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Bob Wold of ClusterBusters

How psychedelics helped me deal with excruciating cluster headaches

by Giancarlo Ditrapano | VICE

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

Known also as "suicide headaches," because sufferers are 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, all to no avail. You get very high, 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 have sex with my boyfriend, because all those things will trigger a cluster.

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.

 
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Why I take psychedelic mushrooms for my health

by A. Khan | Refinery 29 | 10 Dec 2015

Earlier this year, I came across an Alternet article touting the benefits of microdosing, and then an insanely helpful Reddit forum devoted to it. I was intrigued. According to these (admittedly biased) sources, people were exploring microdosing for many reasons, from increasing creativity to decreasing anxiety. My main goal was to see if I could improve my focus, and if dosing could help rid me of my crippling migraines. I’ve had migraines for over 30 years, have tried every remedy you can think of (beta blockers, antidepressants, Botox, acupuncture, Topamax, cafergot), and my neurologist has all but waved a white flag at me. My most recent drug regimen involved barbiturates and muscle relaxers taken at the first sign of a migraine — plus lots of moaning and groaning.

When I mentioned my headaches to Dr. Fadiman, he pointed me to ClusterBusters, a forum for people who self-administer relatively large doses of psychedelics — typically LSD — in an attempt to relieve their cluster headaches. Cluster headaches, however, are distinct from migraines. But there was also enough anecdotal information online about migraine sufferers getting relief from mushrooms that I had to give it a shot. What did I have to lose? I finally got to try out my microdosing obsession when my friend John mentioned he had ‘shrooms and was experimenting with microdosing, too.

I admit I was beyond trepidatious about my first dose. I hate tripping. The only two times I previously tried ‘shrooms were in the late '90s; I felt certain there were ghosts in the room and that someone was after me, and then I became fascinated with the window, which forced my friends to take me outside for the duration. Hello, after-school special! So this time around, I wasn’t sure what to expect. Would I freak out on my dog? Was I going to vomit? Fuck it, there was only one way to find out. I debated powdering my mushrooms, weighing the powder precisely, and then putting it into gel caps, as suggested by the Reddit forum (because potency in shrooms varies), but the truth is: I’m lazy as hell. So I cut off a tiny chunk, washed the little ‘shroom piece down with filtered water, and then waited.

Pretty soon, I felt really good and happy — think that buzzy joy you get from being stoned, but minus the stoned part. Dr. Fadiman, who studied LSD prior to its ban in 1966, has spent years unofficially researching and studying microdosing. In 2010, he put together an all-volunteer study group in which subjects self-administered psychedelics according to his protocol and reported their results to him. Although it wasn’t a controlled study, the anecdotal results were interesting, if vague. “It improves your overall capacity," Dr. Fadiman explains. "It seems to help a huge number of conditions” including anxiety, depression, and even stuttering.

After his initial volunteer group, people continued to send in reports, which Dr. Fadiman receives to this day from all over the world. While the medical-establishment jury is still out on the use of psychedelics, study of the substances has experienced a resurgence in recent years. Psychedelics are being studied in controlled settings for the treatment of depression, anxiety in cancer patients, alcoholism, end-of-life therapy, cluster headaches, and PTSD — and they're being used in psychotherapy. Of course, shrooms and their psychoactive ingredient (psilocybin) are schedule 1 substances, meaning that they are considered to be highly addictive and have no accepted medical value. That makes it very illegal to take these drugs. It also makes it difficult for researchers to study them, which is why there’s still so much about psychedelics that we don’t know.

Partly for that reason, some experts don’t think psychedelics, even in small amounts, are advisable — after all, there isn’t any formal scientific evidence or controlled trials on microdosing. “I would not encourage people to try this,” says Matthew Johnson, PhD, a professor in the Behavioral Pharmacology Research Unit in the Department of Psychiatry at Johns Hopkins University School of Medicine. “From a scientific standpoint regarding what we know about psychedelics and their effects, it is true that the relative risks would be less, on average, when there was a lower dose, [but] taking any drug is never ‘safe.’”

Dr. Johnson points out that it’s difficult to control the exact micro-dose and its potency, which makes it dangerously easy to take too much and end up, say, tripping at work. He also notes that these drugs can lead to anxiety, panic, and potentially dangerous behavior — and for those predisposed to psychosis, they can increase the risk for psychotic episodes. Still, Dr. Johnson admits that microdosing is “a fascinating topic. It may be that low doses of such compounds might have promise for mood or other disorders, given what we know about their basic pharmacology. It would be great to see controlled trials on this.”

During my admittedly unscientific self-experiment, I spent the day I’d taken my dose doing laundry, unpacking from my recent move, walking the dog, working on revisions for my book, and giving directions to tourists when I went for a walk. In short, I felt great. There were no dancing elephants and no going to the mirror and seeing a cat face instead of my human face like that one time in 1996. As I’ve continued to use the protocol over the past six weeks, a pattern has emerged. On day one, I get a lot done and feel fantastic. I want to take my dog on really long walks, get my to-do list finished, and even take all my conference calls. I can think pretty clearly, though I do feel different. It’s like being high but not being high at the same time. On day two, I just feel generally a bit happier. And by day three, I’m back to “normal.” On day four, I usually microdose again.

The only downside I found was when I took too high a dose; the next day, I felt like I had a hangover. After that, I dialed back my dosage, from about the size of my pinky nail to half that (very precise, I know), and I’ve stuck with that since. Generally, while I’m on the protocol, I feel less stress, my friends keep telling me I look radiant (“Thanks! It’s the mushrooms”), and here’s the part that really matters: My head doesn’t hurt while I’m dosing. If I have a slight headache, and I generally have one when I wake up, it disappears after I take my morning microdose. Instead of spending the day waiting for it to come back, I feel pretty great, and at most, take some Tylenol later on. On day two, the headache may or may not be back.

So while the pain relief doesn’t last, even one day is good for me. However, I’m not microdosing exactly according to the every-four-days protocol, because of my headaches. If I wake up with a full-blown migraine, I’ll take a strong painkiller, and I don’t want to mix in mushrooms in as well. I had a full week of intense headaches recently, so no microdosing. That’s one thing I like about mushrooms: If I don’t want to dose one week, there’s no detox effect. I can stop — no mess, no fuss. There has been no proven physical addiction to psychedelics like mushrooms or LSD (although you can build up a tolerance, hence the protocol). I don’t jones for the next dose; I can take it or leave it. I’m not saying microdosing is for everyone, and obviously not all experts are on board. But I’m into my experiment so far. It’s resulted in fewer headaches, more energy, and general stress relief. In the end, it’s about what works for you — and why you’re microdosing. The entire experience has opened my eyes and mind up to a new world of possibilities.

*From the article here:
 
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Suicide headaches driving sufferers to try psychedelics*

by Martha Henriques | International Business Times | 22 Sep 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 meds to alleviate this intense pain don'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 doesnt 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."

*From the article here :
http://www.ibtimes.co.uk/suicide-hea...p-pain-1640485
 
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Psilocybin and LSD in the treatment of Cluster Headache*

CLUSTERBUSTERS

This treatment, commonly referred to as ‘busting’ is a way of using hallucinogenic tryptamines such as psilocybin to relieve cluster headache. Many cluster headache sufferers, affectionately called “Clusterheads,” find that small, sub-hallucinogenic doses of these tryptamines can end cluster headache cycles and prevent entire cycles from starting.

It may seem extreme to resort to hallucinogens, but a cluster headache is nothing if not extreme. It’s been called the worst headache, or pain of any kind, known to medicine. It is also called suicide headache, as suicide is known as a thankfully-rare symptom. Many clusterheads facing this beast call it just that: the Beast.

Many medications are effective to some degree. High-volume pure oxygen, or triptans such as Imitrex injections are commonly used to relieve individual attacks. There are many treatments to prevent attacks, including verapamil, lithium and steroids; these vary in effectiveness and severity of side effects.

Tryptamines may be more effective for preventive use, and if used carefully produce fewer side effects by far. For aborting attacks, they rival oxygen in safety and effectiveness.

Tryptamines have their dangers. Aside from being illegal in most countries, they are powerful drugs and must be respected. Pregnant women and people prone to mental illness should not use tryptamines. While it is not necessary to experience a psychedelic trip in order to treat cluster headache, a trip remains a possibility, and one should be prepared.

These pages are rundown of the protocols and procedures being developed for future research. These are not rules for treatment, rather a discussion of ideas and experiences from those using this method and the intention is to foster further research and development. There is much yet to learn and understand – and much to discuss with your physician – before attempting this treatment.

Index of pages:

Warnings, the psilocybin mushroom, LSA seeds, playing well together, shutting the door, the dosing method, ways to take, coping, oxygen, the experience, keeping track, how well does this work, other tryptamines.

WARNING – TRYPTAMINES ARE NOT FOR EVERYONE
  • Do not use tryptamines if you are pregnant, they can cause miscarriage.​
  • Do not use tryptamines if you suffer from or are prone to mental illness.​
  • Take tryptamines only in the proper mind set and physical setting.​
  • Tryptamines have physiological effects.​
  • Tryptamines are illegal.​
  • We are not doctors. This is not medical advice.​
  • Take no medication and use no treatment without consulting a physician.​
  • Obtain a through and accurate diagnosis from a knowledgeable doctor or neurologist 
before assuming you suffer from cluster headache.​

The Substances

Psilocybin and lysergic acid amide (LSA) are the hallucinogens most used in this method. Both belong to the tryptamine family of chemicals. LSD is another tryptamine effective against clusters, and there may be others, including a relative of LSD that causes no hallucinogenic effects – research is ongoing.

There are natural sources for some tryptamines: psilocybin can be found in the psilocybe family of “magic mushrooms” or “shrooms.” The seeds of certain flowering vines contain LSA. Since most tryptamines are illegal, using natural sources is safer, more reliable and avoids involvement with criminal elements.

