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Showing content with the highest reputation on 12/03/2025 in all areas

  1. I would think that it's nearly impossible to have a highly effective breathing strategy (full exhale/deep inhale) at 8 lpm. That would be because the bag on your mask doesn't fill fast enough to be full when you are ready to inhale. So it's great that that's working well now, but I think you would be able to make it a quicker abort, and maybe a longer-lasting one, with a breathing process that is supported by a higher flow rate. And I do think a strong cup of coffee will often be as effective as an energy shot or energy drink, particularly if you're not doing much caffeine at other times of the day.
    3 points
  2. A new clinical trial in Australia has funding approved to test psilocybin as a preventive treatment for cluster headache. The PEACE Trial (Psilocybin Efficacy and Acceptability on Cluster headache Episodes), led by Faraidoon Haghdoost and supported by the The George Institute for Global Health and the University of New South Wales under the Medical Research Future Fund (MRFF), aims to evaluate whether weekly low-dose psilocybin can safely reduce the frequency or severity of cluster attacks. There is also a survey on Faraidoon's page assessing the cluster headache research gaps based on the patients perspectives. https://www.faraidoonhaghdoost.com/post/cluster-headache-trial-got-funded-in-australia https://www.georgeinstitute.org/news-and-media/news/hope-for-cluster-headache-community-as-psilocybin-trial-funded
    1 point
  3. "The pilot ‘Psilocybin Efficacy and Acceptability on Cluster Headache Episodes’ (PEACE) pilot trial will assess whether 10 mg of psilocybin once a week for four weeks compared to placebo can prevent cluster headache attacks. The study builds on early patient reports and small-scale trials that indicate its potential benefits." So that's 1g dried cubensis give or take (0.8 - 1.2g) depending potency every 7 days for 4 weeks, in sort parallels the community busting protocol. I hope they are able to recruit the numbers. I had recently read one of his articles on migraine: Migraine management: Non-pharmacological points for patients and health care professionals He is also the recipient of the 2025 Peter Goadsby Award for Best Scientific Oral Abstract presentation at the Australian and New Zealand Headache Society Annual Scientific Meeting in Sydney on 30–31 August. His presentation, “Gaps in Research and Management of Cluster Headache Through Patient Perspectives,” underscored the need to listen to patient voices and address the gaps that remain in both clinical care and research.
    1 point
  4. Re: the caffeine - as long as you’re continuing to experience nice quick O2 aborts, no need to go there with it IMO, but when additional help is needed, here’s a decidedly strange and inexplicable thing: Those of us who have braved caffeine with our O2 for wake up attacks have pretty much universally found that somehow we can still unexpectedly go right back to sleep afterwards!!!!?? 5 hour energy type shots are popular, as they also contain plenty of taurine (which is thought by some to also be beneficial), and of course they contain just a fraction of the sweetener you'd get from an energy drink. I would hope they would also contain only a fraction of the other junk.
    1 point
  5. Most that stay on O2 after the attack is aborted find that 10 minutes seems to be the sweet spot. My advice is to experiment to find what may work for you best. My personal feeling on rebounds like this (totally unscientific, I'm not a doctor) is that either the attack wasn't fully aborted (comes back quickly) or that it's a separate attack that would have happened anyway (comes back after an hour or so). Who really knows for certain?
    1 point
  6. Greetings and sorry they are back - it sucks. My one fall from remission whilst using the D3 regimen saw me find o2 and the cluster o2 kit for the first time - I was getting o2 slap backs but as Bejeeber said that’s not bad to have several hours in between nocturnal attacks, I was aborting in 6 minutes or so and getting a slap back an hour later. An amazing advocate in our community Pete McCormick suggested to try staying on the oxygen for the same amount of time it took to abort the attack but at a lower flow rate, when I did that I found an immediate improvement back to my normal 2-3 attacks per night, aborted and back to bed in around the 15-20 minute mark which was an amazing improvement on previous abortives. I only needed the o2 setup for a total of four days before higher levels of vitamin D3 put me back into remission, thank God. Can’t add much about caffeine suffice to say some warriors use a strong black coffee rather than energy drinks and report it works, if concerned / wary about energy drinks, I know I am. I’d just straight hit up the oxygen upon waking rather than caffeine and save a strong black coffee or otherwise for shadows during the day. All that being said and in lieu of challenges obtaining Emgality, is the vitamin D3 regimen an option for you as another tool to add in the kit?
    1 point
  7. I've had a similar rebounding experience with O2 aborts of wake up attacks, and have noted others also reporting it enough that it appears commonplace to me. The rebounds can occur as frequently as every hour or so, something I'm personally familiar with. Your 3 hours between rebounds is relatively luxurious, and actually worth savoring from the perspective of some. It could be a good idea to have contingency planning for going with higher O2 flow, and having awareness of advanced breathing techniques and the incorporation of caffeine, just in case your success so far with aborting attacks at 8 liters doesn't hold (I don't wanna go all negative and alarm anyone, but sometimes the 8-10 liters doesn't hold, and beefing things up is required). Staying on the O2 longer after the attack is fully aborted might help extend the time between the wake up rebounds.
    1 point
  8. Last autumn/winter we ran a survey to gather data on human suffering from a range of conditions and experiences, and you were kind enough to participate by reflecting on your own suffering and providing responses, for which we are grateful. Some of you gave detailed descriptions, all of which were read. We have now finished analysing the data and have written it up in a new post on the Effective Altruism Forum, which you can find here: https://forum.effectivealtruism.org/posts/hTGScBoBDKwmAcGP6/how-to-quantify-global-human-suffering-results-from-opis-s We included some of the text descriptions, which convey a sense of what some of the suffering is like, beyond the numbers. Of course there was no identifying information disclosed. We plan to submit a reworked version to an academic journal, making the case for suffering metrics and for a larger survey that builds on what we learned from this first one. Our goal is for the prevention and alleviation of suffering, and especially severe and extreme suffering, to become a top priority of our governments at all levels. If you’re interested, you can also have a look at our recently published Compassionate Governance: A Strategic Guide to Preventing and Alleviating Global Suffering. Many thanks again, and wishing you to be free of suffering, Jonathan
    1 point
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