searching, keep researching.

    The FDA approved this device because they understood that even of only 30% of the people using it were helped, that's 30% of an entire community that needs help. That's 30% of a community that can find a new option that helps that they didn't have before. I'm extremely happy for those 30%.

    It should also be important for the rest of us in that there are people looking for things that can help us. That alone should give hope to 100% of the community.

    Clusterbusters has been trying to help the community since 2002. In many cases its been helping people one at a time. That take s a lot of time and dedication from a lot of people. We appreciate anything that helps just one of us. This is a very close knit community and we know that helping just one person, helps the entire community.  When individuals or companies or even government agencies try to take advantage of the community and anyone in the community, we have and will take a stand and try to protect each of us. 

    We have been following this research for many years and we have heard many reports of people getting better results the longer they use this device. Yes we've also heard many stories where it was not helpful at all. Its a similar story for so many of the treatments we choose or have available. We will stay on this and follow up on its success and failures. With the cost being the biggest hurdle for people to try it, we will continue to fight to get insurance companies to cover its cost. 
    As everyone knows, Clusterbusters has always offered help and advice regarding things that people can't get a prescription for from their doctor. We also know that a large portion of our community relies upon staying within the rules and only using prescription medications and treatments. We fight just as hard for all of them and try to move the entire medical community forward to find help for all of us. People should be able to choose whatever treatment works best for them and they should be able to afford that treatment. As simple as that sounds, there are many barriers that we need to tear down.

    Peace out~
    Hope everyone has a great 2019
    Bob
     
  13. Like
    Psiloscribe got a reaction from Nope I’m Out in Patient Registry   
    Hello everyone!!
    Have you registered on the Clusterbusters “Patient Registry” yet?
    Over the years, Clusterbusters has built the largest worldwide patient database in the world. Become a member of the database and possibly a participant in a research project that will lead to better treatments and eventually a part of the cure.
    By completing this form, you are not registering for a specific study that is underway or that will start in the future. You are not agreeing to become a participant in anything. You are only agreeing to the possibility of being contacted in the future to ask for your participation.
    Research studies sometimes only require your participation from home. It may only require completing surveys or questionnaires. Some of you may have recently done this for the work underway at Yale University. Some clinical studies require your participation in other ways. Some may include travel. Each study has different requirements. Choice of participation is yours and that of the study investigators and does not involve Clusterbusters in any part of the process.
    This registry is open for everyone. There are no requirements of past, present or future choice of treatments or any particular cluster headache or human traits.
    People from all walks of life, all ages and every description, suffer from cluster headaches.
    We are presently involved in several ongoing research projects as well as several others that are in the long process of approval.
    As we are involved in research on an international basis, this survey is open to everyone worldwide. We encourage anyone with cluster headaches to respond and help inform others of its existence. As many studies focus on certain segments of the cluster population, episodics vs. chronics as an example, you may not be contacted for every study that is underway.
    Be a part of a better future for cluster headache patients and participate in our registry.
    As you will see again on the forms themselves, all of this information is and will remain completely private. The survey, all data and any and all future distribution is administered by the ClusterbusterÂ’s Administrative panel and members of its medical advisory board.
    Information and people will move the research forward. Please be a part of this. Just the completion of the questions on this short survey, by the thousands that are included, helps gather important information.
    Please share this with others you may know that suffer from clusters. If you know of anyone that does not have access to a computer, contact us at info@clusterbusters.org and we will mail a written copy for completion and inclusion.
    To participate, please go to this link:
    http://tinyurl.com/n9ou73a
    Some of the questions may give you an idea of some of the projects we are currently working on and there will also be more information available at this years conference.
    Even if you can't make the conference, we'd love to have everyone here on the registry.
    Thank you
    Bob Wold
    Clusterbusters
  14. Thanks
    Psiloscribe got a reaction from Brain on fire in Gammacore/electrocore   
    Just a few comments on the gammaCore device.

    As was mentioned by someone earlier in the thread, I think the first inclination on the device should be of the positives it brings. The cost is more a product of our broken and complicated medical system than of it's current cost.
    The Vagus nerve has long been discussed as it's potential involvement in cluster headaches. So it was a logical choice in research. The company did spend millions on this research and it has an important role to play in the overall need for more research into clusters and helping find another piece of the puzzle. Even research that eliminates possible routes to successful treatments and an eventual cure help paint the picture and help us all zero in on discovery.