The Interaction Problem

Unfortunately, many of the medications used to treat cluster headache tend to interfere with the effectiveness of the tryptamines. A period of “detoxification,” under a doctor’s supervision of course, is needed to clear these drugs from the system. See PLAYING WELL TOGETHER

Imitrex and other triptans, steroids such as Prednisone, and many other medications can interfere. Some cluster medications can unpredictably increase the psychedelic effects of tryptamines. There are many medications where little is known, especially those taken for other conditions.

There are effective treatments to use during the “detox” period. Breathing high levels of oxygen through non-rebreather masks is very effective. Large amounts of coffee, or taurine energy drinks drank quickly are favorite emergency treatments. And there are the physical coping techniques: ice packs, hot showers, cold water, hard exercise, intense swearing and any number of strange and extreme things clusterheads do to battle the Beast.​

The Dosing Method

Clusterheads use tryptamine substances in a variety of ways. During a cycle, many take a small to moderate dose of psilocybin or LSA every five days or so, until the cycle stops. In some cases, only two or three doses are needed, others may find they must dose roughly once a week or every two weeks.
Better yet, Clusterheads have found they can take a few small doses before a cluster headache cycle is expected to start, and find the cycle never arrives, or is greatly reduced. Some have had success using even smaller doses to stop individual cluster attacks.

For more informations, see THE DOSING METHOD.​

The Experience

The idea here is to experience the maximum cluster relief with a minimum of psychoactive effects. A moderate dose of psilocybin might cause as much high as a couple of beers, though it is a different kind of high. Small doses can be effective even though the effects are slight to none. With LSA seeds, most people will experience little or no side effects at cluster treatment doses – some report drowsiness, some nothing at all. However, LSA can cause significant psychedelic experiences in some people.

While small doses are enough to treat clusters, tryptamines are powerful hallucinogens and must be used with caution. Those with a tendency toward mental illness should avoid tryptamines or any other hallucinogen. The plan is to minimize the high, but also to prepare for any psychedelic experiences that might come along. Every person is different, and every natural substance – mushroom or seed – may differ significantly in potency.

There is promising research involving a tryptamine that does not cause significant psychoactive effects, and if it confirmed, could enable many more people to consider this method. To learn more, read HOW WELL DOES THIS WORK?

For more on the experience of using tryptamines to treat clusters, see THE EXPERIENCE

The Relief

The effect of tryptamines on clusters can seem like magic at first – surprisingly fast and complete. But it’s not magic, it’s neurochemistry, and it’s not over until the proverbial opera performance ends.

Everyone is different, but there often is an immediate sense of relief, followed within a few hours or a day or two, by the return of cluster attacks. These “slap-backs” can be abnormal attacks – shorter or longer than usual, or more painful or less painful than usual, and coming at odd times. There might be a few or several but these attacks then may begin to fade, at least for a while.

Symptoms may gradually return or continue at a low level, and a repeat dose is needed. For many, two or three doses can end a cycle. Some find they must repeat the dose every week or two, gradually stretching out the time between doses until the cycle ends.

Tryptamines don’t seem to work on some people. For others it is extraordinarily effective. One sufferer of chronic cluster headaches reported being pain-free for years after a single dose. Another reported no relief at all after several relatively strong doses. For more on the results of this treatment see SO HOW WELL DOES THIS WORK?: Works Well.

The same treatments and coping methods used in the detox period can be used for these “slap-back” attacks and residual symptoms. Oxygen seems to be particularly effective when using the tryptamine treatment. For more on this, see COPING: BUSTER-FRIENDLY TREATMENTS.

Be sure to read the OXYGEN INFORMATION page. Oxygen is a lifesaver for many cluster headache sufferers.​

The Results

In 2006, Dr. John Halpern and Dr. Andrew Sewell reported to the National Headache Foundation Research Summit on their case review study, later published in the journal Neurology. They reviewed reports from Clusterheads and found over 80 percent reported significant relief using tryptamines.

These results confirmed several hundred anecdotal reports of treating cluster headaches with tryptamines. A review of these reports shows about 67 percent of chronic cluster headache sufferers and about 75 percent of episodic sufferers report significant relief. These reports were mostly collected from Internet discussion groups and internet survey forms; they aren’t scientifically valid, but provide dramatic testimony from clusterheads finding relief. More formal research is in the works, see HOW WELL DOES THIS WORK?

The Theory

We don’t know how this works. The current theory is one of SHUTTING THE DOOR. There is informed speculation on how such small amounts of substances can overcome such large headaches, but there is much to be learned. It’s serious neurology, of course. Some ideas seem to center on the way tryptamines constrict blood vessels; others involve the way the indole-ring molecule of the tryptamines fits into seratonin receptors. Particularly interesting is the way small, infrequent doses can have long-lasting effects and seem to work best if taken at intervals of several days.

Of course, it is not magic even if it seems like it, and serious scientific research into the mechanism of both cluster headache and tryptamine effects on the brain would go a long way toward eliminating much massive pain.

*From the article here :
 
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Psychedelic mushrooms cured my cluster headaches

It’s 5:30 in the morning on a Friday, and I’m rolling a massive joint with one eye open. On my desk is a fresh cup of green tea with two tea bags, and tossed onto the bed is my phone with several Safari pages open to the term cluster headache. I am in a manic tailspin of despair. Pretty soon, the headache will take the vision in my right eye. (It’s already seized my left.) Soon after that, I’ll be utterly crippled. I focus intently on rolling the joint.

When the task is complete, I do several things in swift succession. I grab the tea bags and press out the remaining hot liquid. I lie flat on my back and swing one tea bag onto each of my closed eyelids. Trying hard not to shift them, I take the rolled joint to my lips, light it blind, and take tiny little puffs.

By now it is 5:45 a.m., I am smoking a joint in my underwear as the sun comes up, and I have two bags of hot tea weeping onto my closed eyes. All I can think about is the agony in my head. For what must be the hundredth time this month, I am acutely aware of how unhinged I’ve become.

Three or four hits of the joint later, I stub it out on my desk. It has done nothing, and the taste of the weed is making my nausea worse. I remove the bags, hoping they’ve made my eyes less puffy. I’ve cried every day for the past three weeks. Even for a particularly emotional person, this is too much. I look battered.

I keep my eyes closed, cry some more, consider suicide, twist and turn, press my hands to my forehead with such intensity that I worry I’ll crush my own skull, and eventually, finally, I fall asleep. I wake up two hours later to my alarm demanding that I get ready for work.

I have never felt more exhausted and powerless. And I know tomorrow I’ll go through it all again.

***

If your right arm goes numb, some Googling will probably lead you to believe that you’re having a stroke. If you are having shortness of breath, the internet medical community will tell you you’re dying. Misdiagnosis is a common consequence of haphazardly looking up symptoms of illnesses, but occasionally this practice can save people’s lives, or at least greatly reduce pain. When there is no hope to be found in professionals, online forums written by people who have visited your own private hell are sometimes all you have.

I endured a decade with debilitating headaches, and it wasn’t until this year, when the situation had gotten dire, that I started researching what I felt were disparate symptoms. Inevitably, I began to find things like this:

The headaches come in cycles, sometime multiple times a day, and an attack can last for up to 90 minutes. It’s debilitating to the point where cluster headache patients cannot function normally in society — how do you tell your boss you need to take an hour off while you suffer through excruciating pain? Modern medications — opiates, steroids to neuro-implants — are, at best, minimally effective. There is no known cure. According to a report published by MAPS, the suicide rate for those with the disease is 20 times the national average.

And this:

I'm a 26 year old male and I've been suffering from this evil condition for 13 years, and I just have to say it is such a relief just to find other people who know about it. I thought I was cursed or something for the longest time. Nobody else in my life understands. I can almost hear peoples judgments when I’m having an episode and can’t function, and all I can say is “sorry, I have a headache.” It just doesn’t cover it. Thank you for spreading awareness and being supportive.

Jerry Callison, a lifelong sufferer of what I learned were called cluster headaches, told me on the phone that when his daughter was near 6 years old, she drew a picture of him crying in his La-Z-Boy while she drew herself crying in a corner behind him. “[Cluster headaches have] broken up families, relationships, and marriages because the partner just didn’t want to go through the drama and everything that goes with it.” He continued: “One of the biggest things that cluster [sufferers] go through is the feeling of being alone. We just feel like we’re the only ones.”

Because only one in 1,000 people suffers from cluster headaches, the forums and sites to which cluster patients post are an incredibly close-knit and supportive group of people. When I reached out to users on a particular CH forum for help with this story, I was flooded with emails. I spoke on the phone with an older man who had been suffering from CH for over 20 years. He explained with resignation that cluster headaches “literally make it impossible to live your daily life.”

The forums and message boards and blog posts described what I was going through to such a precise degree that I felt like I’d found a second family. My doctors, who had historically told me that I suffered from regular migraines or headaches connected with my menstrual cycle (at one point I was told they would be more or less cured by taking birth control), had misled me. This wasn’t necessarily their fault, given the short bursts of time the cluster headaches lasted — two- to three-month periods. But the severity was so intense that there had to be something I was missing. There had to be a rock I’d left unturned.

Many refer to cluster headaches as suicide headaches, and I was starting to feel like I was running out of time to cure mine. But then, with the help of one of these specific forums, I found the miracle drug.

***

In 2006, the medical journal Neurology published a study titled “Response of cluster headache to psilocybin and LSD,” wherein 53 cluster-sufferers were interviewed about the use of “magic mushrooms” and LSD to treat or eradicate their illness. Over 50% of the subjects studied revealed that one dose of psychedelics caused total cessation of their headaches, while about a quarter said that the drug aborted a headache mid-attack. Though the study examines only a very small population of cluster-sufferers, its results are matched and furthered all over the internet in personal testimonies. Researching the efficacy of psilocybin treatment for cluster headaches is impossible in the United States because of its Schedule I status, but that doesn’t mean sufferers can’t stage their own investigations.

