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  1. Health Canada must reconsider man's bid to use magic mushrooms for cluster headaches, Federal Court rules | CBC News
    4 points
  2. Really nice shoutout in an article in Vox this month! https://www.vox.com/future-perfect/2024/5/15/24156372/psychedelics-chronic-pain-cluster-headache-medicine-lsd-psilocybin
    4 points
  3. Find someone who will listen and not hold anything against you. Someone who knows your just venting to feel better. Remember that it could always be worse ( Not sure what that would be like). I am in the same boat as you are, chronic, tried just about everything on this site and it only "just helps a little". Kind of sucks but keep at it. something may kick in and get you a week off from the hell. I tend to go off the reservation with the 5 day rule and the blocker rules when things are bad. I do whatever I think will help even if its just a little. Keep at it and keep lookin forward you will cone out of it eventually and be just fine.
    3 points
  4. Hey @devonrex, Sorry your feeling down. Sure is an easy thing to get sucked into when you have to deal with CH. The ptsd is a hard one for me as well, I remember asking on here "how often a cluster head thought about attacks" because I think of them embarrassingly often. I started meditating to for 10-15 minutes a day and just concentrating on trying to block out my worries. I'm not all that good at it, but when you are concentrating on something other than the fear of an attack, it gives less time for your mind to drift back to it. Nowadays they even have apps that walk you through the breathing and what not. For the anxt, I remind myself (probably 20 times a day) that when it happens, I will get through it and that I always do. I think the depression is somewhat natural as it not only hurts beyond explaining but makes one sad to feel excluded from the world which is DEPRESSING so I try and catch myself at the first sign of the gloom and doom mode and do something (anything) other than let myself get trapped in the walls of my own thought jail. I like to write when I am starting to feel a bit depressed because for some reason the writing always seems to come out way better when on the edge of gloom jail. I also agree with @Oaksthat little things like forcing yourself to take a quick walk or sitting in the sun make a difference. Hang in there!!
    3 points
  5. For me it's a daily battle to get outside and take a walk. some fresh air and talking to the neighbors is always positive. it sounds stupid, but little things help. stay positive, it will pass.
    3 points
  6. A bit of an update 'Suicide headache' patient granted magic mushroom access after Health Canada U-turn After a federal judge’s scolding for its “unreasonable” and “unintelligible” handling of a Calgary man’s bid for legal access to psilocybin for excruciating headaches, Health Canada is backing down. The federal health agency has granted cluster headache patient Jody Lance emergency access to psilocybin, a psychedelic compound found in “magic mushrooms.” Lance’s win comes two weeks after Federal Court Judge Simon Fothergill ruled Health Canada wholly disregarded legal arguments that Lance has a Charter right to medical grade psilocybin. Health Canada’s initial refusal to grant Lance access to the drug under its Special Access Program also lacked the “requisite degree of justification, intelligibility and transparency,” Fothergill wrote. Health Canada’s assessors tried to argue that other modalities hadn’t been ruled out, drawing criticism from Lance’s legal team that it’s easier to qualify for euthanasia in Canada than it is to access novel therapies for headache relief. In order to be eligible for MAID — medical aid in dying — people don’t have to first exhaust all available treatments options. Health Canada’s reversal comes after Fothergill ordered a “redetermination” by a different decision-maker. Health Canada had 14 days to render a new decision, a deadline that expired last Friday.
    3 points
  7. 3 points
  8. Dr. Emmanuelle Schindler discussing her research.
    3 points
  9. 3 points
  10. Any headache condition is terrible. I hope you can get to the bottom of it. You had me thinking of my first experiences with cluster headache back in 1998ish. I had no idea what was going on and I went through it with no doctors thinking I was finally feeling a headache like people always complain about since I never had any type of headaches before that. Either way it will be OK though, just something to deal with. You got this.
    2 points
  11. Hi CJ, This sounds familiar and very much like CH. A couple questions. Is the pain only on one side of your head/face? How long did it last? And, What migraine pills did they give you? a lot of medication prescribed to CH is counter productive. just want to make sure you get relief and answers.
