In an Italian online survey of 54 cluster headache patients, a substantial proportion reported using illicit drugs—most commonly cannabinoids, but also cocaine, heroin and psychedelics such as psilocybin, LSA and LSD—for self‑medication after dissatisfaction with conventional treatments. Many sourced recommendations online, often ceased medical care, underestimated legal and safety risks and did not inform their physicians.
Background
Cluster headache (CH) patients often receive unsatisfactory treatment and may explore illicit substances as alternatives. We aimed to explore this use of illicit drugs for CH treatment.
Methods
We invited CH patients from an Internet-based self-help group to complete a questionnaire regarding their therapeutic use of illicit substances.
Results
Of the 54 respondents, 29 were classified as chronic and 39 were drug-resistant cases. Fifty patients had previously tried subcutaneous sumatriptan, 40 had tried O2, and 48 had tried at least one prophylactic treatment. All 54 patients specified that they were dissatisfied with conventional treatments. Thirty-four patients had used cannabinoids, 13 cocaine, 8 heroin, 18 psilocybin, 12 lysergic acid amide (LSA), and 4 lysergic acid diethylamide (LSD).
Discussion
Some patients with intractable CH decided to try illicit drugs concomitantly with cessation of medical care. Most of these patients found suggestions for illicit drug use on the Internet. Many patients seemed to underestimate the judicial consequences of, and had an overestimated confidence in the safety of, such illicit treatments. Physicians are often not informed by patients of their choice to use illicit drugs. This leads to questions regarding the true nature of the physician-patient relationship among dissatisfied CH patients.
Papers in Blossom that reference this study
Schindler, E. A. D., Sewell, R. A., Gottschalk, C. H. et al. · Journal of the Neurological Sciences (2024)
Butler, M., Seynaeve, M., Bao, J. et al. · Journal of Clinical Psychiatry and Clinical Neuroscience (2023)
Rusanen, S. S., Schindler, E. A. D., Artto, V. A. et al. · Current Pain and Headache Reports (2022)
Basedow, L. A., Kuitunen-Paul, S. · Drug and Alcohol Review (2022)
Cluster headache (CH) patients commonly seek both conventional and unconventional therapies and appear more prone than average to experimenting with illicit substances. Lorenzo and colleagues recount an unsolicited request from a CH patient for a prescription of an illicit hallucinogen and note that anecdotal literature has suggested benefit from hallucinogens, although randomised controlled trials are lacking. Initial local interviews of 110 CH patients identified only a small number who had used illicit drugs therapeutically, prompting the investigators to widen recruitment. To explore therapeutic use of illicit substances in a larger sample, the study team posted an invitation on the timeline of an Italian Facebook self‑help group for CH (more than 800 members) asking members to report experiences of using illicit drugs specifically to treat CH rather than for recreation. The stated aim was to identify which substances were used and what motivated patients to try these alternative treatments.
The researchers developed an online questionnaire collecting sociodemographic information, prior experience with conventional CH therapies, history of recreational illicit drug use, and lifetime use of illicit substances for CH treatment. The study received local ethics committee approval and the questionnaire was posted online during May and June 2014. Eligibility required a self‑reported diagnosis of CH by a neurologist (the diagnosis was not validated by the authors) and no recreational use of illicit drugs in the preceding year (self‑reported). Participants completed the online interview and data were entered anonymously. To protect confidentiality, the investigators deleted questionnaires and related emails from their computers and servers after data entry. The extracted text does not report any statistical analysis plan or other analytic methods, and the authors explicitly stated they did not intend to estimate the prevalence of illicit drug use for CH in the wider patient population.