    So, the most important part of this particular story, to me, is the basic research and someone, anyone, investing money into searching for something that helps us as a community that has for so long been completely ignored. The eventual effectiveness of this or any treatment is secondary. Of course we all would hope that this research finds is help but some things will be more of a help than others. Its most important that they keep searching, keep researching.

    The FDA approved this device because they understood that even of only 30% of the people using it were helped, that's 30% of an entire community that needs help. That's 30% of a community that can find a new option that helps that they didn't have before. I'm extremely happy for those 30%.

    It should also be important for the rest of us in that there are people looking for things that can help us. That alone should give hope to 100% of the community.

    Clusterbusters has been trying to help the community since 2002. In many cases its been helping people one at a time. That take s a lot of time and dedication from a lot of people. We appreciate anything that helps just one of us. This is a very close knit community and we know that helping just one person, helps the entire community.  When individuals or companies or even government agencies try to take advantage of the community and anyone in the community, we have and will take a stand and try to protect each of us. 

    We have been following this research for many years and we have heard many reports of people getting better results the longer they use this device. Yes we've also heard many stories where it was not helpful at all. Its a similar story for so many of the treatments we choose or have available. We will stay on this and follow up on its success and failures. With the cost being the biggest hurdle for people to try it, we will continue to fight to get insurance companies to cover its cost. 
    As everyone knows, Clusterbusters has always offered help and advice regarding things that people can't get a prescription for from their doctor. We also know that a large portion of our community relies upon staying within the rules and only using prescription medications and treatments. We fight just as hard for all of them and try to move the entire medical community forward to find help for all of us. People should be able to choose whatever treatment works best for them and they should be able to afford that treatment. As simple as that sounds, there are many barriers that we need to tear down.

    Peace out~
    Hope everyone has a great 2019
    Bob
     
  15. Thanks
    Psiloscribe got a reaction from Brain on fire in Gammacore/electrocore   
    Just a few comments on the gammaCore device.

    As was mentioned by someone earlier in the thread, I think the first inclination on the device should be of the positives it brings. The cost is more a product of our broken and complicated medical system than of it's current cost.
    The Vagus nerve has long been discussed as it's potential involvement in cluster headaches. So it was a logical choice in research. The company did spend millions on this research and it has an important role to play in the overall need for more research into clusters and helping find another piece of the puzzle. Even research that eliminates possible routes to successful treatments and an eventual cure help paint the picture and help us all zero in on discovery.

    So, the most important part of this particular story, to me, is the basic research and someone, anyone, investing money into searching for something that helps us as a community that has for so long been completely ignored. The eventual effectiveness of this or any treatment is secondary. Of course we all would hope that this research finds is help but some things will be more of a help than others. Its most important that they keep searching, keep researching.

    The FDA approved this device because they understood that even of only 30% of the people using it were helped, that's 30% of an entire community that needs help. That's 30% of a community that can find a new option that helps that they didn't have before. I'm extremely happy for those 30%.

    It should also be important for the rest of us in that there are people looking for things that can help us. That alone should give hope to 100% of the community.

    Clusterbusters has been trying to help the community since 2002. In many cases its been helping people one at a time. That take s a lot of time and dedication from a lot of people. We appreciate anything that helps just one of us. This is a very close knit community and we know that helping just one person, helps the entire community.  When individuals or companies or even government agencies try to take advantage of the community and anyone in the community, we have and will take a stand and try to protect each of us. 

    We have been following this research for many years and we have heard many reports of people getting better results the longer they use this device. Yes we've also heard many stories where it was not helpful at all. Its a similar story for so many of the treatments we choose or have available. We will stay on this and follow up on its success and failures. With the cost being the biggest hurdle for people to try it, we will continue to fight to get insurance companies to cover its cost. 
    As everyone knows, Clusterbusters has always offered help and advice regarding things that people can't get a prescription for from their doctor. We also know that a large portion of our community relies upon staying within the rules and only using prescription medications and treatments. We fight just as hard for all of them and try to move the entire medical community forward to find help for all of us. People should be able to choose whatever treatment works best for them and they should be able to afford that treatment. As simple as that sounds, there are many barriers that we need to tear down.