One of the best forums on the web for cluster-headache sufferers — especially those who are interested in using psilocybin as a treatment — is Cluster Busters. Founded by Bob Wold, a self-described “cluster head,” CB is a nonprofit organization that provides resources on the use of psilocybin as a method to cure or treat cluster headaches, a.k.a. “busting.” The forums require a username to log in, but once there, you’ll find an entire world of people who have been helped by mushrooms. One contributor wrote that he has been taking a preventative dose every 60 days for over four years now, and he’s spent “the vast majority of the last four years completely pain-free.”

People visit Cluster Busters with questions about growing mushrooms, how to properly dose themselves, alternative treatments outside of psilocybin, and pleas for support during their cycles. When you’re deep into certain threads, it can be difficult to grapple with the fact that this alternative treatment has worked for so many people, yet so little can be done to study it.

Researchers believe that cluster headaches originate in the hypothalamus (the part of the brain associated with our circadian clock), and when a sufferer is dosed with mushrooms, the active psilocybin manages to slow blood flow to the area, preventing the onset of a cluster attack. But for obvious reasons, all that doctors can do is suggest this treatment, and then in the meantime prescribe pills that might not have much effect.

Around the time of my cycle this year, the one that nearly drove me to suicide, I spoke on the phone with Dr. Jason Rosenberg, the director of the Johns Hopkins Headache Center, about how he treats patients who come to see him with cluster-headache symptoms.

“I’ve not had any of my own patients attempt to commit suicide, but the very first question when I’m dealing with a cluster patient is to ask if they have a gun at home, is the gun locked up, who has the key, do they have a safety, is it registered with bullets in it,” he told me. “People do stupid things during their cluster headaches; they may not actually mean to kill themselves, but they just want the pain to stop.”

One of the biggest problems with CH, Rosenberg explained, is that so many people are misdiagnosed and given medication that would never work on a cluster. I’d been put on everything from Imitrex to Topamax to — during a particularly tough period — Vicodin, just to take the edge off what was going on behind my eyes. “I think the most important thing for patients to do is find a headache subspecialist rather than a general neurologist and get on one of the cluster headache websites, and in a day they will know more than most general neurologists,” Dr. Rosenberg said.

Would he tell a patient that there’s a chance magic mushrooms could help them? Is that even allowed? Yes and no. “When I first see a patient, I give them the range of options,” he explained to me. “I say, ‘Look, here are the standard options. They sometimes work great, they sometimes don’t.’ If those don’t work, I say that here are some trials going on, that some patients are resorting to hallucinogens, and that some of them do well and some don’t. That’s basically all I can say.” In one of the crazier things I’d heard about cluster headaches since I began my trip down the rabbit hole, Dr. Rosenberg explained that right after the collapse of Silk Road, the former online black market for illegal drugs, he had an influx of his patients desperately trying to reach him to be put on other, legal medications that were not, he presumes, coming from the dark net.

Those other medications do exist. Many sufferers are helped by hooking themselves up to oxygen tanks during attacks; others have found steroids can be effective. There is never enough funding put into rare diseases to provide a range of potential treatments, Dr. Rosenberg told me, but there are a few trials that are picking up momentum. One option sounds eerily like medicine of the future: “For chronic cluster, a small little gizmo gets implanted under your gum to a wire that goes up to a cluster of nerves behind the nose, and during a cluster headache, you can hold this little remote-control gadget up to your face and that will turn off the cluster headache,” Rosenberg explained. “The initial results look like if you do that repeatedly you end up with fewer headaches over time, so not only will it treat individual headaches, but it will reduce the number of headaches you end up getting.”

https://www.thecut.com/2015/12/psych...headaches.html
 
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Yes, migraines and cluster headaches can be treated with psychedelics, but you should make sure they are actually migraines or cluster headaches, first.

Typically, people go to a doctor and are diagnosed as having migraines or cluster headaches. By then, they are usually fed up, and that leads them to alternative methods like psychedelics. Following are some resources:​

https://clusterbusters.org/treatment...ster-headache/
http://www.sciencemag.org/news/2011/...cide-headaches
http://reset.me/story/psilocybin-and...ter-headaches/
http://www.thedailybeast.com/article...chedelics.html
http://www.alternet.org/story/102400...ed_my_headache
https://www.erowid.org/plants/mushro...medical1.shtml
http://www.bioedonline.org/news/natu...elp-headaches/
 
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Response of cluster headache to psilocybin and LSD

Andrew Sewell, John Halpern, Harrison Pope

The authors interviewed 53 cluster headache patients who had used psilocybin or lysergic acid diethylamide (LSD) to treat their condition. 22 of 26 psilocybin users reported that psilocybin aborted attacks; 25 of 48 psilocybin users and 7 of 8 LSD users reported cluster period termination; 18 of 19 psilocybin users and 4 of 5 LSD users reported remission period extension. Research on the effects of psilocybin and LSD on cluster headache may be warranted.

Cluster headache, often considered the most painful of all types of headache, affects predominantly men (0.4% vs 0.08% of women) and typically begins after age 20 years. The disorder is categorized as either episodic, occurring for 1-week to 1-year periods, interspersed with pain-free remission periods, or chronic , in which the headaches occur constantly for more than a year with no remission longer than 1 month. Ten percent of episodic cluster headaches ultimately evolve into the chronic form, and these are termed secondary chronic. In standard descriptions of cluster headache, an attack refers to the actual paroxysm of pain, a cluster period refers to a period of time when attacks occur regularly, and a remission period refers to a prolonged attack-free interval. Oxygen and sumatriptan are the mainstays of acute abortive treatment, whereas verapamil, lithium, corticosteroids, and other neuromodulators can suppress attacks during cluster periods. No medications are known to terminate cluster periods or extend remission periods. The effects of the ergot alkaloid derivative lysergic acid diethylamide (LSD) and the related indolalkylamine psilocybin on cluster headache have not previously been described and may include such properties.

Our results are interesting for three reasons. First, no other medication, to our knowledge, has been reported to terminate a cluster period. Second, unlike other ergot-based medications, which must be taken daily, a single dose of LSD was described as sufficient to induce remission of a cluster period nd psilocybin rarely required more than three doses. Third, given the apparent efficacy of subhallucinogenic doses, these drugs might benefit cluster headache by a mechanism unrelated to their psychoactive effects.

Several limitations of this study should be considered. First, it is subject to recall bias, because it relies primarily on participants’ retrospective reports. However, 6 participants provided detailed headache diaries that corroborated their recall. In addition, 3 of the 53 participants tried psilocybin for the first time subsequent to consenting to participate in the study but before being questioned; 2 reported complete efficacy and 1 reported partial efficacy, a prospective response rate consistent with our retrospective findings.

A second consideration is the possibility of selection bias, in that individuals with a good outcome may have been more likely to participate. Recruitment over the Internet also selects for younger, more educated, and more motivated subjects, likely leading to increased reported efficacy.

Third, participants were not blind to their treatment, raising the possibility of a placebo response. However, cluster headache is known to respond poorly to placebo; controlled trials have shown a placebo response of 0% to prophylactic medications such as verapamil, capsaicin, and melatonin, and less than 20% to abortive medications such as sumatriptan. Therefore, it seems unlikely that we would have found more than 50 cases of apparent response to psilocybin or LSD through placebo effects alone.

Our observations must be regarded as preliminary, in that they are unblinded, uncontrolled, and subject to additional limitations as described above. Therefore, our findings almost certainly overestimate the response of cluster headache to psilocybin and LSD and should not be misconstrued as an endorsement of the use of illegal substances for the self-treatment of cluster headache. However, given the high reported efficacy for this notoriously refractory condition, it is difficult to dismiss this series of cases as entirely artifactual. Further research is warranted.

http://www.maps.org/research-archive...ll_22779_1.pdf
 
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Could psilocybin replace migraine medications like Rizatriptan?

I used to have migraines that would not go away for a 5-7 days at a time, and would happen once every few months. I used to often get headaches that were not as painful as a migraine. In my particular case, the migraines I had were only ever in one side of my head, which the migraine would pick at random.

For those of you who are unaware of what a migraine is, or have heard the term but are unsure of its true nature, lets take a peek into what a migraine is.

Migraine Headache Symptoms, Relief, Auras, Types & Medications also details the nature of migraine headaches.

What is a migraine headache?

A lot of people use the term migraine to mean any kind of severe headache. A migraine is a the result of specific neurological changes within the brain. These changes lead to the pain felt with migraine headaches.

Migraines are exacerbated by sound, light, sometimes smell. Nausea and vomiting are not uncommon. Sometimes migraines involve only one side of the head. Migraines can be described as throbbing and pounding headaches which are made worse by sensitivity to light and sound. The Migraine Research Foundation has written a illuminating piece here.

In my personal experience, microdosing psychedelics of a particular kind keep migraines at bay, and like prescription medication, can even break the most painful migraines in a matter of hours. The cause of migraines is yet to be understood.

Microdosing and migraines

Sub-perceptual doses of psychedelics seem to keep migraines at bay.

My father is a psychiatrist. Once when I had a migraine which lasted for a week. I asked my father for something which might help. He informed me of Rezatriptan. When I heard the name, something clicked in my mind. Triptan? Interesting. After taking the Rezatriptan, the migraine was gone in about an hour, never to return again, yet. This intrigued me so much so that I started to do a detailed analysis of the pharmacology of the drug and noticed something peculiar. The molecular structure of Rezatriptan is rather similar and almost identical to Serotonin, Psilocybin, Psilocin, DMT, LSD etc. (LSD contains the moiety of both Dopamine and Serotonin).

