The six resulting themes are presented below, along with some illustrative quotations.
A desperate need for effective treatments.
This topic provides insight into the difficulties suffered by those with migraines and cluster headaches, and the typical motivations for using alternative therapies.
The pain, caused primarily by CH but also by some migraines, was described as so excruciating and debilitating that sufferers were willing to “do anything” to alleviate it: “I fractured several bones and the cluster pain is an order of magnitude worse.” Suicidal thoughts and feelings were reported as a result of the intense suffering and despair caused by HC and severe cases of migraine. CH was sometimes labeled "suicide headache," and this was something very common for many sufferers: "I came very close to ending my life because of it."
It wasn't just during acute attacks that these conditions caused difficulties. The sheer worry about the next debilitating attack was linked to anxiety and stress disorders: "Many people who suffer from cluster headaches end up with PTSD." Furthermore, those suffering from chronic hypothyroidism and severe migraines expressed how the disorder, as well as secondary illnesses, complicated their daily life routines; Everything, from social contacts and work to the ability to enjoy various activities, was sometimes radically limited. Family and other relationships were also heavily affected: "Cluster headaches destroyed families, relationships, and marriages."
Patients with HC often felt they had been misdiagnosed by healthcare providers and that their condition was not being treated adequately. Conventional medical treatments have often been described as virtually ineffective for HC: "I tried everything without success, including ergot derivatives, opioids, anticonvulsants, NSAIDs, and so on." Several opioid-based analgesics were commonly prescribed for patients with CH, but were predominantly reported as inadequate or even as potential triggers for attacks: “Opioids did nothing.”/“Opioids may even trigger attacks, as I am sensitive to histamine as a trigger.” Problems with addiction to prescription opioids further discouraged the use of opioid therapy: "I'm 100 days sober without opioids for the first time in 5 years."
There have been some reports where medical personnel (i.e., doctors, psychiatrists) advised alternative or illegal treatments when current treatments were insufficient: "My psychiatrist suggested that psilocybin-containing mushrooms might help." Some reported prior use of illicit drugs, but those who never imagined using an illegal drug, or doing anything illegal, also sought alternative treatments out of sheer desperation: "I can't believe I resorted to this, but nothing else works."
The role of the forum - finding alternative treatments and community support.
This topic describes how individuals with chronic hypertension (CH) and migraine have used discussion forums to find and exchange information about alternative treatments and how to acquire the various substances used for this purpose. Furthermore, the forums were used as a platform to seek compassion, understanding, and companionship: "One of the worst things that overcrowded patients go through is the feeling of being alone." The support shared through these forums seemed to be highly valuable for this vulnerable population: "When there is no hope of finding professionals, online forums with people who have visited their own personal hell are sometimes all you have." Similarly, discussion forums were used by family members and dependents of individuals with chronic hypertension and migraine for support and information about these conditions.
Several users have found effective treatments through guidance from peers in these forums: "With advice from one of these specific forums, I found the miracle drug." The substances discussed were often entirely illegal and could only be obtained on the black market or produced by the company itself. Other substances, the so-called new psychoactive substances (NPS), are semi-legal and were typically acquired from publicly available online suppliers (grey market): "Several mail-order companies are supplying chemicals like these to the public." Some of the online drug providers (NPS) were recommended as being knowledgeable about CH and substances used as potential treatments. Some completely legal substances were also considered.
Even when illegality was a factor, the availability of the substances in question seemed relatively high. However, availability also varied somewhat depending on the legal situation in the respective country: "Being in Japan can add minor challenges." Some discussions revolved around how to circumvent the limitations of legal status in order to obtain various illegal drugs. For example, the use of online suppliers on the "darknet" was discussed as a way to acquire illicit substances that are difficult to find. Several sufferers emphasized the importance of changes in drug laws or making exceptions for certain substances and conditions: "I would really like to live 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 had experienced relief from various substances was apparent, the exchange of information was often nuanced and focused on minimizing harm and optimizing the effectiveness of self-treatments. : "Synthetic tryptamines don't have the same safety record for medicinal and spiritual use that mushrooms do, so promoting them to a beginner seems like a bad idea." Warnings have been issued regarding dangerous interactions with other drugs. Special caution was advised regarding the combination of prescribed antidepressants and serotonergic tryptamines: "Be aware that the more serotonin agonists she is taking, the greater the risk of developing serotonin syndrome."
Alternative treatment substances
A summary of the substances and treatment alternatives used for self-treatment of chronic hypothyroidism or migraine is presented below. Recommendations on how to avoid certain substances, foods, and other factors that can trigger attacks are also included in this topic.
Overall, forum discussions revolved around general descriptions of the use of psychedelic tryptamines (not always specifying which substance in particular) to cure or alleviate these disorders: "Using psychedelics to treat migraines." / "Treating cluster headaches with psychedelics."
