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Showing content with the highest reputation since 01/24/2021 in Posts

  1. Heading back up for another round with this study. https://clinicaltrials.gov/ct2/show/NCT02981173 Might not help me much but it will make things a little better for the future.
    5 points
  2. Thank you all for your kind support and advice. Anxiety is a rocky ride with good days and dreadful days. Yesterday was not a good day for me. Just got to keep fighting. We're all fighting something.
    5 points
  3. Great reply's to a provocative article. Its reports like these taken out of context that provide inane arguments from reimbursement decision makers and scare off those who would potentially benefit from Oxygen to treat a cluster attack. I have attached the original article which is "Hyperoxic Brain Effects Are Normalized by Addition of CO2". The OP placed a link from a PR arm of UCLA (self promotion) to bring our attention and concern. The PR department took great liberties with the content going so far as to state the info in being incorporated tin Europe to modify resuscitati
    4 points
  4. Just wanted to say Thank You for everyone here. Last February 6th I started the roughest cycle I had ever been through in 17 years of dealing with Clusters and everyone here was nice enough to help me get through it. My mind did wander to some bad places during that cycle and it no longer does as the wisdom of this group brought me to the right place. Thank You for all you do.
    4 points
  5. Good day all Just an update. It's been well over 3 or 4 weeks into the D3 regimine. From 9 or 10 attacks to 0 per night. I feel great. Just having a full night sleep after so long is heavenly. I must say that this is a breath of new air into my life and I found purpose to live again. Too late for regrets now as this could have saved both my hips and needle through me face and other painful procedures I put myself through out of haste and frustration. However, I see only positive things coming my way and there are basically no words to express my gratitude to tho
    4 points
  6. To be blunt, the couple of 'absolutes' I have seen in this thread are a bit disheartening. With just a quick search 02 is effective at total or partial aborts for 70-80% of patients, there are still patients, such as me, who get little to no relief from any flow rate of 100% o2. As for imitrex, it was 100% effective for me, for about 6 months, then I began getting 1 in 4 times that it failed to do anything, up to a point when it was about 2-3 in 4 that failed to work, so with the associated cost, other considerations I stopped using them. I am a refractory chronic ch sufferer with 5+ atta
    4 points
  7. I hope everyone is noticing that we are discussing two different companies- MindMed and MindMend. Looks like MindMend is just trying to be the next wave of dispensaries, not research.
    3 points
  8. Volunteering for a study like this is, knowing you may receive a placebo and be subject to some out of control attacks, is nothing short of a heroic act as far as I'm concerned, FunTimes - THANK YOU.
    3 points
  9. Hey John, CH Father's, Spiny's and Pebles' comments all hit the mark debunking the article in question. There are studies and then there are articles about studies. While well designed studies/clinical trials as well as their published results and conclusions must conform to accepted standards, good science and format, articles do not. This article was a POS. While the cited study at PLoS provides what appears to be consistent results from their study of oxygen therapy breathing 95% O2 and 5% CO2 resulting in "normalized" cerebral blood flow and that hyperoxia breathing normobaric
    3 points
  10. Bah Humbug! It will not allow me to cut and paste into this reply! So, starting over, for the third time now!! Welcome to the board John!!! Sorry you have to be here, but very happy that you found us. CHF got a reply in while I was fighting the system, so I will truncate mine a bit. Todays' COPD patients mostly use a cannula, not a mask. So, they are getting an O2 boost, but not breathing pure O2. These are children. And they are talking about staying on the O2 for long periods of time. In the 60's/70's they could not acquire enough ultra pure O2 for premature infants and
    3 points
  11. https://www.statnews.com/2020/01/07/transforming-psychedelics-into-mainstream-medicines/
    3 points
  12. ...hi Kat...can't speak to the effectiveness of amovig or it's effect on busting, but have been in clinical trials for another condition .. ....if you can work it around a busting schedule, or are willing to pause busting if need be, i would strongly encourage participation for the following reasons: ....#1...with a bullet...it might work! ...if it doesn't work, you have identified yourself as a potentially willing trial participant, for a defined condition, and they already have all of your pertinent personal data. recruiting for trials is a tedious, difficult, expensive under
    3 points
  13. Hi all, now that I have found relief, I thought I would circle back and post about it here. I am not a doctor but this is my experience and obviously is not advice. I got a terrible 'flu' when I was 15 and got lots of persistent symptoms including daily brain splitting headaches that lasted for 45 years. That's the very abbreviated version. My headaches had a lot in common with cluster headaches but also had some differences. Busting was almost the only thing that helped me but I felt terrible when I was doing it so I didn't do it as often as I should to keep them at ba
    3 points
  14. ...point taken devonrex..... your situation breaks my heart and i mean no disrespect.....there are no absolutes for clusterheads.... ....sometimes the decades of frustration with the medical community and insurance companies that have failed us through indifference and ignorance gets to me.... i find it especially hurtful when some of the tools that help so many are unknown, misused.... or thrown at us in a useless manner.....and an opportunity to save so much anguish is lost...