More here: Microdosing Psychedelic Mushrooms and Migraines

Migraine medications compared to psychedelics

According to Wikipedia, Rizatriptan was sold as Maxalt, which is a 5-HT1 receptor agonist. Rizatriptan is an FDA-approved drug to treat migraines and cluster headaches.

Psilocybin which is dephosphorylated to psilocin is a partial agonist for many serotonergic receptors. Psilocin is known to bind to 5-HT1A, 5-HT1D, and 5-HT2C.
"Rizatriptan and Psilocin both agonize 5-HT1D at blood vessels and nerve endings in the brain." The molecular structure of Rizatriptan, Triptans (family), and psychedelic tryptamines is very similar.

Serotonin is a monoamine neurotransmitter which regulates many primary functions in the brain and gastric system. Serotonin is associated with mood regulation, sleeping, and digestive health. Serotonin is closely related to adequate functioning of the mind and body.

Psilocin or 4-Hydroxy-N,N-dimethyltryptamine is the metabolite of Psilocybin (the active chemical in magic mushrooms). Psilocin is a seratonergic agonist and binds to 5HT receptors.

Rizatriptan is said to work by narrowing blood vessels in the brain, stopping pain signals from being sent to the brain, and blocking the release of certain natural substances that cause pain, nausea, and other symptoms of migraine.

Here is a study published by the American Academy of Neurology about a Response of cluster headache to psilocybin and LSD.

The authors interviewed 53 cluster headache patients who had used psilocybin or lysergic acid diethylamide (LSD) to treat their condition. Twenty-two of 26 psilocybin users reported that psilocybin aborted attacks; 25 of 48 psilocybin users and 7 of 8 LSD users reported cluster period termination; 18 of 19 psilocybin users and 4 of 5 LSD users reported remission period extension. Research on the effects of psilocybin and LSD on cluster headache may be warranted.

https://www.psychedelicsdaily.com/bl...for-migraines/
 
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LSD and cluster headaches


by Reilly Capps

Three years ago, when Patrick Hall was 49, he put a revolver to his head and pulled the trigger.

Hall suffers from cluster headaches. They're also called "suicide headaches" because the elected death rate among sufferers is 20x the average. Trying to stay alive, Hall had tried virtually every legal medicine for the headaches including sumatriptan, lidocaine, verapamil, corticosteroids, lithium, morphine and others. Finally, he'd had enough.

The gun, though, jammed. He slumped to the ground, overcome with grief, fear and shame.

Today, Hall is alive, sitting at a table in a wing joint in a strip mall on the edge of Denver, where a bustling server delivers more chips and salsa, and a Rams football game plays on the TV overhead.

As he tells the story of his suicide attempt, his eyes fill with tears. He hugs himself as his body shakes. He has a hard time getting the words out. What saved him? "This medicine," he says. And he pulls, from his inside jacket pocket, a blue glass vial full of a clear liquid that sloshes when shaken. He hands it across the table. "LSD," he says. "LSD really helps."

Hall takes LSD about once every two or three months, putting on his tongue a standard dose of about 125 micrograms. It's given him his most pain-free year in the 31 years hes had the headaches.

"A 2006 study shows that LSD and psilocybin breaks cluster headaches better than anything else. The next best treatment is a pharmaceutical, prednisone, which keeps cluster headaches away 45 percent of the time. LSD did so 88 percent of the time in the study."

http://www.therooster.com/blog/im-ti...lth-depends-it
 
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The citizen scientists using psilocybin to cure their headaches

by Jennifer Swann | VICE

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 "clusterheads," 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 State, scheduled in the same high-risk category as heroin, which means they are 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 are 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. "You get used to it. It's just like taking a pill," he said.

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 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 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 are 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 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, clusterheads 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.

https://www.vice.com/en_ca/article/p...ster-headaches
 
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Ketamine may help treat migraine pain unresponsive to other therapies

Ketamine, a medication commonly used for pain relief and increasingly used for depression, may alleviate migraine pain in patients who have not been helped by other treatments,
suggests a study being presented at the ANESTHESIOLOGY 2017 annual meeting.

The study of 61 patients found that almost 75 percent experienced an improvement in their migraine intensity after a 3 to 7 day course of inpatient treatment with ketamine. The drug is used to induce general anesthesia but also provides powerful pain control for patients with many painful conditions in lower doses than its anesthetic use.

"Ketamine may hold promise as a treatment for migraine headaches in patients for whom other treatments have failed," said study co-author Eric Schwenk, M.D., director of orthopedic anesthesia at Thomas Jefferson University Hospital in Philadelphia. "Our study focused only on short-term relief, but it is encouraging that this treatment might have the potential to help patients long-term. Our work provides the basis for future, prospective studies that involve larger numbers of patients."

An estimated 12 percent of the U.S. population suffers from migraines, recurring attacks of throbbing or pulsing moderate to severe pain. A subset of these patients, along with those who suffer from other types of headaches, do not respond to treatment. People with migraines are often very sensitive to light, sound and may become nauseated or vomit. Migraines are three times more common in women than in men.

Researchers reviewed data for patients who received ketamine infusions for intractable migraine headaches, migraines that have failed all other therapies. On a scale of 0-10, the average migraine headache pain rating at admission was 7.5, compared with 3.4 on discharge. The average length of infusion was 5.1 days, and the day of lowest pain ratings was day 4. Adverse effects were generally mild.

Dr. Schwenk said while his hospital uses ketamine to treat migraines, the treatment is not widely available. Thomas Jefferson University Hospital will open a new infusion center this fall that will treat more patients with headaches using ketamine. "We hope to expand its use to both more patients and more conditions in the future," he said.

"Due to the retrospective nature of the study, we cannot definitively say that ketamine is entirely responsible for the pain relief, but we have provided a basis for additional larger studies to be undertaken," Dr. Schwenk added.

https://www.asahq.org/about-asa/news...ther-therapies
 
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Karlstad University, Sweden


Psychoactive substances as a last resort—self-treatment of migraine and cluster headaches*

Martin Andersson, Mari Persson, Anette Kjellgren

Migraine and cluster headache (CH) are prevailing, episodic, often chronic headache disorders that have a considerable impact on the individual and society. Especially, migraine with a prevalence of nearly 15% worldwide is a significant cause of disability and notably burdens medical costs and loss of productivity. Cluster headaches are a rarer but particularly painful and debilitating form of headache disorder with a prevalence around 1 in 1000 individuals. While there are numerous treatment practices for headache disorders, none are ideal and most exhibits unsatisfactory effectiveness, tolerability, or patient adherence. There are presently no pharmacological treatments available specifically developed for CH. The currently used methods originated as treatments for other indications and were found helpful in CH by chance. Considering that CH is one of the most intense and disabling pain conditions known, the urgency of the circumstances has led care providers and patients to try unusual or experimental remedies.

Self-treatment with psychedelic tryptamines, primarily LSD and psilocybin, was reported to provide a significant lessening of the frequency and intensity of attacks in many cases of both CH and migraines. A full remission was also prevalently reported for both disorders. However, sufferers typically continued to use a psychedelic substance a few times a year to maintain their condition at a minimum. The findings largely confirm previous research indicating that psychedelic tryptamines appear effective for treatment of both CH and migraines, also in otherwise treatment-resistant patients.

Conclusions

Self-treatment of headache disorders is discussed in support groups online. Largely, this interest focuses on the use of the currently illegal psychoactive tryptamines, mainly psilocybin, LSD, and related substances. Often, this pursuit is driven by desperation, and these substances are considered a last resort. It was reported how several of the substances used can serve as potential treatments for migraine and CH. However, this population exposes themselves to risk by self-experimenting with illegal or sometimes new and unknown psychoactive substances. Given the vulnerability of this population, their situation is important to note and to consider seriously. This study also highlights the importance of the reciprocal knowledge production process and harm reduction content emerging from interactive drug forum discussions. More scientific studies are needed to develop safe and effective drugs.

From the study here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5584001/
 
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Sgt. Pepper

Chronic sufferers choosing LSD and psilocybin for migraines

by Michael Chary | Gaia

I remember the day I got my first migraine pretty vividly. I was a freshman in high school sitting in math class, when all of a sudden, my vision became blurry. I soon felt shaky, nauseous, incredibly confused, and frightened by what was happening to me. But in the hour or two it took to see a doctor, my symptoms had disappeared.

Eventually, I realized I had experienced my first migraine, and since then I suffer through a few every year. While they're pretty debilitating and can ruin an entire day, I'm lucky I don't suffer from chronic migraines like some do.

In the U.S. it's estimated that roughly 3.2 million Americans live with chronic migraines and of that percentage, some experience 15 to 20 a month. These headaches last four hours or more on average, and often force sufferers to take days off work. This adds up to not only lost hours of their lives, but lost productivity and money. In fact, it's estimated up to $31 billion in productivity is lost annually from headache disabilities in the U.S. alone.

I can tell when a migraine is coming on because of a chain of predictable symptoms. First, I begin to see auras and my vision is blurred, then all symptoms subside like the calm before a storm, and finally the piercing headache, nausea, vomiting, and shakiness.

Hallucinations and bizarre visuals often accompany or signal to migraine sufferers they're about to endure a headache. The most common visual oddities are blurriness and auras, but some experience zigzags, swirling vortices, and Picasso-esque patterns. Physical hallucinations arent unusual either.

During his first migraine, author, Anthony Peake, says, "I felt that the top of my head was lifting off and moving upwards toward the ceiling. Then I noticed the office seemed to be getting smaller, as if I was looking at it from the wrong end of a telescope."

Only about 15 to 20 percent of migraine sufferers experience migraines with auras. These migraines can be so disorienting and confusing, sometimes rendering sufferers unable to communicate properly, almost like a stroke. But despite the well-documented symptoms and prevalence of these painful experiences, doctors still don't know what causes them exactly.