Psilocybin, or psilocybin-containing mushrooms, was commonly used for migraines and cluster headaches: "I used magic mushrooms to abort my chronic migraines." / "I'm taking mushrooms to treat cluster headaches." The incentives and approaches to psilocybin use varied among patients; Some initially used psilocybin for purposes other than treating chronic hypothyroidism or migraines, but were also pleased to experience relief effects in those conditions. However, most users did not seem to prefer any psychoactive effect and were only seeking possible relief from their illness: "A toned-down version of a mushroom trip can be very desirable in many contexts."
LSD was a common and highly regarded substance for the treatment of CH and migraines, according to reports: "LSD may be the most effective of the psychedelic treatments." The data also described other substances related to LSD; 1P-LSD or AL-LAD has been mentioned as potential alternatives to LSD. Seeds from four different flower varieties, containing tryptamine. D -lysergic acid amide (LSA), as Rivea corymbosa , Argyreia nervosa (Hawaiian Baby Woodrose) or Ipomoea tricolor (Morning Glory) were also commonly used and recommended as a (primarily) legal and more readily available alternative.
Other psychedelic tryptamines have also been frequently discussed as possible treatment options. The attempt to self-medicate using N , N -Dimethyltryptamine (DMT), as well as several new synthetic tryptamines, has been described in various reports: “I have been administering 4-ACO-MET or 4-ACO-DMT to my girlfriend. She aborted level 10 migraine attacks in 30 minutes or less, which usually leave her screaming and incapacitated with pain. Certain synthetic tryptamines were sometimes preferred to psilocybin (mushrooms), since the psychoactive effects were perceived as more manageable: "4-HO-MiPT and 4-HO-MET are not as chaotic as mushrooms."
There were also some discussions about the use of 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 from the 2C family. Some also mentioned the use of combinations of prescription and non-prescription medications. The recommended administration of prescribed medications was sometimes altered, for example, by turning tablets into powder for use by nasal insufflation or by exceeding the prescribed dosage.
Cannabis has been commonly discussed for its potential to alleviate symptoms or decrease the frequency of migraine attacks. Some have used cannabis for unrelated purposes but have experienced additional benefits for headaches.
Other substances, briefly mentioned as possible treatment alternatives, were melatonin, opium, ketamine, cocaine, lidocaine, and MDMA. Furthermore, energy drinks containing caffeine (or taurine, which is present in most energy drinks) were mentioned: "Energy drinks - hit them right away when you feel the attack coming on." Vitamins and supplements were sometimes recommended, but not discussed extensively: "I'm getting amazing results with the D3 regimen." Other lifestyle factors, such as exercise, nutrients, and a healthy diet, were also discussed and suggested: "Lots and lots of plant-based foods, like broccoli or carrots and spinach."
Discussions about preventing episodes of chronic heart failure and migraine by avoiding certain "triggers" were present in the data. Alcohol, chocolate, fermented cheese, opiates, histamines, carbon monoxide, sumatriptan, phenethylamines (2C− substances), sudden drops in blood pressure, and climate changes were discussed among the suggested triggers to avoid: “Phenethylamines can trigger terrible migraines, especially of the 2C series”/“Sumatriptan caused me 51 attacks in 7 days.”
Dosage and regimens
The recommended dosages and discussions regarding dosage regimens are described in this section. The timing and routes of administration were discussed for some substances. Primarily, three different dosing approaches or regimens were reviewed and recommended: the cyclical “bursting” (or “clusterbuster”) method, frequent “microdosing,” or occasional single “full” doses.
Generally, self-treatment was implemented according to one of the dosage regimens. Busting (or the "clusterbuster" method) is an administration regimen in which psychedelic tryptamines are used in moderate to medium dosages and strategically timed to match the regular cyclical nature of cluster headache episodes: "The use of psilocybin as a way to cure or control cluster headaches, also known as bursting headaches." Dosage intervals may differ between individuals; One example was dosing every five days during a cluster cycle until the cycle ends. Preventive doses are often used before a cycle to prevent the onset of episodes or to reduce the intensity and/or frequency of attacks. Discussions regarding the "busting" administration regimen did not clarify the exact dosages, but it was generally suggested that it should be half the amount of a light recreational dose.
Microdosing was a related administration strategy that was frequently discussed and recommended. Microdosing is the practice of taking a sub-perceptual dose (a very small amount to produce typical "psychedelic" effects) of a substance: "The idea is to take enough to be effective against clusters without getting a significant trip." The substances most commonly used for microdosing were psilocybin, LSD, as well as LSA seeds and some synthetic psychedelic tryptamines. Microdosing was used to avoid significant psychoactive effects, allow for more frequent use, and prevent adverse effects: "Research so far seems to indicate that microdosing is not harmful or dangerous." Since the apparent psychoactive effects did not disrupt daily routines, microdosing was sometimes preferred to the burst regimen. " I used the busting method for years, but I switched to microdosing, which is much easier for me to manage."