    3 points
  15. Thank you, devonrex. I appreciate your caution about this, and will be more careful. I could quibble with some of your points, but what you say is wise and appreciated, and I will remember it.
    3 points
  16. You are so right about it having a habit of changing.. I got my first CH when I was 23 (I am now 62), and it has changed and morphed over the years. I just started the vitamin regimen in 2016, had no cycle at all in 2017-2018, had a light cycle of "shadows" in 2019, I am now at "what I hope" is the end of a cycle that started early December 2020... Even though this has felt like a full cycle in frequency, it is much lower on the pain scale, and they are not lasting as long. I really hoped when I went the 2 years PF, I was going to be one of the lucky ones that would never have one ag
    3 points
  17. Funny just pulled MindMed up. WOW 1.1 Billion valuation for a company that just buys psychedelic research from Switzerland and Denmark. (Sorry in advance, changing subject mid sentence... ) It seems to me like the stock market has completely lost it's mind (no pun intended). Valuations to stock price on everything is out of this world. Tesla has a valuation of 167X it's annual projected earnings. No doubt Tesla will grow, but to say a company is worth now what it's combined net income will be after 167 years is simply crazy... (ok now back to your regularly scheduled program, ha ha.).
    2 points
  18. I dose all the time (about 15 times a year) and besides a dentist trip triggering I have skipped three solid years of cycles and counting.
    2 points
  19. https://psilocybinalpha.com/news/mindmeds-lsd-neutralizer-study-begins 'MindMed has commenced a study for its “LSD neutralizer technology,” which it hopes will be effective in shortening and even stopping the effects of an LSD trip during LSD assisted therapy sessions. In collaboration with the Liechti Lab at University Hospital Basel, a Phase 1 clinical trial will evaluate the effect of ketanserin for this purpose. MindMed hopes the study will be completed by the end of 2021.'
    2 points
  20. As I understand 4 grams of dried mushrooms is equal to 20-25 mg active ingredient. This being the case the max dose in the Yale study would be about the same as 2 grams dried fungus. If i recall the study design included input from several folks with descent experience and influence with cluster busters. The safety studies with psilocybin done at UW Madison used an escalating weight adjusted model of doses from 23-30 mg/70 kg body weight. Basically at the top end they received the equivalent of 5 plus grams dried which is often considered a "heroic dose". I do not believe an
    2 points
  21. ...yeah, i know, it aint gonna happen officially. we've pretty much always been on our own...or what's a Clusterbusters for? citizen science that DECADES down the line might get a mention like "yeah those alt medicine cluster folks were onto something".....................
    2 points
  22. Hmmm.....is it an un-buster? That would be a good question. I have the feeling we'd be left trying to figure that out ourselves for a good while before any psychedelic / ketanserin / CH study would be undertaken.
    2 points
  23. Thanks, John'. I'm now "familiar" with it, from having read the study itself, which is here -- https://journals.plos.org/plosmedicine/article?id=10.1371/journal.pmed.0040173 -- and also from glancing through some articles that cite it. I certainly have nothing definitive to say, except to suggest the following: 1. The study was done in 2007. You would think it would have been compelling enough to inspire significant follow-up and maybe an actual change in O2 delivery procedures for healthy adults, but I don't see that having happened (though I might not have looked in the right plac
    2 points
  24. This is wonderful Snowflake! I would suggest that you get your levels checked again before you would normally have a cycle. If your level is still below 80 or around 80, I suggest that you up the D for a month or more to provide your head with a buffer. I keep mine at around 100. ATB!!!!!