Fifty‑four respondents (6.75% of the Facebook group members) reported lifetime use of at least one illicit drug to treat CH and stated they had not used these drugs recreationally within the previous year. The sample comprised 35 men and 19 women; 23 (42.6%) were married, 8 (14.8%) had a university bachelor’s or postgraduate degree, 46 (85.2%) were employed, and 43 (79.6%) reported household annual income below €36,000. Clinically, 29 participants (53.7%) were classified as chronic CH at the time they first used illicit drugs and 39 (72.2%) were described as drug‑resistant (refractory to all tried preventive pharmacotherapies). High health‑care use was reported: 41 patients (75.9%) had consulted at least three different headache specialists and 40 (74.1%) had more than ten headache‑related visits in their lifetime. Regarding conventional therapies, 50 patients (92.6%) had tried subcutaneous sumatriptan, 40 (74.1%) had tried oxygen therapy (dose and delivery method not reported), and 48 (85.7%) had tried at least one prophylactic treatment (dosages not reported); 25 (46.3%) had tried at least three different prophylactics. All respondents reported dissatisfaction with conventional treatments in terms of efficacy and/or tolerability. Only 3 participants (5.6%) said a physician had suggested illicit drug use; 94.4% reported receiving suggestions from other patients or finding recommendations on the Internet. Prior to first therapeutic use of an illicit drug, 24 patients (44.4%) had used illicit substances recreationally at least once; 22 (40.7%) informed their physician of their decision despite dissuasion, and 18 (33.3%) did not seek medical consultation before use. After starting illicit drug use for CH, 30 patients (55.6%) chose not to pursue further medical consultations; 19 (35.2%) disclosed their use to a physician, after which the physicians declared they were unable to continue care. Those denials did not generally lead patients to stop the illicit treatments. Reported therapeutic agents and patterns included 34 patients using cannabinoids, 13 using cocaine, and 8 using intravenous heroin as abortive treatments; 18 used psilocybin (PSI), 12 lysergic acid amide (LSA), and 4 lysergic acid diethylamide (LSD) as prophylactic agents. In two cases PSI, LSA, and LSD were reportedly used at sub‑hallucinogenic doses. The paper refers to a table with patients’ self‑reports of effectiveness (table not included in the extracted text). A small number of cases are noted in the extraction as reporting prophylactic effects from agents initially assumed to be abortive (three patients described a delay in clusters or bouts), and one patient reported sudden disappearance of pain after an infusion while others described only greater tolerability. Regarding perceived safety and legality, 48 patients (85.7%) did not view these agents as less safe than conventional treatments and 30 (55.6%) considered them safer; only 4 patients (7.4%) reported concern about legal consequences.
Lorenzo and colleagues describe this work as the first survey examining deliberate consumption of illicit drugs by patients to treat CH. They emphasise that the sample is not representative of the wider CH population and point to selection bias inherent in recruiting from a self‑help group, where members are likely to have more severe or treatment‑resistant disease and to seek alternatives. For that reason, the investigators did not attempt to estimate overall rates of illicit‑drug use for CH. The respondents were predominantly chronic and drug‑resistant cases with high consultation rates, and most had tried standard acute and prophylactic treatments despite incomplete reporting of dosing. All reported dissatisfaction with conventional care; many chose to try illicit drugs without medical advice or against physician recommendations. The authors highlight a concerning pattern in which disclosure of illicit use led some physicians to discontinue care, coinciding with patients abandoning conventional medical care and turning to peer and Internet advice. Six categories of illicit drugs were identified: cannabinoids, cocaine, heroin, LSD, LSA, and psilocybin. The authors refrain from asserting effectiveness from these self‑reports but note patterns: substances used as abortive agents (cannabinoids, heroin, cocaine) were often self‑rated as of low efficacy and carry risks of analgesic‑related dependence, whereas hallucinogenic agents were reported by some patients to have marked prophylactic effects even when used only one to three times per year and sometimes at sub‑hallucinogenic doses. The investigators stress that this survey cannot determine true efficacy and call for randomised controlled trials with well‑titrated, laboratory‑produced medications to provide definitive evidence. Legal and public‑health concerns are also discussed. The authors point out that patients may underestimate judicial risks and the potential for illicit drug purchases to fund organised crime; at the time of the survey Italian law remained restrictive and cannabinoids were not decriminalised. Key limitations acknowledged include reliance on self‑reported diagnoses not independently verified and the inability of the study design to yield efficacy estimates. The paper concludes by noting that some patients with intractable CH are choosing illicit treatments based on peer or Internet recommendations and that this trend raises unresolved questions about physician–patient interactions and the need for improved counselling when patients consider or use illicit substances for CH.
Cluster headache (CH) patients explore both conventional and unconventional treatmentsand are more prone to using illicit drugs. We recently received the unexpected request for a prescription for an illicit hallucinogen by a patient with CH to treat his headache. The effectiveness of hallucinogenic compounds has been supported by anecdotal scientific literature (4); however, controlled trials are still pending. To deepen our knowledge about patients' recourse to illicit substances for CH treatment, we conducted a survey, carrying out direct interviews with CH patients. However, of the 110 patients with CH present in our database, only six had used illicit drugs (cannabinoids) exclusively for therapeutic purposes. The limited number of patients with illicit drug use induced us to extend the study to reach a wider patient base. We therefore used an Internet-based community, according to previously published surveys on CH that used online questionnaires. Thus, we posted an alert on the ''time line'' of a selfhelp group of Italian patients with CH (with more than 800 members) who were active on Facebook (), inviting patients to tell us about their experience of using illicit drugs for CH treatment. The aim of our study was to explore the use of illicit drugs for CH treatment among patients who were not using these substances for recreational purposes. In particular, we were interested in identifying which substances were used and what induced patients to try this alternative treatment option.