When a specific dosage regimen was not used, it was typical to employ higher doses, but only once or occasionally. For some individuals, "higher" or "full" doses have been reported to produce therapeutic effects. However, a "step-up" approach was typically recommended, starting with a small dose and gradually increasing the dosage until the desired effects were achieved.
A reference dose for occasional single doses of psilocybin was approximately 1 g. Psilocybe cubensis dry weight, but could vary between 0.25 g and 3 g. An ideal dose for one individual may be too much for another. The preferred dosage varied according to the user's sensitivity and the desired effects: "You might have to experiment a bit with the dose because what works for one person doesn't necessarily work for another." The potency of the material and the specific type of mushroom also required different dosages: "About one gram of dried Cubensis is regularly used for a dose." P. cubensis It was the most common variety, but other mushroom species were also discussed: "With Psilocybe azurescens or Psilocybe cyanescens, 0.25 grams should be sufficient."
The data included some discussion about various routes of psilocybin administration; some suggested sublingual administration (ground mushrooms under the tongue), while others preferred mixing the mushrooms with water or juice to drink.
A preferred dosage of LSD ranged from less than 5 μg to more than 150 μg, depending on personal preference and whether used occasionally or more frequently following a dosage regimen. It was common to use LSD infrequently; Doing a few times a year was not an uncommon practice: "Dosing about once a year, starting with 50ug and re-dosing 50ug on the same night" and "I think dosing 3-4 times a year will help me a lot."
The dosage of LSA seeds has not been extensively discussed, but it has been suggested that around 50 seeds would be needed for a full preventative dose, although it seems more common to use fewer than 25 seeds and more frequently, following a dosing regimen. Most of the time, the seeds were ingested whole, but occasional reports used various techniques to extract the active substances.
The exact dosages for DMT were mostly not defined, but generally a "full dose" was supposedly necessary for therapeutic effects in migraines or HC: "It seems that a full hit is necessary for a cure." Furthermore, for DMT, it has been suggested that single or infrequent dosing could have potential long-term beneficial effects on headache disorders: "Even a single dose, or perhaps a couple, may be a lifelong benefit."
Other novel synthetic tryptamines such as 4-AcO-DMT, 4HO-DMT, and 4-AcO-MET have suggested subpsychedelic therapeutic dosages around 2–3 mg, and 5-MeO-DALT around 12–15 mg.
No specific dosages or methods of cannabis administration were discussed; However, it has been suggested that higher doses could have a triggering effect, rather than a relieving one: "Increased migraine/headache intensity always goes hand in hand with increased dosage." Furthermore, the timing of marijuana use in relation to the seizures was discussed as a factor in the success of the treatment. It was typically recommended to use cannabis immediately upon detecting the onset of an episode.
The few reports on lidocaine (xylocaine) used doses of around 25 to 30 mg in 5% solutions, administered nasally. One report suggested 500 mg of taurine in a gel cap. Taurine was primarily used in energy drinks, and the exact dosages were not specified in the reports.
Effects and results of treatment
Effective treatment results, both for acute and prophylactic treatment, have been reported for several of the substances in question. (Adverse effects are discussed in the following section.) Notably, psychedelic tryptamines have been described as remarkably effective and constituted the majority of reports. For the prophylactic treatment of CH, psychedelic tryptamines were typically seen as the main realistic option: "Only psychedelic treatments have been shown to interrupt the recurrence of the cluster cycle."
Overall, LSD and psilocybin have been reported as highly effective for CH and migraines. Both substances have been reported to be effective for prophylactic treatment as well as acute treatment. However, according to several reports, LSD possibly exhibits even greater potential for the treatment of CH. The therapeutic potential of vaporized or smoked DMT seemed somewhat more uncertain or complex compared to LSD or psilocybin: "DMT usually helps, but sometimes it makes things worse." In one case, a full dose of DMT was effective and reportedly provided lasting prophylactic effects when all others (conventional medications, LSD, psilocybin, and so on) failed. : "For the first time in years, literally, I wasn't waking up with migraines anymore." Something happened in my brain that day.
