The resulting six themes are presented below together with some illustrative quotations.
A desperate need for effective treatments
This theme provides an insight into the difficulties that migraine and cluster headache sufferers experience and the typical incentives to use alternative therapies.
The pain caused primarily by CH but also some migraines was depicted as so immensely painful and disabling that sufferers were willing to “do anything” to alleviate them: “I have fractured multiple bones, and cluster pain is an order of magnitude worse.” Suicidal thoughts and feeling were reported as a result of the intense suffering and desperation caused by CH and severe cases of migraines. CH was sometimes labeled “suicide headache,” and this was something very relatable for many of the sufferers: “I came pretty close to ending my life over it.”
It was not only during the acute attacks that these conditions were causing difficulties. The sheer worry of the next debilitating attack was linked to anxiety and stress disorders: “Lots of cluster-headache sufferers end up with PTSD.” Also, sufferers of CH and severe migraines expressed how the disorder, as well as secondary diseases, complicated the routines of everyday life; everything from social contacts, work, and the ability to enjoy various activities was sometimes radically limited. Family and other relationships were potentially also heavily influenced: “Cluster headaches have broken up families, relationships, and marriages.”
CH patients often perceived themselves to be misdiagnosed by health care and felt their condition were not adequately treated. The conventional medical treatments were often described as virtually ineffective for CH: “I have tried everything with no success, including ergot derivatives, opiates, anticonvulsants, NSAIDs and so on.” Various opiate-based painkillers were commonly prescribed for CH sufferers but were predominantly reported as inadequate or even acting as potential triggers for attacks: “Opiates did nothing.”/“Opiates may well even trigger attacks as I am sensitive to histamine as a trigger.” Problems with addiction from the use of prescribed opiates further discouraged the use of opiate therapy: “I am 100 days sober off opiates for the first time in 5 years.”
There were some reports where medical personnel (i.e., physicians, psychiatrists) had advised an alternative or illegal treatment when current treatments were not sufficient: “My psychiatrist suggested that psilocybin-containing mushrooms might help.” A few reported prior use of illicit drugs, but those who never previously imagined taking an illegal drug, or do anything illegal, were also seeking alternative treatments from sheer desperation: “I cannot believe I have resorted to this, but nothing else works.”
The role of the forum—finding alternative treatments and community support
This theme describes how CH and migraine sufferers used the discussion forums to find and exchange information regarding the use of alternative treatments and how to acquire the various substances employed for this purpose. Additionally, the forums were used as a platform to seek compassion, understanding, and fellowship: “One of the worst things that cluster sufferers go through is the feeling of being alone.” The support shared via these forums appeared to be highly valuable for this vulnerable population: “ When there is no hope to be found in professionals, online forums with people who have visited your private hell are sometimes all you have.” Similarly, the discussion forums were used by relatives and dependents of CH and migraine sufferers for support and information regarding these conditions.
Numerous users reportedly found effective treatments via the guidance from peers on these forums: “With the advice of one of these specific forums, I found the miracle drug.” The discussed substances often were fully illicit and could only be obtained from the black market or be self-produced. Other substances, so-called novel psychoactive substances (NPS), are semi-legal and were typically acquired from publicly available online vendors (gray market): “Various mail order companies are serving chemicals like these to the public.” Some of the online drug (NPS) vendors were recommended as somewhat knowledgeable of CH and substances used as potential treatment. A few fully legal substances were also considered.
Even when illegality was a factor, the availability of considered substances seemed relatively high. However, availability was also somewhat varying according to the legal situation in the respective country: “Being in Japan might add small challenges.” Some discussions revolved around how to bypass the limitations of the legal status to obtain various illegal drugs. For instance, using online “darknet” vendors was discussed as a way to acquire illicit substances, otherwise hard to find. Several sufferers stressed the importance of changes to drug laws or to make exceptions for some substances and conditions: “I really wish I lived in a state with accessible medical marijuana policies.” Another suggested route was to choose legal but equivalent or similar compounds.
