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Thread: Psilocybin found to be effective for treating cluster headaches

  1. #1
    Distinguished Community Member Sherman Peabody's Avatar
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    Default Psilocybin found to be effective for treating cluster headaches

    Before Bob had tried psychedelics for his headaches, he was a chronic sufferer who had tried more than 65 medications. Not one of them worked.

    Faced with a choice between brain surgery or psychedelics, a potential treatment mentioned by several sufferers online, Bob tried psilocybin for the first time. After dozens of approved medications let him down, 1.5 grams of psilocybin mushrooms, steeped as a tea, gave him his first relief in years.

    Two doses broke his cluster cycle completely. When I asked Bob about those first psilocybin doses, he said, “Within 45 minutes, I felt all the pressure drain from my head as if someone had pulled a stopper. My head felt clearer than it had in over 20 years, including times when I wasn’t in cycle. It was the most profound change that I had ever felt in my head pain/cluster life.”

    With any luck, the psilocybin studies that are being conducted at Yale this year will prove to be as effective as a scalpel, and we can do away with some of the brain surgeries currently used to treat cluster headaches in favor of psilocybin.

    -Brendan Burns


    STUDY: Response of cluster headaches to LSD and psilocybin

    R. Andrew Sewell, M.D., Alcohol and Drug Abuse Research Center, McLean Hospital
    John H. Halpern, M.D., Biological Psychiatry Laboratory, McLean Hospital





    INTRODUCTION: Cluster headache is generally considered to be the most painful headache that exists, described as feeling like a hot poker or awl slowly driven through the eyeball. It affects predominantly men (0.4% versus 0.08% of women) in their third decade, and is divided into two categories:

    Episodic: Attacks for a 4-8 week cluster period once or twice a year with a pain-free remission period.
    Chronic: Attacks constantly for more than a year with no remission period greater than two weeks.

    Ten percent of episodic cluster headaches ultimately evolve into the chronic form. Each cluster is marked by periodic stabbing headaches that increase in intensity over five to ten minutes,
    last 45 minutes to two hours, then die away. They typically will occur one to three times a day, usually at strikingly predictable times (often two hours after the patient falls asleep) but can occur as often as every two hours. The intensity of the pain is severe enough that patients have been known to commit suicide.

    METHODS: 120 cases were recruited from the Clusterbusters website, 242 from an online survey on quality of life hosted by Erowid and 21 who contacted us via email. Consent was obtained from 197 for an interview regarding use of medications and hallucinogens, and medical records obtained from 53 who met ICHD-2 criteria for cluster headache to verify the diagnosis. Patients rated the effectiveness of each treatment in aborting an individual attack, terminating a cluster period and preventing future clusters or extending the remission period.

    RESULTS: There were 11 women and 42 men, mean age 46 (SD 8.0), with mean age of cluster headache onset 31 (SD 12). Thirty-two had episodic cluster headaches, 7 had primary chronic and 13 had secondary chronic cluster headaches. 52 used psilocybin to control their headaches, and nine had used LSD. Three patients (6 percent) found psilocybin ineffective. Twenty-five (48 percent) rated it as 100% effective (termination of cluster period) and 20 (38 percent) partially effective. Of the 26 people who took psilocybin during an attack, 22 (85 percent) found it aborted the attack. The psilocybin effectively extended the remission period in 18 (95 percent) of 19. Twenty-two (42 percent) took the psilocybin in a sub-psychedelic dose; of these, 19 (86 percent) found it >75% effective, comparable to the 20 (67 percent) of 30 taking a psychedelic dose who reported similar efficacy. Of the eight who took LSD to terminate a cluster , seven (88 percent) felt that it was 100% effective. One LSD user found that it aborted an attack, and four (80 percent) of five experienced remission extension when they took LSD between periods. Only two ingested a sub-psychedelic dose of LSD, but it was still effective.

    CONCLUSION: LSD and psilocybin may be effective treatment for cluster attacks and cluster periods and may prophylax against future cluster periods with a single dose, a quality shared by no other medication. A randomized placebo-controlled trial is warranted.

