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devonrex last won the day on June 5

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  1. 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.
  2. Quick history, chronic refractory, been having daily attacks, 2.5 hrs in length with up to an hour between some random longer breaks, most weeks I get about 5 or so 9+, most are in the 8 range, no other breaks. Med list including everything mentioned on this site does little to nothing. Sleep is usually with a mouthful of sleeping pills after being up over 24 hrs so I am out like a light coma patient to get through a night. How do ya'll deal with the depression, anxiety, panic, ptsd day to day? I am kinda at my wits end and anything that might give me ideas would be great. On anti depressants and such. Best I got is music cranked and try to lose myself in it. But any thoughts, suggestions or ideas would be amazing.
  3. 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.
  4. 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.
  5. Might be shadows, times when there is some mild pain or sensation in the same area as cluster, much like the Beast is prowling around letting you know it is there, sometimes shadows foretell an attack, sometimes they linger after. I am not sure if this is what you are experiencing, but if it is it is very common.
  6. Health Canada must reconsider man's bid to use magic mushrooms for cluster headaches, Federal Court rules | CBC News
  7. As a note, I have had what I just assume are angry shadows, hitting into the 8 area during normal shadows for a few minutes then dropping back to the normal annoyed shadows.
  8. Same as above, sunct sounds like it fits, seems like you are getting to know that side of the primary headache family tree, which sucks.
  9. devonrex


    The sadly ironic thing, at this point I wish it were something like a tumor, then it could maybe have been removed by now and not still have these. Welcome to the worst family to be in, sorry you are here, but there is a ton of info and help collected here. Talk to your neuro, there are a few things that may work, ketamine as mentioned, dhe infusions, prednisone taper to verapamil, rc seeds (their legality seems all over the place)
  10. They or your doctor might be able to get one for a 3 month or whatever the battery life is on them trial, but from my and a few others I have seen here, it is pricey for a self limiting device.
  11. Just to add, got a free trial and it did nothing more than give me an elvis sneer from the muscle contractions and nothing else.
  12. To note, I was diagnosed years ago, so that is another.
  13. Was reading a study that linked autoimmune disorders as higher in adhd people and biological siblings, curious if there may be a link to clusters? How many here know they have adhd or are pretty sure?
  14. The eye shifting is pretty normal for rem sleep which means Rapid Eye Movement iirc. But stress and the season can really be doing it. I would second the above with getting high flow o2 with a tank and not the concentrator, at some point that concentrator is not going to cut it, hopefully it doesn't get there, but better to be ready if it does.
  15. I have found after exertion or stress, once I begin to relax I get hit. Sleep that hypnic jerk can be just as you are hitting rem and the body thinks it is dying and it does a quick nerve pulse/jerk. Rem is a trigger for many. I have found stress can either trigger or ramp them up a lot.
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