Although the enthusiasm of those who experienced relief by various substances was apparent, the information exchange was often nuanced and focused on minimizing harm and to optimize the effectiveness of the self-treatments: “Synthetic tryptamines don’t have the records of safe medicinal and spiritual use that mushrooms have, promoting them to a novice seems like a poor idea.” Warnings concerning dangerous interactions with other drugs were issued. Especially a caution of combining prescribed antidepressants and serotonergic tryptamines was noted: “Be aware that the more serotonin agonists she is taking at increase the risk of developing serotonin syndrome.”
Alternative treatment substances
A summary of substances and treatment alternatives used for self-treatment of CH or migraines is presented below. Recommendations on how to avoid certain substances, foods, and other factors possibly triggering attacks are also included in this theme.
Overall, the forum discussions revolved around general descriptions on the use of psychedelic tryptamines (not always specified which particular substance) to cure or alleviate these disorders: “Using psychedelics to treat migraines.”/“Treating cluster headaches with psychedelics.”
Psilocybin, or psilocybin-containing mushrooms, was commonly utilized for both migraines and CH: “I used magic mushrooms to abort my chronic migraines.”/“I am taking mushrooms for the treatment of cluster headaches.” The incentives and approaches to using psilocybin varied amongst sufferers; some initially used psilocybin for purposes outside the treatment of CH or migraines but were also pleased to experience alleviating effects on these conditions. However, most users did not appear to prefer any psychoactive effects and were solely seeking a possible alleviation of their ailment: “A toned down version of a mushroom trip may be very desirable in many contexts.”
LSD was a common and highly regarded substance for treating both CH and migraines in the reports: “LSD may be the most efficient of the psychedelic treatments.” The data also described other LSD-related substances; 1P-LSD or AL-LAD was mentioned as potential alternatives to LSD. Seeds from four different varieties of flowers, containing the tryptamine d-lysergic acid amide (LSA), like Rivea corymbosa, Argyreia nervosa (Hawaiian Baby Woodrose), or Ipomoea tricolor (Morning Glory) were also commonly used and recommended as a (mostly) legal and more available alternative.
Other psychedelic tryptamines were also frequently discussed as potential treatment options. Attempted self-medication using N,N-dimethyltryptamine (DMT), as well as various novel synthetic tryptamines, was described in several reports: “I have been dosing my girlfriend with 4-ACO-MET or 4-ACO-DMT. It aborted pain level 10 migraine attacks in 30 minutes or less that usually leaves her screaming incapacitated with pain.” Certain synthetic tryptamines were sometimes preferred over psilocybin (mushrooms) since the psychoactive effects were perceived as more manageable: “4-HO-MiPT and 4-HO-MET are said to be not as chaotic as shrooms”.
There were also some discussions on using various combinations of substances and how to test different combinations until the best possible effects were achieved: “The list includes a variety of ”exotic“ tryptamines but also many phenethylamines, particularly in the 2C- family.” A few also mentioned using combinations of prescription medications and non-approved drugs. The recommended administration of prescribed medications was sometimes altered by, for example, grounding pills to a powder to use by nasal insufflation or to exceed the prescribed dosage.
Cannabis was commonly discussed for its potential to alleviate symptoms or lessen the frequency of migraine attacks. Some had used cannabis for unrelated purposes but experienced additional benefits on the headaches.
Other substances, briefly mentioned as potential treatment alternatives, were melatonin, opium, ketamine, cocaine, lidocaine, and MDMA. Also, caffeinated energy drinks (or taurine that is present in most energy drinks) were mentioned: “Energy Drinks - Slam one right when you feel the attack coming on.” Vitamins and supplements were sometimes recommended but were not discussed extensively: “I am getting incredible results from being on the D3 regimen”. Other lifestyle factors like exercise, nutrients, and a healthy diet were also discussed and suggested: “Lots and lots of plant foods like broccoli or carrots and spinach.”