  2. #2
    Distinguished Community Member Sherman Peabody's Avatar
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    Suicide headaches' drive patients to try LSD and magic mushrooms to stop the pain

    By Martha Henriques
    September 22, 2017

    The psychedelic drugs have a similar structure to medications used to treat cluster headache.

    Cluster headaches are so painful they have earned the nickname 'suicide headaches'. When the medication to alleviate this intense pain doesn't work, sufferers report using psychedelics instead to prevent the attacks.

    Many cluster headache sufferers, and some people who get severe migraines, report turning to LSD and psilocybin – the psychoactive component of magic mushrooms – out of desperation at a lack of effective treatment, a study in the Harm Reduction Journal finds.

    Up to 18% of the population suffer from migraines. A much smaller population – about 0.1 to 0.2% of people – suffer cluster headaches. These can both be debilitating conditions, leaving people entirely incapacitated during an attack.

    Cluster headache suffers say that a single attack can be more painful than childbirth. But cluster headaches are never just single attacks. They are linked to the body clock, or circadian rhythm, and happen at the same time of day – within minutes – several times a day. This happens for up to 8 weeks on end once or twice a year, at the same time of year. During one of these episodes, sufferers are often unable to go about their normal daily lives. Most say that it is worse than any other pain they experience.

    A lack of effective medication to treat and prevent these illnesses leaves sufferers as a "vulnerable and desperate" population, study author Anette Kjellgren of Karlstad University in Sweden told IBTimes UK.

    "There is still a great need for treatment for these conditions, since so many patients reported in the forum they have not got adequate help, and desperately searched for something that could possibly be useful," said Kjellgren.

    Not infrequently, these searches ended with illegal drugs. Kjellgren and her colleagues analysed reports on internet forums for discussing the conditions, to see how and why people used drugs like LSD and psilocybin to self-medicate.

    "The stories on the forum are often about total helplessness, thoughts of suicidal behaviour or anything just to get rid of the pain. So this can lead to risky behaviour, also untested novel psychoactive substances or "internet drugs", which is mirroring their desperate need for help."

    Forum users with cluster headaches reported that "cluster pain is an order of magnitude worse" than breaking bones, while others said, "I came pretty close to ending my life over it." The use of psychedelics appeared to help many users, Kjellgren found.

    "It seems like these substances not only give relief during the attacks, they can also stop the vicious cycle of recurring episodes of cluster headache. We did not find so many indications for adverse effects either," she said.

    It appeared that the users were not "drug romantic", she said, with no particular interest in discussing the psychoactive properties of the drugs. Other illegal substances such as cannabis were dismissed by users as triggering or worsening their headaches.

    "It was very clearly stated how much of the substance to ingest in order to avoid psychoactive effects and just get relief," Kjellgren said. "It seems like the hallucinations are not essential for the drug to work for the headaches."

    From a neurological perspective, this makes perfect sense, said Peter Goadsby, director of the NIHR-Wellcome Trust King's Clinical research Facility at Kings College London. LSD and psilocybin are chemically very similar to medicines used to treat cluster headaches.

    "The fact that LSD or psilocybin have a useful effect for cluster headache doesn't surprise me in the slightest when you look at the structure. They're naturally occurring chemicals that look very much like the things we already use," said Goadsby.

    "The important thing here is that this is a desperate group of people. Mainstream medicine ought to be listening to what they're saying. This is a cry for help, and we need to invest time in finding better ways to treat people with these problems."


    Right now, studies on cluster headaches strongly suggest that abnormalities in the hypothalamus may be causing the disorder, and research is showing how the psychedelics could be treating cluster headaches by working on the hypothalamus. We already know that deep brain stimulation of the hypothalamus can give relief to some cluster sufferers, and we also have studies showing evidence that LSD and psilocybin both activate the hypothalamus.

    With both being so effective for cluster headaches, we now have more evidence to support the idea of a malfunctioning hypothalamus being the problem, and more evidence that psychedelics show great promise in treating our disease.

