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Everything posted by Psiloscribe

  1. 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
  2. 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
  3. 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
  4. 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
  5. Yes I will get some info posted here as soon as possible. Good to hear from you Mox, Bob
  6. 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
  7. 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
  8. 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
  9. 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
  10. 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
  11. 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.
  12. 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
  13. Thank you all for keeping an eye on things. Bob
  14. 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. 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
  16. If you are thinking about attending the Clusterbuster Cluster Headache Conference in Denver, you only have a couple weeks before it gets underway. https://clusterbusters.org/event/13th-annual-clusterbusters-patient-conference/
  17. 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
  18. Aimovig has just been approved for migraines so far. It was only tested on migraine patients. The "equivalent" CGRP being studied by Eli Lilly reported pretty good results in their study for episodic clusters. It didn't meet the success goals for chronics although that doesn't mean it can't help people with clusters. It may be more difficult to get your insurance company to cover it for chronic clusters. If you can get your doctor to write a prescription and go thru the Amgen/Novartis program to get the free injections, I think its a great opportunity. We'll see what type of programs Lilly comes up with once their medication is available. There is a lot of negotiating still to take place as far as insurance companies approving or not, discount programs offered by each manufacturer and pricing. https://investor.lilly.com/news-releases/news-release-details/lillys-galcanezumab-meets-primary-endpoint-phase-3-study The initial pricing set by Amgen is pretty damn reasonable if you ask people involved in this sort of thing. The original pricing schedules looked like they might fall into the 10,000 - 15,000.00 per year range. As Denny quoted, its set at $6900.00 a year. If you compare that to what many of the other migraine/cluster meds cost, and how many this one treatment may be able to eliminate, (DHE nasal spray was retailing between $3300.00 and $5000.00 A MONTH) the insurance companies can actually save a bundle of money and more importantly, these meds can eliminate a lot of pain and suffering. It took a lot of patient advocacy to get the pricing down to where it ended up. This pricing should keep the CGRPs off the highest tiers on insurance formularies. This will make it much easier to get approved. The safety panel so far looks very good. Thousands of people have been on these meds for quite a while and the most often reported side effect was injection site soreness. BUT, it will take a lot more data retrieval over several years to make sure there are no long term effects. There hasn't been any testing yet regarding pregnancy and CGRPs so its recommended that women that are pregnant or thinking of becoming pregnant should not use the CGRPs at this time.
  19. Sorry, I'd edit the formatting but can't seem to be able to do that.
  20. 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."
  21. Clusterbusters could use some input on an important topic. This is with regard to doctor-patient relationships. Most of us have had a lot of these over the years. I'd like a concise answer to the following questions. 10-12 words or less please. Meaning, get to the point ;-) 1. What is the most important factor to you for a good doctor-patient relationship? i.e. Must have lolli-pops in waiting room. or Understands the science behind cluster headaches. or ? 2. Why did you leave your last doctor, looking for someone new, based upon this relationship? (not because of insurance, etc) i.e. Ran out of lolli-pops. or Would not work with me. or ? We will be doing a more detailed and formal survey as a follow up but this initial data will help us with an upcoming event as well as helping to design the next survey. P.S. This is important for the community. Thanks, Bob
  22. 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.
  23. Great to see you back jeebs Its good to keep family together. Regards, Bob
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