    2 points
  12. The first successful application in Canada for a Cluster Headache Patient! Huge news! Big thanks to TheraPsil for their work behind the scenes on this! https://www.chathamdailynews.ca/news/suicide-headache-patient-granted-magic-mushroom-access
    2 points
  13. argh..I'd love a drink, but stay away from any alcohol during an episode. red wine is worst trigger for me. Last night, after three months without a drop, I had two beers. An hour later the shadows crept in for a short stay. I'm enjoying a PF break, so it will probably be a dry summer for me. no need to stir up any demons.
    2 points
  14. Hi Sam and welcome.. To answer your above question-Yep... Good that you found the ginger. I use a mixture of turmeric, ginger and turmerones which helps a good deal. It goes away sometimes and comes back sometimes I have never used it but have read a few similar things. Unfortunately most of what I have read has been on the not so helpful side. Maybe get an appointment with a ENT Doc. could be sinus related I would start with the D3 ASAP! It has helped so many of us!
    2 points
  15. 2 points
  16. Bob talks about the history of CB...
    2 points
  17. There's a list of food triggers here: https://clusterbusters.org/forums/topic/4568-triggers/. This is the first time I remember a mention of cooking oil.
    2 points
  18. New article details how Clusterbusters is sharing what we've learned about psychedelics for pain with people suffering from other conditions. Building awareness and support is how we will increase legal access to psychedelic medicines. https://conta.cc/3wUVtZm
    2 points
  19. hu hu Dear fellow sufferers. I want to tell again, I am still without an attack. I wish you the best successes and longest pain -free times of all time. Best regards Ps: 24 months pain -free 98kg smoke and steam still
    2 points
  20. Goadsby led the gold-standard clinical trial of oxygen, for which we can all be grateful, and he seems to be a leader in pharmaceutical treatments for CH, but he indeed has been hostile to busting. It will be nice when clinical studies prove him wrong.
    1 point
  21. Hello! New to the group and would definitely appreciate some insight. I've read quite a lot in here and elsewhere and I have a few questions I can't figure out. Also just nice to know that other folks can commiserate/understand. I've had cluster headaches since 2013 when I was 23. It was very clearly episodic for my first 5 episodes until 2020. It would come every 1.5 years or so and last a month ish. The first 2 times I found no relief at all and it was brutal, but then it stopped as quick as it started. The third time the doctor diagnosed me with CH and introduced me to verapamil and injectable triptans. Those both worked wonders and my cycle was stopped after a few weeks for episodes 3-5. Episode number 6 was in January 2022 and was a little bit different. I didn't have so much success with the verapamil but the really painful attacks again only lasted about a month/6 weeks. In retrospect I think in this episode I only had access to prolonged release Verapamil, which I understand may be less effective. Now the weird part. Since that last episode in 2022 I've essentially had daily shadows (I referred to them as 'twinges' until I found this forum). I'd say less than 10 days in total where my head felt totally clear and normal since early 2022. Some days are better than others but essentially very few 100% clear days. Shadows come and go over the day. But on the flip side no full blown attacks either. This lasted for over 2 years which was both great (no real attacks) but also unsettling (daily shadows). Now, in late April a full episode again seemed to start and is still ongoing. I've been on Emgality since Fall 2023. I was trying to get the daily shadows under control at that time. When the full cycle started in April 2024 we then upped the Emgality dose to two shots (I’m in Asia so might be slightly different protocol). The cycle itself has been ongoing since then, now for about 6 weeks (second dose of two shots a month in). But the attacks have been milder than any previous attacks in the past (no red eye, only 1 or two where I ended up pacing, and only a few times I've needed to take a triptan, some days with just shadows). It's still pretty awful, but not as bad as any previous cycles. So after all that, I have some questions: - does anyone else have like episodic attacks but chronic shadows? If so, any specific tips for managing the ongoing shadows? I just started taking a ginger supplement a few days ago so we'll see if that helps. And did it ever go away for anyone? I used to have beautiful 1.5 years between episodes but now its a lingering thing every day. My current neurologist has been saying I'm now chronic but I'm not sure that seems correct seeing as I didn't have any actual attacks for over 2 years until this current cycle, just the daily shadows. - has anyone had a similar experience with Emgality where it seems like its helping quite a lot but in some subtle ways (lower frequency of attacks, lower intensity, no red eye)? My neurologist here insists that Emgality is the way to go, although I did have more success with Verapamil in episodes 3-5. (Less so in 6). Although i don't think it did anything for the daily shadows in the fall. - during this recent episode since April I feel like my left Eustachian tube