    Peace out~
    Hope everyone has a great 2019
    Bob
     
  16. Thanks
    Psiloscribe got a reaction from Brain on fire in Gammacore/electrocore   
    Just a few comments on the gammaCore device.

    As was mentioned by someone earlier in the thread, I think the first inclination on the device should be of the positives it brings. The cost is more a product of our broken and complicated medical system than of it's current cost.
    The Vagus nerve has long been discussed as it's potential involvement in cluster headaches. So it was a logical choice in research. The company did spend millions on this research and it has an important role to play in the overall need for more research into clusters and helping find another piece of the puzzle. Even research that eliminates possible routes to successful treatments and an eventual cure help paint the picture and help us all zero in on discovery.

    So, the most important part of this particular story, to me, is the basic research and someone, anyone, investing money into searching for something that helps us as a community that has for so long been completely ignored. The eventual effectiveness of this or any treatment is secondary. Of course we all would hope that this research finds is help but some things will be more of a help than others. Its most important that they keep searching, keep researching.

    The FDA approved this device because they understood that even of only 30% of the people using it were helped, that's 30% of an entire community that needs help. That's 30% of a community that can find a new option that helps that they didn't have before. I'm extremely happy for those 30%.

    It should also be important for the rest of us in that there are people looking for things that can help us. That alone should give hope to 100% of the community.

    Clusterbusters has been trying to help the community since 2002. In many cases its been helping people one at a time. That take s a lot of time and dedication from a lot of people. We appreciate anything that helps just one of us. This is a very close knit community and we know that helping just one person, helps the entire community.  When individuals or companies or even government agencies try to take advantage of the community and anyone in the community, we have and will take a stand and try to protect each of us. 

    We have been following this research for many years and we have heard many reports of people getting better results the longer they use this device. Yes we've also heard many stories where it was not helpful at all. Its a similar story for so many of the treatments we choose or have available. We will stay on this and follow up on its success and failures. With the cost being the biggest hurdle for people to try it, we will continue to fight to get insurance companies to cover its cost. 
    As everyone knows, Clusterbusters has always offered help and advice regarding things that people can't get a prescription for from their doctor. We also know that a large portion of our community relies upon staying within the rules and only using prescription medications and treatments. We fight just as hard for all of them and try to move the entire medical community forward to find help for all of us. People should be able to choose whatever treatment works best for them and they should be able to afford that treatment. As simple as that sounds, there are many barriers that we need to tear down.

    Peace out~
    Hope everyone has a great 2019
    Bob
     
  17. Thanks
    Psiloscribe got a reaction from Brain on fire in Gammacore/electrocore   
    Just a few comments on the gammaCore device.

    As was mentioned by someone earlier in the thread, I think the first inclination on the device should be of the positives it brings. The cost is more a product of our broken and complicated medical system than of it's current cost.
    The Vagus nerve has long been discussed as it's potential involvement in cluster headaches. So it was a logical choice in research. The company did spend millions on this research and it has an important role to play in the overall need for more research into clusters and helping find another piece of the puzzle. Even research that eliminates possible routes to successful treatments and an eventual cure help paint the picture and help us all zero in on discovery.

    So, the most important part of this particular story, to me, is the basic research and someone, anyone, investing money into searching for something that helps us as a community that has for so long been completely ignored. The eventual effectiveness of this or any treatment is secondary. Of course we all would hope that this research finds is help but some things will be more of a help than others. Its most important that they keep searching, keep researching.

    The FDA approved this device because they understood that even of only 30% of the people using it were helped, that's 30% of an entire community that needs help. That's 30% of a community that can find a new option that helps that they didn't have before. I'm extremely happy for those 30%.

    It should also be important for the rest of us in that there are people looking for things that can help us. That alone should give hope to 100% of the community.

    Clusterbusters has been trying to help the community since 2002. In many cases its been helping people one at a time. That take s a lot of time and dedication from a lot of people. We appreciate anything that helps just one of us. This is a very close knit community and we know that helping just one person, helps the entire community.  When individuals or companies or even government agencies try to take advantage of the community and anyone in the community, we have and will take a stand and try to protect each of us. 