Headache disorders are ranked 7th in all disabilities globally, though only 36 percent of sufferers are diagnosed. And migraines aren't even the worst type of debilitating headache - that title is reserved for cluster headaches.

Cluster headaches have been described as one of the worst pains a human being can feel, worse than childbirth, or as one sufferer put it, worse than having a limb amputated without anesthesia. Cluster headaches have been nicknamed the suicide headache for reasons that can probably be inferred.

These two types of headaches tend to occur in one gender more than the other, with migraines choosing women, and cluster headaches more often reserved for men. Some attribute this to hormonal functions, but no one really knows for certain.

Specific things activate migraines, including caffeine, lack of sleep, alcohol, weather fluctuations, and stress. Cluster headaches, on the other hand, seem to fall into episodic cycles, and contrary to migraines, sleeping can actually trigger them. Sufferers often get cluster headaches as they're entering REM sleep, leading them to fear bedtime.

LSD and psilocybin for migraines

Sometime in 2015, well over a decade after my headaches began, I was at a friend's house when I felt the early signs of an oncoming migraine. I alerted my buddies to what would happen and the protocol I typically followed to deal with the next few hours of pain.

My friend Sean said he wanted to make me something that might help my symptoms. So he whipped out his mortar and pestle and began making me a chunky paste, while I laid on the couch, preparing for the impending agony. After a few minutes, he came back with the paste and a glass of water, telling me to consume the strange concoction.

I asked what was in it and he replied, "Some honey, various herbs, and some (magic) mushrooms. Not enough to make you trip, just a micro-dose, but there's a chance you might feel a body high. It will definitely help your symptoms, though."

Now, full disclosure, I had taken psilocybin before, so I was familiar with its effects, but the idea of a potential psychedelic trip while suffering from a mind-numbing headache sounded like a horrible idea. But I trusted Sean and took the mushroom mixture.

For chronic headache sufferers, there are a number of pharmaceuticals prescribed to mitigate their symptoms and lead a semi-normal life. Triptans are one of the most commonly prescribed, often paired with an NSAID, i.e. aspirin or ibuprofen. But these drugs are not a panacea and only provide temporary relief.

Triptans are referred to as selective serotonin receptor agonists, stimulating serotonin production in the brain. This serotonin increase reduces inflammation and constricts blood vessels to alleviate the headache. Triptans belong to the tryptamine family of monoamine alkaloids. Coincidentally, the psychoactive compounds found in many psychedelics are also tryptamines.

Psilocybin converts to psilocin in the body, becoming a partial agonist for serotonin receptors known as 5-HT receptors, particularly the 5-HT(2b) and 5-HT(2a) receptors. Psilocybin and other tryptamines, including DMT and LSD, are referred to as serotonergic psychedelics because they activate these serotonin receptors. Triptans work as agonists on serotonin receptors in the same way, but instead stimulate 5-HT(1b) and 5-HT(1d) receptors.

For reasons not fully understood, the receptors that psilocybin and LSD target produce a psychedelic experience, while the receptors the triptans target do not. However, when both receptors are targeted, the psychedelic experience can be amplified immensely, but not in a pleasant way.

Unsurprisingly, another pharmaceutical used in the past to treat migraines, due to its affinity for those 5-HT receptors, is ergotamine, a peptide derived from ergot fungus, first isolated by Arthur Stoll at Sandoz Pharmaceuticals in 1918. Stoll worked alongside Albert Hoffman, the famous chemist who first synthesized LSD at Sandoz from, you guessed it, ergotamine.

When Hoffman accidentally synthesized LSD he had also worked to isolate psilocybin from the mushroom Psilocybe mexicana. Sandoz sold psilocybin to clinicians using it for psychotherapy, before the drug was criminalized in 1968. It's believed that Hoffman was actually working on synthesizing new medicines to treat headaches, which he may have apparently found, though the hype from his discovery's psychedelic properties completely overshadowed any other use for it.

After Sean gave me the micro-dose of magic mushrooms, my headache began to play out as expected. My liver had to first process the psilocybin, convert it to psilocin, and release a number of metabolites into my bloodstream; a process that usually takes 30 to 45 minutes. But after that time had passed, it felt like I had skipped the worst part of my headache and was coasting through the dull afterglow that marks the latter stage of my migraines. I also felt a little woozy, the feeling I knew the mushrooms were responsible for.

It seemed Sean's magic mushroom remedy worked. It didn't stop the headache dead in its tracks, but it did mitigate the pain significantly and shorten the span of it. Now, had I been working at the time, the subtle psychoactive effects of the psilocybin may have been distracting, but with a full-blown migraine, no work would have been accomplished anyway.

Cluster Busters - Using psychedelics for headaches

Triptans, steroids, and other pharmaceuticals prescribed to treat chronic bouts can have long-term side effects ranging from organ fibrosis, cardiac disturbances, and even osteoporosis. And while triptans are good for alleviating individual headaches, chronic sufferers have found that psychedelic serotonergics can break or even prevent the episodic cycles of headaches that recur on a predictable basis.

Those unfortunate enough to suffer from cluster headaches experience as many as eight to 10 a day during cycles. Though they don't suffer year-round, cycles typically last anywhere from two to three-months, with each headache lasting anywhere from 45 minutes to three hours.

Bob Wold is the founder and president of Cluster Busters, a group that has, for the past 15 years, advocated for the study and legal use of psilocybin and LSD for treatment of cluster headaches. Wold began suffering from them biannually for a period of 20 years after being misdiagnosed many times. He was ineffectually prescribed 75 different medications, including the highly addictive fentanyl and even cocaine drops.

Wold was so desperate to ease the pain that he almost underwent an invasive, unproven surgery that would have severed his trigeminal nerves and destroyed all sensation in his face. That was, until he found an online forum touting the benefits of serotonergic psychedelics for treating his condition.

Wold said he asked his two kids, who happened to be in college, to procure him the necessary psilocybin-containing mushrooms to see if they could ameliorate his agonizing pain. While he doesn't condone buying psilocybin mushrooms off the street, as acquiring them is illegal and hard to determine exact dosage, Wold was in a desperate state and willing to take risks.

Shortly after using the drug to treat his headaches, Wold noticed an immediate difference, saying his head hadn't felt that good in the 20 years since his condition began. From then on, he used the drug as both an analgesic and a preventative measure, spreading the word to fellow sufferers as often as possible.

Cluster Busters says it believes the key difference between triptans and serotonergic psychedelics is that the receptor targeted by the latter acts as a vasoconstrictor, preventing attacks by keeping the carotid artery from expanding and pressing on the trigeminal nerves.

Unfortunately, taboos and legal constrictions have made it hard to gauge doses and procure these drugs safely for chronic headache sufferers, but recent persistence and overwhelming anecdotal evidence from Cluster Busters has led to legally approved trials of the drugs for treatment of severe chronic headaches.

Researchers like Harvard psychiatrist, Dr. John Halpern, decided to look more closely into the stories being reported from Cluster Busters and conduct a study of his own. After interviewing 53 subjects who used a serotonergic psychedelic to treat cluster headaches, he found that 95 percent successfully delayed or completely avoided headaches. This led Halpern to set up future double-blind studies with control groups to properly test results.

Much like the dose I received from Sean to treat my migraine, the doses used by most cluster headache sufferers are micro-doses, or non-psychedelic doses. Even the slightly larger, preventative doses Wold takes a few times a year , he says, are roughly tantamount to a buzz from a few glasses of wine - enough to make lights look slightly more vivid.

Another strong proponent who deserves mention for use of psychedelics to treat chronic headaches is Graham Hancock. Hancock says at one point he was suffering from up to 20 severe migraines a month, before he took Ayahuasca and Iboga in shamanic ceremonies.

Ayauhasca is an Amazonian brew containing DMT, another serotonergic psychedelic found in many plants. Today, after suffering from chronic headaches his entire life, Hancock no longer suffers from them at all, and has vowed to take Ayahuasca two to three times a year to prevent them, and for the spiritual experience it provides.

Of course, one should tread with caution when considering these drugs for treatment. Wold says it's important to consult a doctor to ensure these psychoactive substances won't react adversely with any other medications one might be on, and to assure that one is healthy enough to take them.

With any luck, further research into serotonergic psychedelics can help relieve the pain for victims of chronic headaches and eliminate the unwarranted stigma placed on a natural substance with medicinal value. For more information visit the Cluster Busters website or MAPS, another group that continues to achieve funding and legal permission to advance clinical trials studying the healing potential of psychotropic drugs.

https://www.gaia.com/lp/content/psyc...for-migraines/
 
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‘Suicide’ headaches? Magic mushrooms or LSD could offer relief

by David Warmflash | March 8, 2019

Imagine a throbbing, jabbing sensation running from your eye to your neck that feels like someone has jammed an ice pick through your head. It’s the sort of description offered up by people afflicted with cluster headaches, a type of headache similar to migraines, but worse. They often go by the name “suicide” headaches.

Sufferers have a handful of treatment options available. But treatment limits and accompanying side effects have patients pushing for legitimate scientific study of new options involving hallucinogenic drugs like lysergic acid diethylamide (LSD) and psilocybin, the agent in magic mushrooms. The last several years have seen the emergence of a movement for clinical acceptance of psychedelic treatment, based on informal research that suggests these drugs, or agents derived from them, could bring elusive relief. The same drugs also may be promising in treating depression.

A major obstacle, however, is the fact that these substances are heavily controlled by the US Drug Enforcement Administration, which classifies them as Schedule 1 drugs, alongside things like heroin, ecstasy, peyote and marijuana. That means they cannot be prescribed for medical use, though clearly there is currently a national debate raging over marijuana.

What are cluster headaches?