Discussions on preventing episodes of CH and migraines by avoiding certain “triggers” were present in the data. Alcohol, chocolate, fermented cheese, opiates, histamines, carbon oxide, carbon monoxide, sumatriptan, phenethylamines (2C− substances), sudden drops in blood pressure, and changes in weather were discussed amongst the suggested triggers to avoid: “Phenethylamines can trigger terrible migraines, especially 2C-series”/“Sumatriptan caused me to have 51 attacks in 7 days.”
Dosage and regimens
Indicated dosages and discussions on dosing regimens are outlined in this theme. The timing and routes of administration were discussed for some substances. Principally, three different approaches or regimens for dosing were reviewed and recommended: the cyclic “busting” (or “clusterbuster”) method, frequent “microdosing,” or single and occasional “full” doses.
Generally, self-treatment was implemented according to one of the dosing regimens. Busting (or the “clusterbuster” method) is an administration regimen where psychedelic tryptamines are used in moderate to medium dosage and strategically timed with the regularly cyclic nature of CH episodes: “The use of psilocybin as a way to cure or manage cluster headaches, a.k.a. busting.” The dosage interval can differ between individuals; one example was dosing every fifth day during a cluster cycle until the cycle is over. Preventive doses are often used preceding a cycle to prohibit the onset of episodes or to reduce the intensity and or frequency of attacks. Discussions regarding the administration regimen “busting” did not clarify exact dosages, but generally, half the amount of a mild recreational dose was suggested. Busting regimen discussions focused more on the importance of the timing and interval of dosage: “Many have found the terror fades along with the prevention of complete cycles via busting.”
Microdosing was a related administration strategy frequently discussed and recommended. Microdosing is the practice of taking a sub-perceptual dose (an amount too small to produce typical “psychedelic” effects) of a substance: “The idea is to take enough to be effective against clusters without going on a significant trip.” The substances used for microdosing and were most commonly psilocybin, LSD, as well as LSA seeds, and some synthetic psychedelic tryptamines. Microdosing was utilized to avoid significant psychoactive effects, to enable more frequent use, and to prevent adverse effects: “Research thus far seems to indicate that microdosing is not harmful or dangerous.” Since apparent psychoactive effects did not hinder the daily routine, microdosing was sometimes preferred over the busting regimen: “I used the busting method for years but turned to microdosing, much easier to fit in.”
When not using a particular dosing regimen, it was typical to employ higher but single or occasional doses. For some individuals, higher or “full doses” were reportedly necessary to promote therapeutic effects. However, a “step-up” approach was typically recommended, starting with a tiny dose and gradually increasing the dosage until preferred effects were achieved.
A benchmark for occasional single doses of psilocybin was around 1 g of dry Psilocybe cubensis but could vary between 0.25 g and as much as 3 g. An ideal dose for one individual could be far too much for another. The preferred dosage varied with the sensitivity of the user and the desired effects:“ You might have to experiment with the dose a bit because what works for one person does not necessarily work for another.” The potency of the material and particular type of mushrooms also called for different dosage: “Around one gram of dried Cubensis is regularly used for a dose.” P. cubensis was the most common variety, but other species of mushrooms were also discussed: “With Psilocybe azurescens or Psilocybe cyanescens, 0,25 gram should be sufficient.”
The data contained a few discussions on various routes for administrating psilocybin, some suggested sublingual administration (ground up mushrooms under the tongue), and others preferred to mix the mushrooms with water or juice for drinking.
A preferred dosage of LSD had an interval between as less as 5 μg and over 150 μg, depending on personal preferences and if used occasionally or more frequently following a dosing regimen. It was common to use LSD quite infrequently; a few times a year was not an unusual practice: “Doses about once a year, started on 50ug and the same night re-dosed 50ug” and “ I think dosing 3-4 times a year will help me a lot”.
