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Psiloscribe last won the day on December 3 2019

Psiloscribe had the most liked content!

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About Psiloscribe

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  1. Psiloscribe

    SUNCT or SUNA survey

    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
  2. Psiloscribe

    Saints & Miracles

    Let' stay on topic shall we? Bob
  3. Psiloscribe

    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
  4. Psiloscribe

    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.
  5. Psiloscribe

    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
  6. Psiloscribe

    Patient Registry

    Thank you all for keeping an eye on things. Bob
  7. Psiloscribe


    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
  8. Psiloscribe

    Focus Group?

    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
  9. 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/
  10. Psiloscribe

    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
  11. Psiloscribe

    Aimovig (erenumab)

    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.
  12. Psiloscribe

    Lilly & CGRP

    Sorry, I'd edit the formatting but can't seem to be able to do that.
  13. Psiloscribe

    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."
  14. Psiloscribe

    Doctor-Patient Relationships

    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
  15. 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.