    We have been following this research for many years and we have heard many reports of people getting better results the longer they use this device. Yes we've also heard many stories where it was not helpful at all. Its a similar story for so many of the treatments we choose or have available. We will stay on this and follow up on its success and failures. With the cost being the biggest hurdle for people to try it, we will continue to fight to get insurance companies to cover its cost. 
    As everyone knows, Clusterbusters has always offered help and advice regarding things that people can't get a prescription for from their doctor. We also know that a large portion of our community relies upon staying within the rules and only using prescription medications and treatments. We fight just as hard for all of them and try to move the entire medical community forward to find help for all of us. People should be able to choose whatever treatment works best for them and they should be able to afford that treatment. As simple as that sounds, there are many barriers that we need to tear down.

    Peace out~
    Hope everyone has a great 2019
    Bob
     
  18. Like
    Psiloscribe reacted to FunTimes in Trying to stay positive   
    That is great!!
    I am setting up to have a big cook out this weekend, My son told me he has my back if I can not make it through the day and get hit with a CH.
     
    The reason I and I would think most people visit this site is for just this.. A little reassurance goes a long way
    Thanks
  19. Like
    Psiloscribe got a reaction from Rod H in Trying to stay positive   
    FunTimes,
    That's a good answer Jon.
    I think we've all been there. It's more difficult for some and the range of difficulty changes for all of us as we move forward through life.
    It seems like when you get down, everything and everyone reminds us of why we're down or why things are going bad. When you're up and see a mountain, you see the beauty of it and when you're down, you remember when you were feeling good enough to climb it an can't any more.

    I think you need to find something that does bring you some joy and try to find ways of remembering that when you need it most. I used to put a little red avery sticker on my watch (when I wore a watch) to remind me to stop and breathe for a minute. Every time I looked at my watch, which was usually because I was running late and adding stress, it would remind me to stop for a minute.
    LOL, now I'm wondering if I stopped wearing a watch because I didn't have time for it any more LOL.

    Hang in there FunTimes, you'll have those times again.

    Bob
  20. Like
    Psiloscribe got a reaction from Rod H in Trying to stay positive   
    FunTimes,
    That's a good answer Jon.
    I think we've all been there. It's more difficult for some and the range of difficulty changes for all of us as we move forward through life.
    It seems like when you get down, everything and everyone reminds us of why we're down or why things are going bad. When you're up and see a mountain, you see the beauty of it and when you're down, you remember when you were feeling good enough to climb it an can't any more.

    I think you need to find something that does bring you some joy and try to find ways of remembering that when you need it most. I used to put a little red avery sticker on my watch (when I wore a watch) to remind me to stop and breathe for a minute. Every time I looked at my watch, which was usually because I was running late and adding stress, it would remind me to stop for a minute.
    LOL, now I'm wondering if I stopped wearing a watch because I didn't have time for it any more LOL.

    Hang in there FunTimes, you'll have those times again.

    Bob
  21. Like
    Psiloscribe got a reaction from godsjoy777 in Lilly & CGRP   
    Sorry, I'd edit the formatting but can't seem to be able to do that.


