Psiloscribe

Thanks MaxHead for posting the article. Yeah it turned out pretty good. It was great that the author interviewed and quoted a lot of good qualified people like Dr. Schindler that gave the treatments and clusters in general, the respect they deserve. The author is a Pulitzer Prize winning author so she carries quite a bit of weight and the article is getting a lot of attention for clusters. Thanks for everyone here that has helped keep these fires burning all these years. Its been a team effort. Way to go team ;-) Bob

I am working with a doctor from Johns Hopkins on a TV show regarding pain. He is looking for someone that is currently in cycle and possibly willing to be filmed during an attack. It would be a brief clip and details on how to get it filmed can be discussed. It could most likely be done on your phone. If anyone is interested, please send an email to me at info@clusterbusters.org and I can share more details. Bob Wold

This year's Headache on the Hill event that is put on by AHDA (Alliance for Headache Disorders Advocacy) is being held in March (22-23) and will be virtual like everything else these days. The deadline for registering is coming up this Friday. There is a $50.00 registration fee this year due to the high costs of the company organizing the complicated process of scheduling hundreds of meetings with Senate and House offices. Anyone from the cluster community will have their registration fees covered by Clusterbusters upon request. If you live in any of these states, we really need you. You're welcome and wanted from any of the 50 states but really need help filling the rest of the states. We hope to have an answer from CMS regarding the oxygen issue by February. If we get a positive response, we'll be able to thank all the representatives that helped us achieve this milestone. If we get another no, we'll be able to voice our displeasure at our mistreatment. We will also be bringing new demands for improved treatment of people with headache disorders. States with 0 applicants: AK, AR, SD, WY States with only 1 applicant: ID, KS, KY, ME, MO, MT, NE, NM, NV, OK, OR, RI, WV This is the application: Application for the 2021, 14th Annual Headache on the Hill (google.com) I hope everyone in our community is doing ok. These are difficult times for everyone. If you need some support, please reach out. We all love and respect our community and fellow clusterheads. Soon we will all be able to get together again in person and show the strength of our community holding each other and getting through life together. Bob Wold

Pulling this old topic out of the closet. It's a good topic for discussion. There is plenty of research showing how histamine can play a role in cluster headaches. The Diamond Headache Clinic has for decades used a histamine desensitivevation (sp) program in their in-patient unit. It's a long process but many people have had good results in breaking cycles this way. (as well as plenty of failures along the way) Many of us prior to getting a proper diagnosis rely upon OTC antihistamines that do provide some relief. You end up needing more and more. In todays world, I'd probably be investigated for having a meth lab with all the OTC antihistamines I used for my clusters. ( the first 4 years i had a "sinus infection") Anyway, I was sent this recent article about histamines that I thought someone may find helpful. (Ignore the ads for wine ;-) https://drinkpurewine.com/blogs/histamine-intolerance-side-effects/histamine-intolerance I hope everyone is having a great fall, at least weather-wise if not other areas of life. Hang in there people, Bob

Yes I will get some info posted here as soon as possible. Good to hear from you Mox, Bob

During this time of distancing, we'd like to offer more to keep us together. Beginning next week and continuing based on demand, please join us on Zoom for one hour support group discussions moderated by Mr. Bob Wold. You will need to sign up here and we will send you a link. Please do not forget to include your email. https://www.signupgenius.com/go/9040b49a8ac23a4ff2-clusterbusters I know this is a rough time for everyone and it's even tougher for those of us that had serious health issues before the lockdown's made things even harder. There has been a noticeable spike in people talking about giving up and a spike in people entering serious cluster cycles that weren't expected. Some of this may be attributed to this crazy weather. Some may be from the added stress and anxiety of these times we live in. If you have zoom set up (or want to set it up) and want to chat with others with clusters, and see some faces, let's talk. Bob

Links, yes, very sorry. This is the link to the prescribing document. https://drive.google.com/file/d/1Z6tUblQVzzQPPYCOXu_Abn2UqoMZ-rFO/view This is the link to our page with a lot of additional oxygen informetion that can help doctors and insurance companies. https://clusterbusters.org/resource/helpful-documents-for-printing/ Bob