It was said that LSA seeds had similar, but possibly lesser, effects than LSD and psilocybin: "HBWR seeds are not as useful as mushrooms." The lack of results for some LSA users was sometimes attributed to the high variability in seed potency, extraction techniques that were not always effective, and a tendency to underdos the seeds: "LSA wasn't really working, I think I dosed too low, I only used a few seeds at a time." Seeds of R. corymbosa They were described as the most efficient and resistant seeds containing LSA; successful treatment results were also reported from other varieties: “I started popping 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 have been discussed and reported as effective treatment alternatives: "I have had great success in the acute treatment of CH attacks with 4-HO-MET, 4-AcO-DMT, 4-HO-MiPT and 5-MeO-MiPT." The LSD analogue AL-LAD has been reported to be effective in treating acute migraine.
Microdosing has been commonly reported as an effective treatment strategy, not only using psilocybin and LSD, but also other psychedelic tryptamines such as 4-ACO-DMT and 4HO-DMT. Microdosing appears to be used primarily for prophylactic purposes. Microdosing was reportedly a successful approach for most patients, but some seemed to need fuller doses to get sufficient effects: “My partner could get away with taking sub-hallucinogenic doses to treat her cluster headaches, while I need a hallucinogenic dose to abort a migraine, which is unfortunate.
The "bursting" dosage regimen seemed to be an effective strategy for many sufferers: "Thank God, the preventatives are working." Those who used the "busting method" reported both acute and preventative treatment results, although following a cyclical dosing schedule was described as crucial for achieving long-term results. Relapses were reported when the dosage regimen was not followed consistently: "Almost no pain, except when I didn't take my proper preventive dose." The bursting method was reportedly effective with LSD, psilocybin mushrooms, and various types of seeds containing LSA.
There have been occasional reports in which sufferers found no relief or any beneficial effect from psychedelics. However, in those few cases, there was typically uncertainty about the dose or potency of the material, and they usually relied on one or a few treatment sessions: “I tried 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 to be more contradictory and complex than those of other substances discussed. While some described rapid relief from using cannabis, others reported no benefit, and some even found that cannabis could trigger or intensify attacks (see the section “ Adverse effects (section). "I discovered that marijuana is great for migraines" / "It did nothing." The long-term prophylactic effects of regular cannabis use on migraines (non-HC) with a decrease in the frequency of attacks have been reported: "The herb really keeps 100% of tension migraines away for 2-3 months." Facilitating sleep during seizures and controlling pain were other reported uses for cannabis. Furthermore, it was described how the effects of cannabis served as a distraction from pain and other unpleasant sensations: "Marijuana helps me sleep" / "Even when it doesn't cure the pain, it significantly reduces my pain-causing factor."
One report described how cocaine can sometimes be used to stop ongoing attacks of chronic hypochondriasis, but it did nothing to cure or reduce the frequency of episodes. Energy drinks with caffeine and taurine can also alleviate immediate symptoms: "Regarding Red Bull, it does work." Melatonin was also occasionally discussed, but no pain relief or improvement in conditions was reported: "Melatonin did nothing for me."
Adverse effects
No serious adverse effects were reported, but there were some reports of discomfort and temporary increase in symptoms, as well as some possible cases of lingering anxiety.
When using psilocybin, LSD, or DMT as an acute treatment, it was sometimes said that it intensified pain and other symptoms initially, before any alleviating or preventative effects on CH or migraines were noticed: “I thought the mushrooms hadn’t helped and I was back to where I started. But I haven't had a headache since that night. The use of psilocybin has occasionally been reported to cause anxiety or panic attacks. On the other hand, these adverse effects have also been described as manageable by a less frequent dosing interval by some of the same users: “I found that if I didn’t take mushrooms more than once a month, I didn’t get anxious.”
There has been some discussion about how treating migraines with LSD could increase the risk of developing sensory disturbances (hallucinogen persistent perception disorder (HPPD)), especially for those who suffer from migraines with aura: "It seems that people who have migraines with aura have a higher degree of HPPD after taking LSD." However, no actual personal report describing HPPD was present in the data.
Some have reported increased sweating, difficulty focusing, and unexpected emotional experiences from microdosing with LSD or psilocybin, such as: "I'm sweating too." However, those who experienced this type of sweating were unsure whether sweating was accurately viewed as an adverse effect. Since microdosing used to produce beneficial effects such as elevated mood, increased productivity, and a general feeling of improved health, it was speculated that increased sweating might be part of some beneficial bodily process: “I’m not sure if the sweating was part of the healing process or just a peculiar side effect. Reports on the use of seeds containing LSA mentioned mild nausea, but no other side effects. .
For some, marijuana seemed to potentially trigger attacks: "I get migraines/headaches almost every time I smoke." Discussions about timing, dosage (see section “ Dosage and schedules Information regarding the frequency and method of administration, and especially the strain (type of cannabis) or product quality, has been updated regarding potential adverse effects or lack of benefits of cannabis use. "Ditchweed gives me a migraine" // "The buds weren't cured properly...they're too green."