    With any luck, the psilocybin studies that are being conducted at Yale this year will prove as effective as a scalpel, and we can do away with some of the brain surgeries currently used to treat cluster headaches in favor of a mushroom.

    One of the biggest things Clusterbusters has proven is that psychedelic therapy for regular everyday people is something that can work quite well. One common debate in the psychedelic community is who psychedelic medicine can work for and how it needs to be administered.

    When you listen to some of the warnings and scare stories on these substances, it makes it seem like they could only work for a select few, and that most people will freak out if given hallucinogens. Over the years with Clusterbusters, the huge lack of freak outs I’ve observed has been a pleasant surprise. Person after person has come to our board with no knowledge and no experience with psychedelics. However, the norm seems to be that with a bit of guidance and a bit of knowledge passed along, they find a successful treatment plan that they can do safely in their own home and achieve results that Western medicine has never given them. While it may not work for everyone, we look forward to the results of the upcoming Yale study, just as we look forward to a day when psychedelics are real, legal solutions for conditions like ours.

    For 20 years now, I have had to deal with getting some kind of headache every day. Sometimes the psychedelic therapy works well enough to get a good five days of pain relief to the point that coffee and cannabis is all that I need. Truth be told, that’s about as good as it gets.

    But this is where the side effects of psychedelics really save me. Psychedelics have easily been the most helpful tool for me in dealing with the headaches I have suffered from most of my life. Even when they do not get rid of my pain completely, they fight the accompanying depression and help me deal with the uncertainty and fear. For me, psychedelics change my perspective on life, from suffering with a disease to living with a disease.

    From all I have seen, the future of cluster headache medicine seems unlikely to come from anywhere but psychedelics. Over the past 20 years, the groundwork for cluster headache drugs and therapies have been tested and proven effective by desperate patients, while most of the medical establishment has hid their head in the sand. It seems like the medical establishment is finally willing to admit these are real therapies. The only thing keeping tomorrow’s medicine from happening today is the strict drug laws restricting research into these psychedelic substances.

    Psychedelics are a powerful medicine, and right now it is completely illegal to use one of the few things that work if you are a cluster headache sufferer. Every day there are people out there denied real options because of drug war propaganda.

    That’s why we need all of you to help us spread the word. Talk to people about the severity of cluster headaches and migraines and talk about the options our government is keeping from us. Talk about psychedelics and the very real lives that hang in the balance as we wait for legal access to our medication.

    I feel that the psychedelic community can and will be much stronger after hearing our stories. We need to take these amazingly effective substances out of the realm of forbidden science and start exploring their untapped potential. Our lives depend on it.

    -Brendan Burns

  3. #3
    Distinguished Community Member Sherman Peabody's Avatar
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    How psychedelics helped me deal with excruciating cluster headaches

    By Giancarlo Ditrapano

    For sufferers like me, mushrooms and 5-MeO-DALT offer relief where traditional medications can't.

    Known also as "suicide headaches," because sufferers have been known to take their own lives, cluster headaches are considered by many to be the most painful condition known to science—described as more painful than broken bones, any degree of dermis burn, and even child birth. Yes—mothers have essentially said, "I would rather eject another small human being from out of my undercarriage rather than have one of those things again."

    They're not migraines—rather, they're more like a series of short headaches that occur in patterns of one or more each day for weeks or months on end (thus the "cluster" designation). I've had them for 25 years, since I was 16. The pain is indescribable, but here I go describing it to you anyway: If you have ever stubbed your toe, then you know how bad that kills. A cluster is like that, except it happens just behind the eye, right in the temple. The pain camps out, throbs there for at least 30 minutes and as long as two hours. A taste of earthly hell.

    Scientists don't know what causes them, and typical painkillers and narcotics usually don't help. Believe me: In efforts to deal with this pain, I've orally ingested, injected, snorted and/or smoked oxycodone, hydrocodone, fentanyl, demerol, dilaudid, cocaine, heroin, codeine, morphine, and more, all to no avail. You get super ****ed up, sure, but the pain is still there, at full strength, almost made worse because the dope just adds an unpleasant weirdness to the scene.