Good morning, A few days ago, CMS relaxed many regulations for COVID crisis, including one related to oxygen. http://go.cms.gov/3aDAFFq National Coverage Determinations (NCDs) and Local Coverage Determinations (LCDs) on Respiratory Related Devices, Oxygen and Oxygen Equipment, Home Infusion Pumps and Home Anticoagulation Therapy: Clinicians now have maximum flexibility in determining patient needs for respiratory related devices and equipment and the flexibility for more patients to manage their treatments at the home. The current NCDs and LCDs that restrict coverage of these devices and services to patients with certain clinical characteristics do not apply during the public health emergency. For example, Medicare will cover non-invasive ventilators, respiratory assist devices and continuous positive airway pressure devices based on the clinician’s assessment of the patient. This is the NCD that we have been fighting against for the past 10 years. This means that we have a window of opportunity to obtain oxygen for cluster headache through Medicare. It was previously not covered by that insurance. We hope that once patients obtain this necessary and life-saving treatment for their cluster headaches, it will not be taken back once the current pandemic crisis is over. Regardless, we believe that a few months with oxygen is better than none. If you have medicare, we are urging you to reach out to your doctor for a prescription today! Even if you are not in cycle now, it will be good to prepare for your next one. The more people who use this unique window of opportunity, the better. Here is prescribing information you can pass on to your doctor if they are unfamiliar with the required high flow rate (at least 12-15lpm) and the protocol needed for cluster headache treatment. There are also other resources and studies here if your doctor would like more information. Also, if you have private insurance or medicaid and have been refused coverage for oxygen in the past, and the CMS determination was sited as a basis for their denial, perhaps it is a good time to try again. You can use the CMS information above if you should need to appeal or justify your request. Even if they haven’t given a reason for denial, it might be a good time to try again. If you are comfortable, please drop us a note at info@clusterbusters.org and let us know your success or failure with this so that we can attempt to track efforts. We are hopeful that this decades-long battle to obtain oxygen for some of the most vulnerable in our population is at an end. It seems a terrible thing that we have to take advantage of this global tragedy, but we also know that clusterheads have been living for far too long with inadequate treatment. We have been ignored and we have lost many along the way due to this ignorance and fear. Our hearts go out to those who have suffered or lost their lives due to Covid-19 as they go out to those suffering with cluster headache, especially during this difficult time. This is the link to the oxygen tri-fold document that is helpful with prescribing information https://drive.google.com/file/d/1Z6tUblQVzzQPPYCOXu_Abn2UqoMZ-rFO/view This link will take you to additional oxygen information: https://clusterbusters.org/resource/helpful-documents-for-printing/ As always, if you have any comments or questions, please feel free to reach out. Sincerely, Eileen Brewer President Clusterbusters

Hello Clusterbusters has started a new survey for people that have been diagnosed with either SUNCT or SUNA These TAC's are very similar to clusters but are very short in duration, such as seconds or a couple minutes long, and having many attacks per day. The number of attacks can go up to having more than 100 attacks. If you have been diagnosed with either SUNCT or SUNA please complete our new survey. We will be using the data we collect in this survey for new research projects. This will likely be the largest collection of data for these conditions and will be very valuable in future research projects. The survey can be found here: http://survey.constantcontact.com/survey/a07egywvpzdk7qkcw90/start Thank you all, Bob Wold

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

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.

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

Thank you all for keeping an eye on things. Bob

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

Hello all, I hope you're all having a great holiday season. I am looking for several people that are interested in taking part in a focus group regarding cluster headaches. Specifically we're needing people that have been diagnosed within the last 5 years. Even if you've had clusters for longer, the diagnosis should have been in the last 5 years. I know many of us go years before proper diagnosis. This is one of the issues that will be discussed. Participation will require attending a couple of long conference calls (3-4 hours long) FYI: This project is being sponsored by Eli Lilly who is coming out soon with a new medication that will hopefully be helping a lot of people soon. We are looking for a mix of episodics/chronics, male/female If you might be interested, send me a message here or write an email to me at bob@clusterbusters.org and I can give you more information. Thanks again, Merry Christmas and Happy New Year! Bob Wold