    2 points
  25. The numerators in search of denominators is a common expression in the research world. It reflects the bias or observations of individuals who treat a specific diagnosis with a some intervention and see improvement and credit the intervention. Then later its determined the problem resolved for other reasons unrelated to the intervention. It is why power calculations are required in research before starting. If a study does not have enough participants to detect a difference then you are wasting time doing the study..A power calculation helps you set the denominator so a real change can
    2 points
  26. They TMac, Good questions. 3 CH/night is not good and a 25(OH)D3 serum concentration greater than 150 ng/mL is not a worry by itself. The goal of the anti-inflammatory regimen is a CH pain free response. The fallback is a significant reduction in CH frequency from an average of 3 CH/day down to 3 to 4 CH/week as long as oxygen is available. Given the amount of vitamin D3 you've been taking and your 25(OH)D3 serum concentration is >150 ng/mL, I'll make a SWAG (sophisticated wild-ass guess) you're battling an immune system reaction caused by an allergy. An allergic reaction is
    2 points
  27. Hi Batch - I started the D3 regimen on 1/25. I did not get blood tested prior. I am taking all the supplements listed except zinc, boron, and vitamin a because my cvs didn’t have those and my doctor told me to take those supplements directly and not take multi vitamin. I was having 2-8 headaches a day in the week prior to starting. Today is 2/2 so just over a week in and I haven’t had a headache in 48 hours for the first time in 3 months. I’m already at my longest cycle yet so perhaps it’s just coincidence and not the supplements helping, but I’m betting they are helping based on the wiki evid
    2 points
  28. I see a lot of good advice for treatments. Might I suggest a guided meditation app like headspace? While it does not do much for the pain and attacks, I have found it extremely useful in between attacks to calm the anxiety, the other shoe going to drop feel, the fear that we have all likely experienced waiting on the next.
    2 points
  29. Drewbie, I'm going to guess here that you are actually NOT "one biological flick of a switch away from full blown cCH", but of course I realize strong anxiety can make it convincingly feel like you are. Besides encouraging you to continue to rigorously adhere to the D3 regimen, I'll just repeat what I've reported in other threads in this forum, even though busting may not be advisable, and could present sourcing challenges for you: I found busting not only helped quash some entire CH cycles for me, but it long term quashed my CH related PTSD-like symptoms (basically anxiety/fear/dread). I
    2 points
  30. I don't have a lot of answers, but I do have a 4 year old daughter and I totally understand that feeling of not being enough of yourself to be a good parent. I had a CH attack come on while setting up to make slime with her and it broke my heart to send her to go watch tv instead while I endured...it felt like I was literally watching my life be stolen from me. I bought RC seeds on tranceplants.net a couple weeks ago - they haven't shipped yet it looks like but it wasn't very expensive so I felt ok about it as an experiment.
    2 points
  31. Agreed -- it's stunningly wrong. (I should mention that the BOL trial was funded by ClusterBusters.) Many of us here (or several of us, at least) have observed or participated in many experiences of trying to make BOL available over the past ten-plus years. A company, Entheogen, was founded in part for that purpose. But Entheogen couldn't raise enough money to do the necessary clinical trials toward FDA approval. Clinical trials are very expensive, and among other things potential investors didn't see the potential market as big enough to justify the investment -- not to mention that a
    2 points
  32. I agree with @Chris Moore. Surely there's something the CH community can do to help things like this on their way? I just find it completely staggering that, despite the obvious potential of BOL-148, that here we are over 10 years after a successful study, this option remains elusive as a treatment. I find it so damn demoralising that options exist to potentially change lives and yet those things don't reach patients at all, or at least not in legal ways. It's kind of abhorrent, for example, that CH sufferers who benefit from psychedelics have to break the law - a face considerable j
    2 points
  33. Welcome! Sound like you might want to read this posting from a couple of years ago: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/ See what you think about that route...
    1 point
  34. I was kind of going off topic a bit over at DMT - First time finding an effective abortive, so I'm moving my tangent touting psychedlics as anti-inflammatories over here. If I understand correctly, the anti-inflammatory effect of psychedelics is thought to be mediated through the serotonin 5-HT2A receptor. Article - Psychedelics as Anti-Inflammatory Agents Article - "Research has shown that psychedelics, such as lysergic acid diethylamide (LSD), have profound anti-inflammatory properties" Article - Scientists identify a powerful anti-inflammatory compound in psychedelic d
    1 point
  35. @kat_92 Fully understand that. The Aimovig is in the same order as Emgality here in the Netherlands, round 620 euro per shot. It is not covered by insurance though, so for me it would break the bank. I am chronic too and nothing really helps to get me out of cycle, but if it had been successful, i would seriously consider this, but both weren't. Hope you have PF days Alex
    1 point
  36. @FunTimesyou are a true hero! Thank you for helping the future
    1 point
  37. So, I should get off my heating pad and do 'something else'? Great research Jeebs!!!
    1 point
  38. Hey Amir, I sent you a pm. You can download the posted version of the anti-inflammatory regimen at the following link. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 It has the dosing details you need for all the supplements in this regimen. Take care and please keep us posted. V/R, Batch
    1 point
  39. Article: Transforming psychedelics into mainstream medicines "......research has revealed that some psychedelics that activate the serotonin 2A receptor are potently anti-inflammatory at doses unlikely to result in psychoactivity."