    I've tried dropping dumbbells on my foot in an attempt to displace the pain. I've banged my head against the wall, then the floor, then the wall again. I've slammed bags of ice against my temple, leaving my face reddened and bruised. I've fantasized for hours about sparkling knives and imagined the relief of filleting my temple open like a raw chicken breast, as if the pain would bleed out. Yes, it's that dramatic.

    To put it simply: Treatments are elusive. "These are very hard and very painful headaches to treat," said Dr. Mark Green, director of headache and pain medicine at Mount Sinai School of Medicine, "and the agents that we usually use work sometimes, but they sure don't work all the time."

    Doctor-sanctioned treatments for clusters include Imitrex (an injectable medicine that narrows the brain's blood vessels) and rapid oxygen inhalation. They're good at stopping attacks, but not preventing them. I've tried them, too—but nothing has provided me with even a 100th of the relief that psychedelics have.

    A couple of years ago, I discovered Cluster Busters, a ground that advocates the use of alternative (though, sadly, illegal) cluster treatments. It was founded by Bob Wold, who broke a cycle of clusters using psychedelics in 1998 and felt he had to spread the word. Since starting Busters, Wold said that 95 percent of cluster sufferers he's come across who have been treated with psychedelics never go back to prescription drugs again.

    With thousands of members, Cluster Busters offers a strong online community that helps cluster sufferers seek relief from their condition through psychedelics. The cure they advocate comes down to replacing doctor-prescribed prescription drugs with hallucinogens like mushrooms, LSD, rivea corymbosa seeds, or 5-MeO-DALT.

    There's scant medical proof that they work—most everything we know about how psychedelics treat clusters is anecdotal. One small interview-based study showed promising results, but because psychedelics are hard to refine to medical purity and offer little profit motive for pharmaceutical companies to investigate them, Green said, forming large-scale regular psychedelic studies is difficult. And without them, case reports don't offer enough conclusive evidence that it's psychedelics themselves that are relieving symptoms.

    "I've been doing headaches for more than 40 years, and I've got to tell you, I have story after story of people who say, 'I took this, and it made it go away,' and then, of course, it never held up in the long-term," he said. "I'm not being negative, and certainly I have a number of patients who experiment with mushrooms, grow them, and take various compounds, and some of them report efficacy, but I don't know, and I don't know about their safety either." To restate the obvious: These treatments can be risky, and they haven't been proven by medical science to work.

    But Green also emphasized that "people with clusters have a real, genuine suicide risk," and that he's "certainly understanding and sympathetic that someone who just can't get relief with existing products would be willing to do most anything to get rid of the attacks."

    Personally, shrooms and DALT are what work for me. Three years ago, the first time I dosed on mushrooms instead of reaching for Imitrex, I knew I had found my answer. Instead of feeling like my head was an eggshell that a cluster could crack into at any second, I felt like I had a forcefield around my skull. My life has been shut down annually by clusters, with anywhere from one to seven headaches daily for periods that come once a year and last from one to six months. Discovering a way out of this hell cycle was as awesome as what I imagine seeing an alien or finding God would be like.

    Shroom dosage varies based on how one elects to manage their condition. One can micro dose by putting a small piece under their tongue day as a preventative method. A somewhat larger dose (a stem or two) can be used at the onset of an individual cluster to knock it back. Or, by taking a large dose every seven days, I can "bust" my season of headaches and be free from pain until the next time it comes around. Dosing with 5-MeO-DALT is a different story (but I've found it to be the most effective treatment of all); when I feel a season coming on, I simply take 15 milligrams every five days, and my head will stay clear without experiencing any seriously debilitating trips.

    What's tricky is that because psychedelics interact with prescription meds, you have to make the choice to use one or the other, and because psychedelics become ineffective if taken too regularly, if you get a cluster between doses, you're forced to grin and bear it. But the payoff is worth it.