  22. Like
    Psiloscribe got a reaction from Rod H in Lilly & CGRP   
    Here is some pretty big news. https://investor.lilly.com/news-releases/news-release-details/lillys-galcanezumab-meets-primary-endpoint-phase-3-study Cluster Headache Lilly's Galcanezumab Meets Primary Endpoint in Phase 3 Study Evaluating Galcanezumab for the Prevention of Episodic Cluster Headache 05/15/2018 INDIANAPOLIS, May 15, 2018 /PRNewswire/ -- Eli Lilly and Company (NYSE: LLY) announced today that galcanezumab met its primary endpoint in a Phase 3 study of patients with episodic cluster headache, demonstrating statistically significant differences in the reduction of weekly cluster headache attacks compared to placebo across weeks one to three of the two-month, double-blind treatment period. A statistically significantly greater percentage of patients treated with galcanezumab also achieved at least a 50 percent reduction in weekly cluster headache attacks compared to placebo at Week 3, the gated secondary endpoint. My statement: "It is hard to articulate the devastating impact that cluster headache can have on those of us living with the disease. Many people living with cluster headache spend years searching for effective treatment options to help ease an excruciating level of pain," said Bob Wold, a patient living with cluster headache and founder of Clusterbusters, Inc. "We are very excited by these results and galcanezumab's potential as a new treatment option for people living with cluster headache, many of whom have spent years feeling ignored and alone in their struggle."
  23. Like
    Psiloscribe got a reaction from Rod H in Lilly & CGRP   
    Here is some pretty big news. https://investor.lilly.com/news-releases/news-release-details/lillys-galcanezumab-meets-primary-endpoint-phase-3-study Cluster Headache Lilly's Galcanezumab Meets Primary Endpoint in Phase 3 Study Evaluating Galcanezumab for the Prevention of Episodic Cluster Headache 05/15/2018 INDIANAPOLIS, May 15, 2018 /PRNewswire/ -- Eli Lilly and Company (NYSE: LLY) announced today that galcanezumab met its primary endpoint in a Phase 3 study of patients with episodic cluster headache, demonstrating statistically significant differences in the reduction of weekly cluster headache attacks compared to placebo across weeks one to three of the two-month, double-blind treatment period. A statistically significantly greater percentage of patients treated with galcanezumab also achieved at least a 50 percent reduction in weekly cluster headache attacks compared to placebo at Week 3, the gated secondary endpoint. My statement: "It is hard to articulate the devastating impact that cluster headache can have on those of us living with the disease. Many people living with cluster headache spend years searching for effective treatment options to help ease an excruciating level of pain," said Bob Wold, a patient living with cluster headache and founder of Clusterbusters, Inc. "We are very excited by these results and galcanezumab's potential as a new treatment option for people living with cluster headache, many of whom have spent years feeling ignored and alone in their struggle."
  24. Like
    Psiloscribe got a reaction from Nope I’m Out in Patient Registry   
    Hello everyone!!
    Have you registered on the Clusterbusters “Patient Registry” yet?
    Over the years, Clusterbusters has built the largest worldwide patient database in the world. Become a member of the database and possibly a participant in a research project that will lead to better treatments and eventually a part of the cure.
    By completing this form, you are not registering for a specific study that is underway or that will start in the future. You are not agreeing to become a participant in anything. You are only agreeing to the possibility of being contacted in the future to ask for your participation.
    Research studies sometimes only require your participation from home. It may only require completing surveys or questionnaires. Some of you may have recently done this for the work underway at Yale University. Some clinical studies require your participation in other ways. Some may include travel. Each study has different requirements. Choice of participation is yours and that of the study investigators and does not involve Clusterbusters in any part of the process.
    This registry is open for everyone. There are no requirements of past, present or future choice of treatments or any particular cluster headache or human traits.
    People from all walks of life, all ages and every description, suffer from cluster headaches.
    We are presently involved in several ongoing research projects as well as several others that are in the long process of approval.
    As we are involved in research on an international basis, this survey is open to everyone worldwide. We encourage anyone with cluster headaches to respond and help inform others of its existence. As many studies focus on certain segments of the cluster population, episodics vs. chronics as an example, you may not be contacted for every study that is underway.
    Be a part of a better future for cluster headache patients and participate in our registry.
    As you will see again on the forms themselves, all of this information is and will remain completely private. The survey, all data and any and all future distribution is administered by the ClusterbusterÂ’s Administrative panel and members of its medical advisory board.
    Information and people will move the research forward. Please be a part of this. Just the completion of the questions on this short survey, by the thousands that are included, helps gather important information.
    Please share this with others you may know that suffer from clusters. If you know of anyone that does not have access to a computer, contact us at info@clusterbusters.org and we will mail a written copy for completion and inclusion.
    To participate, please go to this link:
    http://tinyurl.com/n9ou73a
    Some of the questions may give you an idea of some of the projects we are currently working on and there will also be more information available at this years conference.
    Even if you can't make the conference, we'd love to have everyone here on the registry.
    Thank you
    Bob Wold
    Clusterbusters
  25. Like
    Psiloscribe got a reaction from krisd71 in 2017 Conference Review (Chicago)   
    This is our group photo. A conference report will follow soon. Please feel free to give us your personal review of your experience if you attended. We'd love to know about your experience. 


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