The dosage of LSA seeds was not extensively discussed, but it was suggested that around 50 seeds were needed for a full preventative dose, although it appeared more common to use less than 25 seeds and more frequently, following a dosing regimen. Mostly, the seeds were ingested whole, but occasional reports used various techniques to extract the active substances.
Exact dosages were mostly not defined regarding DMT, but usually a “full dose” was reportedly required for therapeutic effects on migraines or CH: “It would seem that a complete breakthrough hit is needed for a cure.” Also, for DMT, it was suggested that singular or infrequent dosage could have potential long-term beneficial effects on headache disorders: “Even a single dose, or perhaps a couple, can be a lifelong benefit.”
Other synthetic novel tryptamines like 4-AcO-DMT, 4HO-DMT, and 4-AcO-MET had suggested sub-psychedelic therapeutic dosages around 2–3 mg and 5-MeO-DALT around 12–15 mg.
Any particular dosage or administration methods for cannabis were not discussed; however, it was proposed that higher doses could have a triggering, rather than alleviating, effect: “Increase in migraine/headache intensity always goes hand in hand with an increase in dosage.” Also, the timing of cannabis use in relation to the attacks was discussed as a factor for successful treatment. Typically, it was recommended to use cannabis immediately when sensing the onset of an episode.
The few reports on lidocaine (Xylocaine) used doses around 25–30 mg in 5% solutions that were administrated through the nasal passage. One report suggested 500 mg taurine in a gel cap. Taurine was otherwise mostly used in energy drinks, and exact doses were not specified in the reports.
Effects and treatment results
Effective treatment results, for both acute and prophylactic treatment, were reported for several of the substances concerned. (Adverse effects are discussed in the following theme.) Pre-eminently, the psychedelic tryptamines were described as remarkably effective and constituted a majority of the reports. For prophylactic treatment of CH, the psychedelic tryptamines were typically seen as the primary realistic option: “Only psychedelic treatments are shown to stop the recurrence of the cluster cycle.”
Overall, LSD and psilocybin were reported as highly effective for both CH and migraines. Both substances were reportedly effective for prophylactic as well as acute treatment. However, according to several reports, LSD possibly exhibits even higher potential for treating CH. The therapeutic potential of vaporized or smoked DMT seemed a bit more uncertain or complex compared to LSD or psilocybin: “DMT often helps, but sometimes makes it worse.” In one case, a full dose of DMT was effective and reportedly provided lasting prophylactic effects when all else (conventional medication, LSD, psilocybin, and so on) had failed: “For the first time in years, literally, I was not waking up with migraines anymore. Something happened in my brain that day.”
LSA seeds were said to have similar, but possibly less, effects than LSD and psilocybin: “HBWR seeds are not as useful as mushrooms.” The lack of results for some LSA users was sometimes accredited to the high variability in the potency of seeds, not always effective extraction techniques, and a tendency for under-dosing the seeds: “LSA was not actually working, I think I dosed too low, only used a few seeds at a time.” Seeds from R. corymbosa were described as the most efficient LSA containing seed, tough, successful treatment results were reported from other varieties as well: “I started to bust RC seeds and.....miracle. I can say that a total of 2 months of clusters in 5 years is an incredible success”.
Although not as prevalent as LSD or psilocybin, several other synthetic psychedelic tryptamines were discussed and reported as effective treatment alternatives: “I have had great success with acute treating of CH-attacks with 4-HO-MET, 4-AcO-DMT, 4-HO-MiPT, and 5-MeO-MiPT”. The LSD-analog AL-LAD had one report where it was effective for acute migraine treatment.
Microdosing was commonly reported as an effective treatment strategy, not only using psilocybin and LSD but also other psychedelic tryptamines like 4-ACO-DMT and 4HO-DMT. Microdosing appeared to be used for prophylactic effects primarily. Microdosing was reportedly a successful approach for most sufferers, but a few seemed to need fuller doses to have sufficient effects: “My partner could get away with taking sub-hallucinogenic doses to treat her cluster headaches, whereas I need a hallucinogenic dose to abort a migraine, which is unfortunate.”