A cluster headache is a type of neurovascular headache. This means that the mechanism causing it is thought to involve changes in the flow of blood through the vessels of the brain. A common type of this headache is the migraine, which afflicts 18 percent of women and 6 percent of men. Cluster headaches are similar to migraines, but much less common. They affect mostly men (40 per 10,000 males versus 8 per 10,000 females) and the pain they cause is more severe and disabling. Usually, the pain is on one side of the head and not the other. As the name suggests, cluster headaches strike in batches. During a period that can last for days, weeks, or months, the person experiences headaches waxing and waning at a rate of a few per day. Between cluster periods, the person is generally symptom-free. It’s not uncommon for these clusters to strike at a particular time of the year, or at predictable intervals throughout the year. Other symptoms of acute attacks include red and tearing eyes, swollen or drooping eyelids, stuffed and runny nose, and sweating of the face and forehead.

Standard treatments

Treatment for cluster headache varies based on where the patient is in the pattern of attacks. Acute attacks are sometimes called “suicide headaches” because the pain can drive victims to extreme measures in the search for relief. During these attacks, treatment aims at easing the pain as fast as possible. The gold standards in this phase employ oxygen (100 percent through a mask) and a class of drugs called triptans, the most common one being sumatriptan.

Another drug used against acute attacks is dihydroergotamine, which is given intravenously. This makes it less desirable compared with sumatriptan, which can be injected just under the skin, and oxygen. Another option is hyperbaric oxygen therapy, in which oxygen is administered through a pressurized tube or room. Every now and then, there is a study examining whether hyperbaric therapy works better than standard oxygen therapy for treating acute vascular headaches. Current research suggests that hyperbaric treatments offer no advantage against cluster headaches. Furthermore, hyperbaric treatments must be delivered at specialized medical facilities.

These types of treatments are called abortive treatments, because they can bring cluster headaches to an end, but they don’t prevent the headaches from returning.

Other treatments are designed to help during the cluster period, rather than during an actual headache. The main treatments in this category are corticosteroids, especially methylprednisone, and methysergide. Steroid therapy can prevent acute headaches in many patients who have entered a cluster period, but side effects and complications are substantial. They include bleeding and bruising, mood changes, swollen face and ankles, muscle weakness, osteoporosis (loss of bone density) and suppression of the immune system. Consequently, steroid therapy doesn’t work as a long-term option. Methylseride is a different type of drug that has shown effectiveness for some patients, but it also has side effects that include nausea, dizziness, leg cramps and pain in the upper abdomen.

Finally, there are standard drugs for long-term prevention. Verapamil, lithium, topiramate and valproic acid are used most often. But they don’t work for every patient, and all have unpleasant side effects. For patients in whom drugs haven’t worked, there are surgical procedures involving the trigeminal nerve. And some surgeons have tried implanting electrodes to stimulate either the occipital nerve or the hypothalamus. These treatments also have complications. In a handful of patients, the surgery simply shifts the cluster headaches from one side of the head to the other.

Psychedelics and derivatives

Out of sheer desperation, people experiencing cluster headaches have tried treatments that are not supported by scientific studies. It’s an alternative medicine approach that has occasionally led to real scientific studies. LSD was invented in the 1930s and was very much in fashion in the 1960s and early 1970s. Some years later, a man who suffered from cluster headaches at a predictable time of the year, noticed there was a year when he didn’t have any attacks. It was the same year in which he used LSD. His experiences encouraged other sufferers to experiment with LSD as well as psilocybin.

Patients found the drugs worked and starting talking about it with their neurologists, leading to publication of a scientific report in the Journal of Neurology in 2006. The report was a retrospective study, meaning that data was drawn from something that already happened. Specifically, out of 53 patients, 85 percent who tried LSD and 52 percent who tried magic mushrooms reported that their headaches subsided. If nothing else, this could serve as impetus for conducting randomized control studies.

A study published in mid 2016 in the prestigious journal Nature is encouraging as it shows a benefit of psilocybin against signs and symptoms of depression. Only 12 patients were involved, making the study still smaller than the cluster headache study of 2006. But improvement was noted in all 12 patients. There’s no reason to jump for joy yet, but it is a topic to watch closely and it does lay the groundwork for larger studies.

The fact that LSD and psilocybin are Schedule 1 drugs is an obstacle to extensive research, but patients with cluster headaches have another reason for optimism in a drug called 2-bromo-LSD. Developed originally for use as a placebo during LSD testing, it is not psychedelic. But people trying it have reported that it is effective against cluster headaches.

https://geneticliteracyproject.org/...hes-magic-mushrooms-lsd-might-provide-relief/
 
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Suicide headaches driving sufferers to try psychedelics


by Martha Henriques | International Business Times | Sep 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 meds to alleviate this intense pain don'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 doesnt 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."

 
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Meet the man using magic mushrooms to treat his 'cluster headaches'

It's an illness so unbearable that sufferers in the US take their own lives at a rate 20 times the national average.

The cluster headache, or "suicide headache" as it's known, affects fewer than one in 1000 people and is referred to by experts as the most painful condition known to medical science.

There is no official cure but some sufferers believe they have found relief in psychedelic drugs such as magic mushrooms.

US filmmaker Tyler Mann has been treating his cluster headaches with magic mushrooms for three years and says without his self-prescribed psychedelic medicine he may have become another casualty of the debilitating illness.

"I can absolutely tell you that magic mushrooms are one of the reasons I'm still here. Cluster headaches are … I wouldn't wish that pain on anybody."

Mr Mann discovered the unusual treatment method through a Facebook community of other sufferers. Many of these "clusterheads" had been experimenting with drugs such as magic mushrooms, LSD and DMT and saw a reduction in headache episodes. In some cases the pain completely disappeared.

Magic mushrooms worked for Mr Mann on the first try and since then he has been self-medicating twice a week when he falls ill with one to three grams of the psychedelic he calls a "miracle drug".

For those unaware of the potency of psilocybin mushrooms - that is not an amount to be sniffed at. Mr Mann agrees "it's a big dose" and says he definitely gets high, but says he and the other users enjoy the experience.

He's currently shooting a documentary called Clusterheads about the community of people treating their illness with psychedelics. He hopes the film will go some way to convincing lawmakers in the states to recognise magic mushrooms and other drugs as a treatment method.

Right now one of the only legal ways to abort an attack is the inhalation of highly-concentrated oxygen, however it is expensive and hard to obtain because it is not covered under medical insurance. Therefore, Mr Mann says it's easier for him to get magic mushrooms.

It may be illegal but he says it's worth the risk for him and the other "clusterheads".

"This is the risk we have to take to keep from being in pain and I'm totally okay with that."

 
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Longtime sufferers of cluster headaches find relief in psychedelics

by Valerie Vande Panne | DAILY BEAST

About a year ago, I attended a conference at a Boston-area university. I joined the ranks of experts and students playing session-hooky in the hallways. The conversation turned to MDMA, and its use in treating veterans with post-traumatic stress disorder. A doctor turned to me and whispered, “You think that’s something? You should see what psychedelic mushrooms are doing for patients with cluster headaches!”

Intrigued, I asked, “What?!”

The doctor gushed that they were seeing remission, and that patient groups across the country were helping each other heal with the ‘shrooms. When I asked for more details, and if he would go on record, he politely clammed up and walked away. I suppose that was for the best—I couldn’t find a media outlet at that time to take the story anyway.

Oh, what a difference a year makes. As medical marijuana gains traction across the nation, the cannabis plant’s therapeutic value is seldom questioned, except perhaps by those whose job it is to support marijuana prohibition.

And with the mainstream recognition that this plant might have more healing power than the Federal government cares to acknowledge, other, traditionally more frightening illicit drugs like psychedelics, are being noted for their therapeutic value, too.

Psilocybin—aka magic mushrooms, and LSD are Schedule I drugs, the same Federal class marijuana sits in having no recognized medicinal value and a high potential for abuse, are being turned to for relief of cluster headaches.

Cluster headaches are excruciating for those who suffer from them.

More than one person in the course of research for this story likened the headaches to “an icepick piercing your brain through your eyes.” The headaches come in cycles, sometime multiple times a day, and an attack can last for up to 90 minutes. It’s debilitating to the point where cluster headache patients cannot function normally in society—how do you tell your boss you need to take an hour off while you suffer through excruciating pain? Modern medications—from opiates to steroids to neuro-implants—are, at best, minimally effective. There is no known cure. The suicide rate for those with the disease is 20 times the national average (PDF), according to a report published by the Multidisciplinary Association for Psychedelic Studies (MAPS), a 501(c)(3) non-profit research and educational organization dedicated to expanding the usages of psychedelics and marijuana.

There are an estimated 1 out of every 1000 Americans, 350,000-400,000 people, who suffer with the disease.

Bob Wold, 61, started getting the killer headaches 35 years ago. He tried over 70 different medications, and none of them worked. There is only one FDA-approved medication for cluster headaches. Other than that, all other treatments are off-label.

According to Wold, the National Institutes of Health has spent less than $2 million on studying cluster headaches in 25 years.

And so, Wold was “always on the look out for something better.”

Combing the Internet and message boards, he started doing research, and found people talking about psychedelics. “A guy in Scotland had used some LSD recreationally and his cluster headaches didn’t happen that year. [The headaches] start the same time of year, every year,” he explains, "so if your cycle starts in the spring, that’s when they’ll usually start to come on."

“This guy’s cycle didn’t start that fall, and he attributed it to LSD,”
Wold says. “When Albert Hoffman was researching LSD, he was looking for a drug for headaches and migraines.”

“Other people tried it, and had amazing results,”
Wold continues. “It gave long-lasting results after just a couple of doses. You could avoid the [headache] cycle from just 2-3 doses, 5 days apart at the start of cycle—and that stops it. It works. We’re trying to figure out why that is.”

And when he says “doses”—it’s not what you might think. These sufferers do not want to trip. They want relief. Just a quarter of what would be considered a recreational dose is effective for stopping their headaches.