    I call the time of year in which my headaches come the mean season, and when I'm in the mean season, I am always less than ten minutes away from my home, mostly in my bed, either having a headache or anxiously preparing for one. I can't drink, I can't get high, and I can't **** my boyfriend, because all those things will trigger a cluster. (Oddly, when I feel a cluster coming, I've found I can sometimes divert it by masturbating, though it's hard to kindle a chub when you know you might soon be squirming from unimaginable pain.)

    What's crazy is how long the psychedelic solution has been out there, waiting for me to find it. If you had asked me at one point what was the worst thing I could imagine, I would have said, "Having a cluster while tripping." Funny how the answers are sometimes in the last place we think to look. I've now been pain-free for three years. Unless you suffer yourself, you have no idea just how beautiful that actually is.

  4. #4
    Distinguished Community Member Sherman Peabody's Avatar
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    The citizen scientists using mushrooms to cure their cluster headaches

    By Jennifer Swann
    Jan 31, 2017

    "We can either just live in pain or we can try and fix it ourselves."

    When Tyler Mann first started getting cluster headaches a little over a decade ago, he'd crawl into his bathroom, turn off the lights, shut the door, and scream as loud as he could for up to an hour until the pain went away. Sometimes he'd pass out before that happened. Other times he'd contemplate suicide.

    "I've had headaches where I was literally considering hanging myself from the shower rod," Mann told me. "Literally, I wanted to just wrap a belt around my neck and make it stop, several times. That's why I don't own a gun."

    In the beginning, he'd get the headaches as often as six times per day, for months at a time. His doctors offered no explanation. So, like many people with more symptoms than solutions, he turned to the internet for help. That's when he discovered a Facebook group where thousands of others said they suffered from the same condition—a little-known neurological disease called cluster headaches, for which there is very little research and no known cure. They referred to themselves as "cluster heads," and each was more desperate for relief than the next. Many of them, frustrated with the lack of clinical studies, had turned to extreme methods of treatment.

    According to users of the group, one thing seemed to consistently provide long-term relief: psychedelics like mushrooms, LSD, and DMT, all of which consist of Tryptamine, an alkaloid that is believed to activate serotonin receptors in the brain. The most obvious problem, though, is that all of these drugs are illegal in the United States—scheduled in the same high-risk category as heroin—which means they're far from medically proven, and the self-administered dosing and its results can be wildly inconsistent. For people like Mann, who describes this form of self-medication as "citizen science," the risk is worth it if it means not having to endure debilitating pain and suicidal thoughts on a regular basis.

    "We're basically experimenting on ourselves," said Mann, an Austin-based filmmaker who's worked as a camera operator on shows like CNN's High Profits and TLC's My 600-lb Life. "We're using ourselves as guinea pigs because we don't have any other options. We can either just live in pain or we can try and fix it ourselves."

    Since he started taking psychedelic mushrooms as medicine about three years ago, Mann, now 37, says the cluster headaches have all but come to a halt, occurring something like every year and a half as opposed to multiple times a day. He calls mushrooms a "wonder drug." And yes, even though he's technically ingesting them in the name of science, he still hallucinates every time. "Oh, I trip balls," he said. "You get used to it. It's just like taking a pill."

    Of course, not every cluster headache sufferer wants to break the law or trip balls just to get some relief—and not everyone believes psychedelics will be beneficial to them. The absolute dearth of reliable treatment options is part of the reason Mann has decided to make a documentary about what it's really like to suffer from cluster headaches. He hopes the project, dubbed "Clusterheads" and funded largely using donations from sufferers, will draw more attention to the condition and ultimately help sway the US government to invest more money and resources into studying it.

    Cluster headaches, named for their occurrence in cycles or groups, were first documented in the 18th Century. In a scientific paper, the Dutch-Austrian physician Gerard van Swieten described a middle-aged patient who suffered from the condition every day at the same hour as feeling "as if his eye was protruding from its orbit with so much pain that he became mad."