    1 point
  40. I gave it try a couple of years ago. I was well into a challenging cycle and gave it a 3 month trial. My cycle stopped for 18 months and when it reared its ugly head this past August I tried it again without any relief. After the Amovig I tried Emgality for three moths without any relief. In retrospect I belief the first Amovig trial corresponded witht eh end of my cluster cycle and it gave the illusion of success. I never had side effects from Amovig but emgality made me feel pretty crappy (flu like) for a day or two after injection. When you read the studies For this class
    1 point
  41. Hey Amardeep, This may be a long shot, but here you go anyway. The following doctor may be the one you are looking for in India who treats CHers and headache patients. Dr Renu Mahtani MD 407, Millennium Star, Dhole Patil Road, Pune - 411001 Maharashtra, India Contact : +91-7887887665 (WhatsApp then call ) Email : mahtani.renu@gmail.com Website: www.renumahtani.com Dr. Mahtani is a neurologist trained in the use of the Coimbra Protocol. https://www.coimbraprotocol.com/the-protocol-1 This is a treatment protocol for remitting recurring multiple scleros
    1 point
  42. @amardeep, We had a young man from India who attended the clusterbusters conference in Austin, Texas a few years back....although he's a member here, he's not very active. I know I've seen your name in the Facebook group and he is a member there as well. I'll send him a message and ask him to either check in here or reach out to you on Facebook if he can help guide you.. Dallas Denny
    1 point
  43. Stephen, by bet is on the D3 Regimen. It has done so much for so many!!! My last cycle was 8 months long, all night, every night. That was over 3 years ago now.. First I noticed the ramp up was slowed and the hits were lower on the pain scale. Then they stopped. Yes, I do still get the occasional hit. But no cycle!!!! If you ever want to 'test' the regimen, then stop for two days. That is all that it takes for me to get hit again. Then back on the vitamins and the hits vanish again. Congratulations on your new life!
    1 point
  44. Hi everyone. Thanks for checking up on me @spiny, that's really kind. Latest update is that I'm fortunately feeling quite improved on the mental side. I don't feel like I'm living out a 24/7 panic attack! I think I found a reason for why I hit a really low point anxiety wise. I think I mentioned I've started up the ketogenic diet? That was mid last week, and, with the benefit of hindsight, I realise I was being clobbered pretty hard by "keto flu" on Friday and Saturday especially. At the time I'd put the way I felt physically and mentally down to anxiety. However, the fog seemed to
    1 point
  45. Drewbie, it seems like cycles are up this year all over. I suspect, along with others, that people did not get their normal amount of sunshine this past summer. That has resulted in lower than normal levels of D for many, which means that loading back up a bit can help. Perhaps ask your neuro to order a blood test for you.
    1 point
  46. There's info in here: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/ If your medical tanks are large ones ("M" size or larger) you won't need a new regulator. You can look at the links within that post to see if what you have is the same as what is recommended. Large medical tanks and ALL welding tanks use a CGA540 connection. No one here has reported any health issues/bad reactions from welding tanks, and a lot of people use them. Some people argue that since impurities will really mess up a welding job, welding O2 has to be at least as pure as medical.
    1 point
  47. drewbie, I haven't read your whole history, so maybe I'm mentioning things that you have already addressed, but there's a lot of stuff out there that could be part of a plan B that becomes part of Plan A. I feel hopeful that the D3 regimen is likely to make a big difference for you. A week is way too soon to tell about that, but it could be what is at least reducing your symptoms now. I think Batch (xxx) would suggest that at a time like now when your symptoms have ramped up, you ought to also be taking Benadryl or Quercetin. Jteira has mentioned busting. A person might even be able to do that
    1 point
  48. The company is "...doing a lot of preclinical work to complete a package for an IND filing for sometime in the fall, for the full-blown phase two clinical trials for BOL-148.” They have acquired a patent to make BOL without having to use LSD to make it. That's a big deal. https://www.forbes.com/sites/amandasiebert/2021/01/18/betterlife-pharma-is-developing-second-generation-psychedelics-drugs-that-leave-out-the-trip/?sh=1405582f648f&fbclid=IwAR1qjwmeOl-LLa9KQyetBMeRSQpBtwKJmmpz0xxX27kFM6-1cRHmE-T5e0o
    1 point
  49. I was unemployed for 8 months after I lost my job. The whole time everything just seemed hopeless. Nobody would even call me for an interview. Finally landed a job. Not a great job but in my desired field. The feeling of finally getting out of that situation was amazing.
    1 point
  50. Thank you Batch, I have reduced the hits to 1 or 2 per day and hope that there is light at the end of this tunnel
    1 point
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