Wold says that while low-doses of LSD are effective, (“People liken it to the buzz of drinking three beers,” he says.) It’s difficult to get. “But mushrooms are effective, and you can grow your own. For a $50-$100 investment, patients can grow several years worth of medication.”

And that’s what many cluster headache patients are doing now—growing their own mushrooms for medicine.

Wold founded ClusterBusters, a 501(c)3 non-profit organization involved in research, education, and advocacy for cluster headache patients, in 2002 to get formal research going. He even took his anecdotal research to Harvard.

Dr. John Halpern, MD, is Assistant Professor of Psychiatry at Harvard Medical School, Director of the Laboratory for Integrative Psychiatry, Psychiatrist-in-Charge of Division Coverage—Division of Alcohol and Drug Abuse. In other words, he’s a Harvard expert. “People from ClusterBusters came to me,” says Halpern. “There was nothing published on psilocybin and LSD for cluster headaches. I thought it would be important to get something into the literature.”

So Halpern started doing research. “Cluster headaches is one of the most painful conditions we know of in medicine,” Halpern says. “Proposing a hallucinogen as a solution is a real arduous process to get authorized.” So Halpern suggested looking at a non-hallucinogenic 2-Bromo-LSD, instead of LSD. It’s similar in chemical structure to LSD, except for a huge bromine atom that prevents receptors in the brain from picking up the psychedelic properties of the drug.

Halpern went to Germany, where there is a compassionate use provision that allows a doctor to take on the risks of administering a non-approved drug if there is a compelling need. There they tried non-hallucinogenic 2-Bromo-LSD for chronic cluster headaches.

It worked.

“One patient had cluster headaches for 27 years. He had debilitating 3-month long cycles, and wasn’t responding to meds. He was devastated. He was getting 40 cluster headaches a week. After his treatment, he had zero headaches for 17 months."

“This drug appears to shut cluster headaches down and puts patients into remission,”
says Halpern. “It’s astounding.”

“People are suffering and they don’t need to be,”
says Wold. “There are things that can help them. A lot of people won’t touch anything that isn’t FDA approved. Most people who try psychedelics for clusters are trying psychedelics for the first time. It’s a big step for them. People need to do their own research and find out how safe psychedelics are, especially in a clinical setting. I’ve lost a lot of friends over the years—some have refused to try the psychedelics. I understand. It’s fear about what might happen."

“The reason so many people are involved in pushing for the research, it’s for the people who want FDA approved medication, and not have to worry about losing their job or their family,”
Wold continues.

Yet, that’s proving to be more difficult than one suffering from the disease might hope.

For one thing, there’s about twice as many people with the disease in the USA than the required maximum to achieve “orphan drug” status—a position that would grant a good deal of government support, protection, and potential financial return.

The other issue?

While everyone interviewed for this article stressed they didn’t want to sound cynical, the same comment kept coming up: profit before people.

In other words, should a pharmaceutical company or investment firm sink the hundreds of millions of dollars into research and the process to get, for example, non-psychedelic 2-Bromo-LSD approved by the FDA as a legitimate prescription drug, they would want a guarantee that they’d have a significant return on that money. To sell three pills a year to less than half a million people… you don’t have to be a mathematician to see that the financial return on that would not exist.

In other words, “psychedelics work so well, you take fewer doses,” says Halpern. “That’s a problem. They work too well to attract the research.”

“I’m stunned and afraid 2-Bromo-LSD might not ever get developed because of a drug development system that wouldn’t support a drug like this. And let’s face it: it’s an unusual way. Just three pills stop the attacks for months—even years,”
says Halpern, sounding frustrated.

“I know that there’s lots of people using psilocybin and LSD. But if we got Bromo to market, they wouldn’t have to do that.”

“These are people who aren’t from a background of illicit drug use, and it’s awkward for them,”
Halpern continues. “They have an extensive community of support amongst themselves. Some have elected to grow their own mushrooms. Many have tremendous hesitation in breaking the law and engaging in something that hasn’t been approved by the FDA.”

“We stress with everyone that they should discuss this with their doctor,”
says Wold. “Most patients go for months from drug to drug trying to find something.”

"If patients are using mushrooms and LSD underground,"
says Halpern, "it’s because the system has failed” to develop a non-psychedelic option, like 2-Bromo-LSD. It’s as close to a functional cure as possible.”

According to Halpern and Wold, there are investors interested in the development of the drug—but only if it gets orphan drug status.

“We have to get in a lab and do this research and find out why it’s working,” said Halpern.

Brian E. McGeeney, MD, MPH, is a neurologist and Assistant Professor of Neurology at Boston University School of Medicine. He walks the delicate line of treating patients who suffer from cluster headaches. “I’m not promoting psychedelics to patients,” he stresses. “I am open to discussing it with patients. But it’s their decision to use it or not.”

But, what makes him a sought-after doctor in the community? “I don’t freak out like a lot of other folks” when the topic of psychedelics comes up, remembering that, “We have First Amendment protection.”

McGeeney says that cluster headaches are a “disorder that destroys people emotionally. The use of hallucinogens gives them a break, which they wouldn’t otherwise get. Many feel ignored or let down by the medical community. Physicians lose interest in them as treatments don’t work. The use of [psychedelics] is a last resort.”

“Sometimes our standard medical treatments don’t work,” he continues. “And there’s a lot of bitterness among patients for lack of help from regular health care professionals.”

“As physicians, we don’t want to be accused of wrong-doing, promoting illegal activity,”
McGeeney says. “Physicians get scared about what the drug interactions might be. And then physicians might be conflicted about what to put down in the medical records, because if they put down what is happening, will that be used against them at some point in time? We want to walk a fine line between not pushing that [therapy] on anybody, but be understanding and helpful and act as a resource for patients who are pursing [that type of solution].”

“It’s such a pity that we don’t have good evidence behind this, because of its scheduled nature,”
McGeeney says.

McGeeney also sees potential treatment for migraines, “to a variable extent… It hasn’t been looked at all. If it works for cluster, what about the common headache?”

Halpern echoes the potential too, “This drug [2-Bromo-LSD] could be a blockbuster, just for cluster headache, but what if it turns out it’s good for migraines too?”

“We’ve come a long way,”
says Wold. “When I first started ClusterBusters, I couldn’t even get doctors to return an email if it included ‘psilocybin’ in the email. I don’t have that problem anymore. We’re accepted as members of the biggest headache societies and medical groups. They’re coming to our conferences and making presentations and they’re interested in what we’re doing.”

“When I see people committing suicide because they don’t have anything to treat their headaches, it’s amazing to me that anyone would keep an option from someone at that point,”
says Wold.

And while the plea for research thumps louder in the cluster headache community, Halpern, (whose company, Entheogen Corp, holds the patent on the non-psychedelic 2-Bromo-LSD) is left with one observation.

“In the absence of fact, fear can reign.”

 
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Ending the pain: psychedelics show promising results for treating cluster headaches

by Wesley Thoricatha | Psychedelic Times

As new research into the use of psychedelics for therapeutic applications continues to expand, psychologists, doctors, and researchers are beginning to better understand and appreciate the value of non-ordinary states of consciousness for treating conditions like PTSD, addiction, social anxiety, and much more. But even beyond the increasingly-recognized therapeutic value of psychedelic experiences, psychedelics like LSD and psilocybin mushrooms are now being heralded as having highly valuable medical applications in low, pre-hallucinogenic doses. One serious health condition that these substances are helping to fight, and, in some cases cure is cluster headaches. The implications of psychedelics in treating physical and non-psychological pain is surprising to many, and can lead to a better understanding of the connection between the mind and body.

Suicide headaches

Cluster headaches are one of the most excruciating experiences known to man, giving a sensation likened to an ice-pick being shoved through your eye socket and brain. Sufferers of cluster headaches often have multiple attacks per day during certain seasons of the year, and the pain is so intense that it prevents them from participating in normal society. They have earned the name of “suicide headaches” because the suicide rates for cluster headache sufferers is 20 times the national average.

Traditional treatments for cluster headaches are varied, limited in their effectiveness, and often have serious physical and psychological side effects, leading one sufferer to proclaim, “The disease won’t kill you, but the treatments might.” These long term side effects include organ fibrosis, blood pressure and heart issues, type 2 diabetes, osteoporosis, and mental disorders. It is no wonder that cluster headache sufferers have sought out alternative treatments and joined together in groups like the nonprofit Cluster Busters to support each other and advocate for more research into their condition. One of the most promising alternative treatments that they are looking into involves taking LSD or psilocybin mushrooms in low doses. While it is certainly controversial, it appears to be hugely effective.

New research

While there are currently no clinical trials for the use of LSD or psilocybin mushrooms in the treatment of cluster headaches, researchers R. Andrew Sewell, John H. Halpern and Harrison G. Pope, Jr carried out interviews with 53 cluster headache sufferers who had self-medicated with these substances to treat their condition. The anecdotal evidence was astonishing:

- 22 of 26 psilocybin users reported that psilocybin aborted attacks.
- 25 of 48 psilocybin users and 7 of 8 LSD users reported cluster period termination.
- 18 of 19 psilocybin users and 4 of 5 LSD users reported remission period extension.

With such a painful condition and a stark lack of effective treatment options, it is no wonder that groups like Cluster Busters are advocating for more research into LSD and psilocybin. As with many psychedelic treatments, when compared to their traditional prescription drug counterparts they come with the huge benefits of requiring very few doses and having essentially no side effects outside of the time in which they are taken. The latter is even more pronounced when concerning cluster headaches, where dosages of the psychedelics are low and hallucinogenic effects are mild to nonexistent.

While science and medicine are still conservative and slow-going in their acceptance of psychedelics, the facts show that these treatments need to be researched, understood, and made available as soon as possible to help sufferers of cluster headaches and other conditions. As Bob Wold, the founder of Cluster Busters, states: “When I see people committing suicide because they don’t have anything to treat their headaches, it’s amazing to me that anyone would keep an option from someone at that point.