The “busting” dosing regimen appeared to be an effective strategy for many sufferers: “Thank gosh busting preventatives are working.” Those using the “busting method” reported both acute and preventive treatment results, although it was described as crucial to follow a cyclic dosage scheme to obtain long-term results. Relapses were reported when the dosing regimen was not followed consistently: “Mostly pain-free, except for when I did not take my proper preventative dose.” The busting method was reportedly effective with LSD, psilocybin mushrooms, and various kinds of LSA containing seeds.
There were occasional reports where sufferers did not find relief or any beneficial effects from psychedelics at all. However, in these few cases, there was typically an uncertainty about dose or the potency of the material, and they were often based on single or a few treatment sessions: “I attempted to stop a cluster with what I thought would be an active (and my only) dose of mushrooms.”
The effects of self-treatment with cannabis appeared more contradictory and complex than other substances discussed. While some described expedient relief from the use of cannabis, others reported no benefits and some even found that cannabis could potentially trigger or intensify attacks (see the “Adverse effects” section). “I found out marijuana is awesome for migraines”/“It has done nothing.” Prophylactic long-term effects of regular cannabis use on migraines (not CH) with a lessening in the frequency of attacks were reported: “The weed actually does 100% keeps the tension migraines away for 2-3 months”. Facilitating sleeping during attacks and managing pain were other reported uses for cannabis. Also, it was described how the effects of cannabis served as a distractor from pain and other unpleasant sensations: “Weed helps me to sleep”/“Even when it does not cure the pain, it significantly lessens my care factor about it.”
One report described how cocaine could sometimes be used to stop ongoing CH attacks but did nothing to cure or reduce the frequency of episodes. Caffeinated energy drinks with taurine could also alleviate immediate symptoms: “Regarding Redbull, yes it works.” Melatonin was also occasionally discussed, but no alleviation of pain, or improvement of the conditions, was reported: “Melatonin did nothing for me.”
Adverse effects
No severe adverse effects were reported, but there were some accounts of discomfort and temporarily increased symptoms and also some possible cases of remaining anxiety.
When using psilocybin, LSD, or DMT as an acute treatment, it was sometimes said to intensify pain and other symptoms initially, before any mitigating or preventative effects on CH or migraines were noticed: “I thought that the mushrooms hadn’t helped and I was back to where I started. But I haven’t had a headache since that night.” Psilocybin use was occasionally reported to cause anxiety or panic attacks. On the other hand, these adverse effects were also described as manageable by a more infrequent dosage interval by some of the same users: “I found that if I didn’t take shrooms more than once a month, I didn’t get anxiety.”
There were a few discussions on how treating migraines with LSD could increase the risk of developing sensory disturbances (hallucinogen-persisting perception disorder (HPPD)), especially for the sufferers of migraines with aura: “Seems people who have migraines with aura have a higher degree of HPPD after taking LSD.” However, no actual personal reports describing HPPD were present in the data.
A few reported increased perspirations and problems with focus and unexpected emotional experiences from microdosing with LSD or psilocybin, a: “I got the sweating too.” However, those experiencing this kind of perspiration were not sure if the sweating was accurately seen as an adverse effect. Since microdosing was often seen to produce beneficial effects like elevated mood, increased productivity, and an overall feeling of improved health, it was speculated that increased perspiration might be a part of some beneficial bodily process: “I am unsure whether the sweating was part of healing or just a quirky side effect.” The reports on the use of LSA containing seeds mentioned slight nausea but no other side effects.
For a few, cannabis appeared to trigger attacks potentially: “I get migraines/headaches almost every time I smoke.” Discussions on timing, dosage (see the “Dosage and regimens” section), frequency, and method of administration and especially the strain (the type of cannabis) or the quality of the product were actualized concerning eventual adverse effects or lack of benefits from cannabis use. “Ditchweed gives me migraines”//“The buds were not cured properly....they are too green.”