is quite blocked/crackly, which has never been a symptom before. It crackles and pops a bit when I open my mouth at all times, but then during an attack it is much more noticeable. Does anyone else experience this? - I have one hope/theory for the daily shadows. I am now in Hong Kong where the weather is generally humid for most of the year. The daily shadows started about 3 months after I arrived here. I will leave in summer 2025 so maybe it will improve in my next location. Anyone experience similar and anyone find it gets better after a move?? I didn't think my previous cycles were weather related as they would happen at 18-20 ish month intervals, so at different times of year. They are also always inconsistent at what time of day they occur, and almost never at night, which I know is an oddity. I haven’t done the high dose D3 or busting but am considering all the options at this time. I had little success with oxygen last time but I expect my set up wasn’t correct, and this time the attacks have been mild enough to bear without. I'm hoping the current cycle ends soon and ideally the shadows with it. Looking forward to hearing from any of you/also just really nice to get some of these thoughts/mysteries off my chest and on to the page. Cheers
    1 point
  22. ...that struck me as good thought...why not? haven't heard of for Emgality before but seems might provide enough extra blood serum level to work. will never forget the first methylprednisolone IV that stopped a cycle mid cycle for me. seemed miraculous! alas, never worked again...
    1 point
  23. Thank you Bosco for the response. Really appreciated! Nice to also have some solidarity - this thing can be so isolating. I'm not sure how successful the Emgality has been, but interestingly the neurologist has suggested trying taking it as an IV infusion, so I might do that in the next while if the cycle hasn't ended. Apparently it's not that common of an approach yet so if I go that route and if I have any success I'll let people know. I'm not sure if that's an available option everywhere though or just in Hong Kong. Jury is still out if the cycle has ended and I'm back to just the daily shadows or if the Emgality IS doing it's job and once it wears off the cycle will be prove to be still ongoing. TBD. Interestingly, I've been seeing an ENT regularly recently as i've done a few surgeries in the last while for sleep apnea. We were incidentally hoping that addressing the sleep problems might help with the headaches but so far doesn't seem to be the case. I saw the ENT a few weeks ago and he wasn't sure about the crackly ears but I'm going to ask again at my next appointment because it was just in passing before. Thanks again
    1 point
  24. Thank you so much! I am reading on shadowing now. So helpful, and a bit of a relief. I’ve been worried it’s a tumor.
    1 point
  25. I really appreciate this response and advice. I am going to take a look at what else I should be taking and how much. Sincere thank you!
    1 point
  26. Since you're new to it, this overview might be helpful: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/. At the end of that post you can read the basics about busting, which is why this site was originally created. How much D3 are you taking, and are you taking any other supplements with it (calcium, for example)? Yes, that's how it works for most people. That's one very good reason to optimize the resources you do have (D3, oxygen, triptan) and be sure you know what else is available to you.
    1 point
  27. What @BoscoPiko (and @Oaks) said! If you got the injection form of sumatriptan, you'll want to know about this: https://clusterbusters.org/forums/topic/2446-extending-imitrex/
    1 point
  28. Hi @Cjmoe, Sounds like your Dr. is a keeper! Unfortunately what you describe with regard to the stabbing pain in the eye on one side, tearing and nasal congestion is pretty indicative of CH. The part where you mention daily headaches that feel like a looming migraine sounds like what is often referred to as shadows. Shadows can be daily for some of us and more of a pre-attack warning for others. I'm glad you started getting your D3 levels elevated and urge you to read about the D3 regimen on here as it includes various other supplements taken in conjunction with the D3 to prevent the cluster bunny from attacking and it's important to incorporate them to reach cecassion. Lots of good stuff on this site. Happy you found this place but sorry you had to...
    1 point
  29. Clusterbusters 19th Annual U.S. Patient Conference will be held September 12-15, 2024. It will be an incredible opportunity to join with other clusterheads and learn from experts about how to manage this challenging condition. We hope you will join us for a long weekend of support, education, and family in Rosemont, IL. For more info and to register: https://cbrosemont2024.planningpod.com/
    1 point
  30. They are mentioned all over this board and are a pretty universal experience, though not hear my neuros really discuss them. In reference to migraines I tend to hear them discussed as 'auras' which can include the phantom pain kind but also visual 'halos' around lights, auditory auras and such. The skittering pain and just kind of a 'noticing something where my clusters are' be it pressure or the fleeting pain seems about the closest thing to auras clusters tend to have in my experience.
