devonrex

I was t-boned in a car, saw it coming and tensed and messed up the muscles and stuff on the right side, the same year I got cluster. Correlation is not causation, but close enough together to consider. For a long time they were thinking issues with my TMJ is what it was, from the whiplash and nerve/muscles damage from the accident. Could be something to look into for you, because some of the symptoms with jaw, neck pain can be a TMJ involvement, I mean it could be both with the one triggering the other, either way if it is TMJ (Temporal mandibular joint, jaw hinge area) getting it fixed may help with the other or rule it out.

Same feels, mad that he got away with so much harm, glad he is finally stopped. World renowned meh, in cluster world he is reviled, what a freaking quack

In what seems to be an almost grey area with 'suicide' viewed as something problematic, we in Canada have access to MAID (Medical Assistance in Death), something I have inquired about, so in a grey area, I do have a plan, but if you ask about MAID you do not get sent to psychiatric, but if you mention having a plan you do. In any case, I see it as my absolute last resort. I feel you @MoxieGirlI am chronic and have up to 8 hits a day, every day, no breaks, with some powerful sleeping pills, I can knock myself out for 30 hours after a day and a half up but those are the longest breaks. I am still trying with the alternate methods but have had some really bad months, death in the family and any hallucinegenic is not great if you go in with a bad headspace and the current crop I have tends to really edge towards disassociating me strongly which is a pretty unnerving experience. All said, we have all wished an end in some way, but you need to reach out, talk, try anything and everything. And talk, to anyone, find a good listener, it goes a very long way in keeping it together.

Ideation, yes. For the numbers on this board, I have no idea. I know we as a demographic are more likely, I mean thus the name. If you have a plan I implore you reach out to a friend, a help line, a doctor, someone, the step from just thinking about wanting this shit to end permanently to having a specific set of steps in mind is a huge step and rather large red flag, so talk to someone, reach out.

I went around the sinus thing, TMJ diagnosis and so on before arriving with the cluster diagnosis. As for teeth, the only pains I have had in my life to register on my cluster scale were an ear infection I had once where Demerol was pumped into me in hospital, kidney stones and when a molar broke and got infected/abscessed, the trigeminal nerve services the top jaw and teeth as well as in around the ear, so I assume that is why the pain was so intense. You could still be having ch as well as the teeth issues. But abscesses in teeth and jaw can be extremely painful.

As someone who ended up with a concentrator, tell them to concentrate and stuff it where the sun don't shine, they are useless.

I am on Prozac and have been using shrooms without going off it, my neuro has also not said to even try dropping my antidepressants, I have actually upped the dose of them because of being chronic. So unless there is anything specific to the type of antidepressant you are on, it may reduce the effectiveness some but not negate it. I am not a professional or anything, simply my experience with mush, lsd and other busting while still on antidepressants.

Applying for drug coverage and have this on my plate ahead, they do a 100 mg dose then 12 weeks later can go to a double that. Any news from others would be good. Apparently, here, they will not allow off label use so I have migraines as well as clusters now

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.

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.

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.

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.

Health Canada must reconsider man's bid to use magic mushrooms for cluster headaches, Federal Court rules | CBC News

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.

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.

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)

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.

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.

To note, I was diagnosed years ago, so that is another.

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?

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.

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.

I have not had a drink in 6+ years any alcohol is a 100% trigger and will jack a hit up if I have any during. Never had a chance to try one off cycle, since chronic I have no down time. If I do get a break I likely will not chance it.

Team caffeine as well, I am on team chronic and go through so many monster 'zeroes' sugar free so not guzzling calories, taurine can act as an anti-inflammatory so I think that is why it helps in conjunction with caffeine. Caffeine has never been a trigger, strong smells (chlorine, bleach, pinesol etc) Alcohol, the rest just after exertion, fluorescent lights can trigger but tend to just ramp it a bit. O2, opioids (does not kill it but rounds off the sharp edges, even a 9 to an 8.5 is a huge jump for these.) been getting high dose lidocaine injections (nerve blocks) all around my eye, bridge of nose, forehead, cheekbone, temple once a week for the last couple months and they also seem to lower the overall pain, but no abort from it. (4% lidocaine in large doses, looks like I have been stung by bees). Everyone here is helpful and so much advise and simply support here. Glad you found us, also a shame you had the need to find us. Welcome to a most horrible club to join.

What I find odd, is many of the things we get relief from (Caffeine, hot showers, Verapamil) are all vasodilators...not constrictors. So, if this is caused by dilation of the maxillary artery it seems odd, that more dilation would help? I mean the single best abortive many have found, oxygen, is also a vasodilator.,