 
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Cluster headaches are way worse than migraines

by Cindy Kuzma

They're so bad that some people refer to them as "suicide headaches."

The first time Ashley Hattle had a cluster headache attack, she was 18 and at her summer job, on the lifeguard stand. “It basically came on like a brain freeze—and stayed,” she says.

She spent an hour and a half on her back on the cold cement poolside, trying to focus on anything but the searing sensation behind her right eye. Finally, the pain relented, only to return again at the same time the next day, and the next day, and the next, for two weeks.

For the most part, she’d rate the agony of each attack at a ten on a scale of ten. “Around 45 minutes in, it reaches this point in pain where you stop breathing for a second,” says Hattle, now 29, a medical writer and author of the book Cluster Headaches: A Guide to Surviving One of the Most Painful Conditions Known to Man. “The pain is so shocking. There’s no way anything else in life could feel worse than that. This is the feeling of death, only you don’t die.”

Though the condition itself isn’t fatal, the extreme pain can lead to devastating consequences—cluster headaches are also called "suicide headaches."

One man, who had his first attack at night, jumped out of bed convinced he’d been shot, says Brian McGeeney, a Boston Medical Center neurologist, headache specialist, and assistant professor of neurology at Boston University School of Medicine.

The patient grabbed his gun, began hunting for an intruder, and called the cops—who took him to the ER.

A patient of Wake Forest Baptist Medical Center headache specialist Juline Bryson made the reverse trip. When an attack led him to scream, pace, and curse during an appointment with a physician who didn’t know about the condition, he was carted away in a police cruiser.

Cluster headaches can develop at any age, occur in men more often than women, and strike out of nowhere, always on one side of the head (though sometimes the side shifts from attack to attack).

Migraines might rank as the most common headache, affecting about 12 percent of the population, as compared to the estimated 0.4 percent of men and .08 percent of women who have cluster headaches. But due to their severity, cluster headaches are particularly debilitating.

Eric Dawkins, 36, drives a truck for a lumber company—except for the days he’s sidelined by cluster attacks he describes as “excruciating, almost like someone hitting me in the head with a hammer and nails.” Over the course of three years, he’s missed up to six weeks of work. Last summer, he spent about a week in the hospital, where even morphine couldn’t alleviate his symptoms.

Speak to a clusterhead, as they call themselves, and you’ll hear details about each person’s “cycle.” Most have active periods once or twice per year, during which they have one or two attacks daily for a few weeks or months. In between, months or even years can pass pain-free.

Hattle, for instance, once had two annual periods of pain, in the spring and fall. Treatment has eliminated her spring cycle, but each October, she knows she’ll be hit with daily cluster episodes through approximately mid-January. She’s engaged to a man who has chronic cluster headaches, meaning his cycles last a year or longer with no intermittent days of relief.

Dawkins has his cycle in the summer. His attacks, as is often the case, tend to come at night. Unlike migraines, patients with cluster headaches feel agitated, driven to move. During his cycle, Dawkins will find himself taking hot showers—the steam seems to offer a distraction—then pacing the house from 1 to 3 am.

"The fact that active cluster periods strike seasonally and around the same time each day has offered scientists some insights into the brain changes that bring them on. It’s not clear why some people get them or what sets them off—unlike migraine, cluster headaches seem to have no external triggers, though alcohol can bring on an attack during an active period," McGeeney says.

But researchers have begun to identify what Yale Medicine headache specialist Deena Kuruvilla calls “synchronized abnormal activity,” connecting three circuits of the brain: the hypothalamus, trigeminal nerve, and autonomic nervous system.

Brain scans of patients in the “on” portion of their cycles have revealed altered activity patterns in the hypothalamus, which controls circadian rhythms.

"The trigeminal nerve—which carries sensations from the face to the brain—also turns highly sensitive," McGeeney says. "Specifically, neurons that relay pain signals along the branch of the nerve that leads directly to the eye fire up for no apparent reason."

One theory holds that dysfunction in the hypothalamus enlarges the carotid arteries, the large vessels in the neck that carry blood to the face and brain, which then press on the nerve and trigger the throbbing, Kuruvilla says.

Nearby fibers in the autonomic nervous system, which controls unconscious systems like blood pressure and perspiration, also switch on irregularly. As a result, people in the midst of an attack also tend to have a single droopy eyelid, bloodshot eye, and stuffed-up or runny nostril on the same side as the pain. That half of their face may also swell or sweat.

"Getting an accurate diagnosis is critical in managing the severe pain of cluster headaches," McGeeney says. "For one thing, it’s critical to rule out life-threatening conditions like brain aneurysms, which may cause similar symptoms—meaning anyone with severe head pain should seek immediate medical treatment. Cluster headache is so rare that some doctors, even neurologists, aren’t familiar with the symptoms, delaying the process." (Hattle’s diagnosis, for instance, took seven years.)

In the meantime, patients may be told they have migraines. Some have their pain diminished or dismissed entirely, leading them to “decouple,” as McGeeney puts it, from the medical system. If they stay, they may undergo potentially harmful and unnecessary treatments. Before he started seeing Kuruvilla, Dawkins had several teeth extracted and took medications for what he was told was a severe sinus infection. "Some people with cluster headaches receive opioids, which come with serious risks and do nothing to relieve their pain," Bryson says.

What does work, at least for many people, is a three-tiered approach. Preventive medications, which include blood-pressure or anti-seizure drugs, help ward off future cycles and attacks. High doses of melatonin—about 10 milligrams—may also relieve pain and help patients sleep, Kuruvilla points out.

Because preventive drugs require time to build up in the body, doctors may also offer a transitional treatment that slows nerve signals in the meantime—for instance, a course of steroids or an occipital nerve block, an injection of a solution containing steroids or other drugs into the back of the head.

Finally, fast-acting therapies can halt active attacks in their tracks. This includes injections or nasal sprays (not pills, which take too long to kick in) of a drug called sumatriptan, also used to treat migraines. Inhaling high-flow oxygen through a special mask also offers a near-instant break.

"Though they tame pain for many people, each of these so-called abortive treatments has its drawbacks. Insurance companies may limit patients’ doses of sumatriptan, and taking the injections too often can lead to rebound headaches. And though oxygen has been shown to be effective in interrupting attacks, Medicare, Medicaid, and most other insurance companies don’t cover it," McGeeney says.

Research funding for cluster headaches has lagged far behind that for migraine, he notes. Still, some promising newer treatments are under investigation. This includes medications that act as antibodies against an inflammatory molecule called CGRP (calcitonin gene-related peptide), implicated in migraines and potentially involved in cluster headaches as well.

Another new approach involves placing a small nerve stimulator in the mouth. When activated, the device sends electrical impulses to a bundle of nerves behind the nose called the sphenopalatine ganglion, which plays a key role in transmitting pain signals. In one recent study, these so-called SPG stimulators relieved pain in two-thirds of the cluster headache patients who tried them.

Desperate patients have also discovered treatments of their own—including hallucinogens. One wrote a blog post in the 1990s about the relief he experienced after tripping on LSD. Others tried it, along with psilocybins or psychedelic mushrooms, and found their attacks switched off for weeks.

In 2006, Harvard researchers published a paper in journal Neurology describing patients’ experiences. In the meantime, several other studies—including one of a non-hallucinogenic form of LSD—have provided some support for their effectiveness. But these drugs’ schedule 1 status prevents doctors from recommending them.

An entire patient advocacy group, Clusterbusters, was formed in 2002 largely to promote research into these drugs as therapies, as well as to support and educate (McGeeney now serves as a medical adviser, and Hattle is on the board of directors.) The organization and its president Bob Wold, who also has cluster headaches, achieved a major breakthrough at the end of 2016: A Yale trial of psilocybin began recruiting patients through the Veterans Affairs Hospital in West Haven, Connecticut.

McGeeney believes physicians who treat cluster headaches have much to learn from patients’ experiences, and makes a point of both attending Clusterbusters’ annual meeting and taking people with the condition to speak at medical conference. Supportive and knowledgeable doctors who offer comprehensive management approaches—as well as understanding friends and family—go a long way toward making life with cluster headaches bearable, patients like Hattle and Dawkins say.

“Do what you can to keep support by your side and keep pushing and keep being strong because they are the type of headaches that can break you down and make you question wanting to be here,” Dawkins advises those who cope with the condition. “I’m thankful for my wife, thankful for having three beautiful kids, and having reasons other than just myself for getting up and keeping going in the mornings.”

 
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New drug Ubrogepant works quickly to relieve acute migraine pain*

by Rita Aghjayan | Clinical Advisor | 31 Jan 2020

Ubrogepant has been shown to relieve migraine pain and symptoms within 2 hours of treatment compared with placebo, according to the results published in the New England Journal of Medicine.

In December 2019, the FDA-approved Ubrogepant for the acute treatment of migraine in adults with or without aura, making it the first-in-class oral medicine for this indication.

Investigators conducted a randomized trial to assess the efficacy, safety, and side effects associated with oral Ubrogepant. Participants of the study were randomly assigned to receive an initial dose of placebo, 50 mg of Ubrogepant, or 100 mg of Ubrogepant for a single migraine attack. Patients were given the option to take a second dose if needed.

Primary outcomes included complete absence of pain and “most bothersome migraine-associated symptom” at 2 hours after the initial dose. Secondary outcomes measured at 2 hours after the initial dose included pain relief and lack of symptoms linked to migraine such as photophobia, phonophobia, and nausea. Secondary outcomes between 2 and 24 hours after initial treatment included sustained pain relief and freedom from pain.

Two hours after treatment, 21 percent of the 100-mg Ubrogepant group were free from migraine pain after an initial dose.

*From the article here:

 
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