    1 point
  31. I know some hat link clicking here are a couple excerpts A 51-year-old Calgary man who suffers debilitating cluster headaches has won a Federal Court battle forcing Health Canada to reconsider his bid for legal access to psilocybin to treat his extreme pain. Ottawa Federal Court Judge Simon Fothergill, on May 24, granted an application for judicial review of Health Canada's denial of Jody Lance's bid for legal access to medical grade psilocybin — the active ingredient in hallucinogenic mushrooms — to manage pain associated with the headaches, which is so bad they have earned the nickname "suicide headaches." In 2022, Peter McAllister, the medical director of the New England Institute for Neurology and Headache, wrote then Health Minister Jean-Yves Duclos in support of Canada allowing legal exemptions for the use of psilocybin for cluster headaches, which he described as an "agonizingly painful condition that can push patients to suicide to escape the suffering." McAllister wrote that in his experience, "many cluster headache patients obtain outstanding results using psilocybin-containing mushrooms," which he said helped prevent episodes with little danger or side effects. Pope, the human rights lawyer, says it was the same for Lance. "He tried a whole laundry list of medications and dozens of different combinations," Pope said. "Some worked for a brief period of time and then stopped working, or even made the headaches worse." He argued that by denying Lance access to psilocybin, federal authorities infringed on his Charter right to make reasonable medical choices regarding his physical and mental wellbeing. Last week's ruling gave the health ministry 14 days to reconsider Lance's request and to take his Charter rights into more careful consideration. Fothergill called the decision to deny Lance access to the drug "unreasonable" and "unintelligible." Health Canada told CBC News via email that it has noted the court's decision and will comply with the judgment. In an email to CBC News, Lance said he hopes this ruling helps others like him who are seeking safe, legal options to avoid what he called an "unnecessarily difficult journey." "It's a first step in the right direction," wrote Lance, a former land surveyor. Spencer Hawkswell, president of the psychedelic advocacy group TheraPsil, described the ruling as a major step forward that makes clear that "what these patients are asking for is not ridiculous." The ruling noted that this infringement was exacerbated by delays and risked Lance's life due to his suicidal ideation and the fact that he could potentially be eligible for medical assistance in dying (MAID). Pope says the process for becoming approved to use psilocybin legally in Canada seems more difficult than applying for MAID. "He's found a treatment that works for him and makes life bearable. But it's absurd: If he couldn't get access to this treatment, then MAID really would be a legitimate possibility." "Mr. Lance should be allowed to use this for medical purposes with dignity and not be called a criminal for it," Pope said.
    1 point
  32. Drinking is fine when I’m outside of an episode. I can enjoy a ton of red wine, have a normal headache or hangover, and be fine. However, during an episode it’s a “nuclear level trigger” as @Bejeeber eloquently writes… basically guaranteeing my emerging CH will be a minimum 8/10, and stretching its duration way out. Sucks because CHs make me very nervous and caffeine amps me up. Although caffeine doesn’t help much.
    1 point
  33. And the god himself has travelled for America again
    1 point
  34. Was finally able to get into the site and retrieve my info.
    1 point
  35. ....unlikely that cooking oil in and of itself would be a trigger....however, old/used/stale/high temp abused cooking oils have high levels of free fatty acids which, among other things, are bitter, darken the oil, cause greasy mouthfeel and are just all around nasty. it wouldn't surprise that among these there could be triggers due to vasoactivity. minimize re use of fry oil, old oil, or restaurant foods deep fried in never changed oil (you will know by taste and mouthfeel). high volume food service uses oil fast enough to minimize excessive free fatty acids, as well as being able to afford frequent oil changes. low volume stores use til gone and frequently do not clean out food particles from fryer, which just worsens the problem.