    The British neurologist Wilfred Harris is credited with publishing the first complete medical description of cluster headaches in 1926. In it, he observed that the attacks could last for anywhere between ten minutes and several hours and might strike patients at the same time every day, recurring for weeks and then disappearing for months at a time (these are now referred to as episodic) or in some cases, every day for years on end (now called chronic). The pain, he wrote, was "likened to a knife being driven in through a point between the outer canthus of the eye and the hair line," far more intense and debilitating than even the most serious migraine.

    "Some people say it's like an ice pick going through their eyeball," Mann told me. But for him, he said, "it's more like somebody drilling into my skull through my temple and scraping around in the inside of my skull and the back of my eye."

    The number of people who suffer from cluster headaches is still relatively unknown. The World Health Organization estimates that cluster headaches affect fewer than one in 1,000 adults, often developing after the age of 20 and occurring disproportionately among men. That's roughly in line with a commentary published in the Journal of Neurology & Stroke in 2015 estimating that 400,000 people in the US and 7 million people worldwide were sufferers.

    Still, those numbers are likely underreported since it's not uncommon for patients like Mann to go years without a confirmed medical diagnosis. "There's thousands of other people who are just like me who have this condition who don't know what it is," Mann said. "Some of them have probably committed suicide because of it. They just didn't know what it was and were living in pain and didn't know how to treat it."

    For all the pain and suffering that comes along with it, cluster headaches remain largely a mystery to the medical community today. Doctors still don't know exactly what causes it or why, and supposedly preventive measures such as deep brain stimulation—or surgically implanting the equivalent of a pacemaker in the brain—remain experimental at best and expensive and ineffective at worst.

    Meanwhile, treatments like oxygen therapy, which are believed to abort the headaches essentially by inducing hyperventilation through an oxygen mask, are only short-term remedies. Plus, they can be costly, Mann says, with few if any insurance companies covering it specifically as a treatment for cluster headaches.

    "Getting mushrooms is actually easier than getting oxygen, believe it or not," he said.

    But it doesn't have to be that way. In the last several years, grassroots groups like ClusterBusters—a nonprofit that was started in the early 2000s by sufferer Bob Wold after he discovered hallucinogens had helped his cluster headaches—have joined an annual advocacy event called Headache on the Hill. At the event at the US Capitol next month, the so-called cluster headache sufferers will meet with members of Congress to lobby for more research and funding through the National Institutes of Health, which they believe has long overlooked cluster headaches as a serious nerve condition.

    Part of the problem is that "it's not a public-facing disease," Mann explained. "It's very much in the closet." Even the name of it is particularly misleading, or at least extremely understated. If a regular headache caused by a hangover or allergies is "like getting a paper cut on your finger," he says, then "a cluster headache is like sawing your arm off with a rusty saw with no anesthesia."

    So far, progress has been slow. Sufferers like Mann expect an uphill battle with the Trump administration, which may seek to roll back marijuana legalization at a time when scientists are finally started to study the medicinal benefits of hallucinogenic drugs. But there are small victories worth celebrating: A landmark 2006 Harvard University study, for example, showing that LSD and psilocybin—the psychedelic compound found in mushrooms—had benefited sufferers of cluster headaches. The study of 53 patients, which Clusterbusters took credit for as a result of their lobbying, found that 22 of 26 psilocybin users reported that the drug had aborted their headache attacks.

    "It's life changing, honestly," said Mann. "Without the psychedelics, I don't even know if I would still be here on this Earth, and I have the people in ClusterBusters and the Facebook support group [to thank] for that."

    As they push to be taken seriously, "cluster heads" all over the world have banded together like a ragtag group of skull-rattling outsiders, sometimes with no else to rely on but each other and their own amateur insights. In Facebook groups, on message boards, and at an annual conference, they share their own stories of pain, experimentation, and recovery—one mushroom trip at a time.
    Last edited by Sherman Peabody; 10-06-2017 at 01:42 PM.

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