    1 point
  36. Positive Results: Psilocybin Reduces Cluster Headache Attacks A new extension phase study from Yale led by Dr. Emmanuelle Schindler proves that repeated, low-doses of psilocybin lead to a significant reduction in the number of cluster headache attacks. After doing a 3-dose pulse regimen of low-dose psilocybin, cluster headache attacks went down from a baseline of 18.4 to 9.8 cluster attacks per week. For more information: https://conta.cc/4d8NI22
    1 point
  37. Thought I'd watched them all but somehow I missed this clusterbusters YouTube video.....until just a few minutes ago!! I've had the pleasure of meeting and getting to know almost everyone featured several times over the past 13 years! Be forewarned, grab a hanky or some tissues before watching as this video may result in eye leakage...
    1 point
  38. LOL Instantly had this flash in my mind
    1 point
  39. I drank a 6'r tonight and gave the beast the middle finger. Smoke em if you got em warriors. I don't let the beast dictate my shiz. Hi all!
    1 point
  40. @BoscoPiko no worries, i know the cluster brain struggle all too well. I managed to get covid in the last few weeks of my cycle and only symptom was brain fog. I dont know how i managed working... I just ran through a fresh install of the code to check it was do-able for people, it was a mess. I've updated it now to run under Docker which is the closest I can get to a one-click installer for now. You'll need Docker Desktop on your PC, or a Docker host on your network. https://www.docker.com/products/docker-desktop/ Put together a quick youtube video of the process once you have docker desktop running Its nearly 4am here so be gentle lol Docker Compose file is here: https://raw.githubusercontent.com/OliPassey/headache-tracker/Mongo/docker-compose.yml The container has been tested on windows and unraid and works fine, docker-compose file only tested on win11 so far. ymmv. Shout if you get lost Blog: https://olipassey.me.uk/cluster-headache-tracker/
    1 point
  41. Hello everyone!! Have you registered on the Clusterbusters “Patient Registry” yet? Over the years, Clusterbusters has built the largest worldwide patient database in the world. Become a member of the database and possibly a participant in a research project that will lead to better treatments and eventually a part of the cure. By completing this form, you are not registering for a specific study that is underway or that will start in the future. You are not agreeing to become a participant in anything. You are only agreeing to the possibility of being contacted in the future to ask for your participation. Research studies sometimes only require your participation from home. It may only require completing surveys or questionnaires. Some of you may have recently done this for the work underway at Yale University. Some clinical studies require your participation in other ways. Some may include travel. Each study has different requirements. Choice of participation is yours and that of the study investigators and does not involve Clusterbusters in any part of the process. This registry is open for everyone. There are no requirements of past, present or future choice of treatments or any particular cluster headache or human traits. People from all walks of life, all ages and every description, suffer from cluster headaches. We are presently involved in several ongoing research projects as well as several others that are in the long process of approval. As we are involved in research on an international basis, this survey is open to everyone worldwide. We encourage anyone with cluster headaches to respond and help inform others of its existence. As many studies focus on certain segments of the cluster population, episodics vs. chronics as an example, you may not be contacted for every study that is underway. Be a part of a better future for cluster headache patients and participate in our registry. As you will see again on the forms themselves, all of this information is and will remain completely private. The survey, all data and any and all future distribution is administered by the Clusterbuster’s Administrative panel and members of its medical advisory board. Information and people will move the research forward. Please be a part of this. Just the completion of the questions on this short survey, by the thousands that are included, helps gather important information. Please share this with others you may know that suffer from clusters. If you know of anyone that does not have access to a computer, contact us at info@clusterbusters.org and we will mail a written copy for completion and inclusion. To participate, please go to this link: http://tinyurl.com/n9ou73a Some of the questions may give you an idea of some of the projects we are currently working on and there will also be more information available at this years conference. Even if you can't make the conference, we'd love to have everyone here on the registry. Thank you Bob Wold Clusterbusters
    1 point
  42. Caffeine does not trigger CH. From my personal experience and the people here. It is a very effective aid in moderating or aborting a hit for CHers'.
    1 point
  43. No....sigh...you're not...so please allow me to "fix" that fur ya: ABSOLUTELY! "I'm probably not going to be the first to tell you that I have found something that works for ME...it's diet...it's this diet....whadda ya think?"
    1 point
  44. That looks like it came from a migraine trigger list. Exactly the same. And no mention of alcohol that has to be one of the prime culprits in triggering CH (maybe because it isn't food )
    1 point
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