We developed a questionnaire to elicit sociodemographic data, previous experience with conventional CH therapies, the recreational use of illicit substances, and the lifetime use of these illicit substances to treat CH. This study was approved by our local ethics committee. Patients were asked to respond to an online interview, or to complete the questionnaire that was posted online during the months of May and June 2014. Patients who were diagnosed with CH by a neurologist (the diagnosis was not validated by the authors) and had not used illicit drugs recreationally during the previous year (self-reported) were considered eligible for the study. After completion of the questionnaires, data were anonymously entered into our database. All questionnaires and emails were then deleted from the computers and servers to maintain the confidentiality of the participants.
Fifty-four patients (6.75% of the Facebook group members) confirmed using within their lifetime at least one illicit drug to treat CH. The participants stated that they had not used these drugs for recreational purposes, nor did they consume any illicit drugs for recreational use within the previous year. Of the 54 participants (35 men/19 women), 23 (42.6%) were married, 8 (14.8%) had a university bachelor's or post-graduate degree, 46 (85.2%) were employed, and 43 (79.6%) had a low household annual income (<36,000 E). From a clinical point of view, when the participants first used illicit drugs, 29 (53.7%) cases were classified as chronic, 39 (72.2%) were drug resistant (refractory to all tried preventive pharmacotherapies), 41 (75.9%) patients had consulted at least three different headache specialists, and 40 (74.1%) had a consultation rate (number of headache-related visits during their lifetime) of >10. Fifty (92.6%) of the participants had tried subcutaneous sumatriptan, 40 (74.1%) had tried O 2 therapy (dose and delivery method unknown), and 48 (85.7%) had tried at least one prophylactic treatment (dosage unknown; 25 (46.3%) had tried at least three different prophylactic treatments). All the participants reported that they were dissatisfied with conventional treatments in terms of their efficacy and/or tolerability. Regarding the use of illicit drugs, only three (5.6%) of the participants received suggestions from their physician on using these substances. The rest of the participants (94.4%) received suggestions from other patients or found recommendations on the Internet. Prior to their first consumption of the illicit drug, 24 (44.4%, 15 men) patients had previously used an illicit substance for recreational purposes at least once, 22 (40.7%) had told their physician about their decision to use illicit drugs, choosing to do so despite dissuasion from their physician, and 18 (33.3%) did not undergo a medical consultation before the use of illicit drugs. After commencing illicit drug use for CH treatment, 30 (55.6%) decided not to undergo further medical consultations; 19 (35.2%) told their physician about their illicit drug usage, after which their physicians declared that they were unable to provide continuing care. The denial of further treatment by the physician did not induce patients to stop the illicit drug treatments. Of the 54 participants, 34 used cannabinoids, 13 cocaine, and 8 intravenous heroin as abortive agents; 18 used psilocybin (PSI), 12 lysergic acid amide (LSA), and 4 lysergic acid diethylamide (LSD) as prophylactic agents. In 2 of the cases, PSI, LSA, and LSD were used at a sub-hallucinogenic dose. Patients' self-reports on the effectiveness of each substance are presented in Table. Following the use of illicit drugs for CH treatment, 48 patients (85.7%) declared that they did not perceive these agents as less safe than conventional medical treatments; 30 patients (55.6%) even considered their use of illicit drugs safer than conventional medical treatments. If required, these patients stated that they would recommend such illicit drug treatment to other patients. Only 4 patients (7.4%) reported that the illicit nature of their treatment generated some concerns regarding potential legal consequences.
This study is the first survey examining the consumption of illicit drugs by patients to treat CH. We identified the reasons that induced patients to resort to the use of illicit drugs, as well as the substances consumed. The responses of our sample are not representative of the whole CH patient population. Therefore, we need to interpret our results with caution. In fact, a selection bias could affect our observations due to the nature of the sample: Members of a self-help group are more likely to be patients with severe CH who are looking for alternative solutions to traditional treatment. Therefore, we did not include an estimation of the rate of illicit substance use for CH treatment as an aim of our study. At the time of their first use of illicit drugs, most of the CH cases were chronic and drug resistant, and participants had a high medical consultation rate. The majority of participants had tried subcutaneous sumatriptan, O 2 therapy, and at least one prophylactic treatment, although dosing information is unknown. All the participants reported their dissatisfaction with conventional medical treatments, even though not all of them had tried all the first-line treatment options. More than 50% of the patients reported that they had never tried illicit substances for recreational purposes and that their first contact with such substances was in response to their CH. The fact that most of the patients decided to try an illicit drug without (or against) medical advice could mean that their dissatisfaction with prescribed treatments had translated into a dissatisfaction with headache specialists and medicine in general. Our results describe a discouraging scenario in which patients with CH, despite a high consultation rate, did not receive all the first-line treatments, and reported feeling abandoned by their physicians after learning of their illicit substance use. We have no data to interpret these results, pending the physicians' version; however, it does highlight the problem of a physician-patient relationship that is interrupted just when the need for counseling is at its greatest. From the questionnaire, we have identified six types of illicit drugs used by CH patients: cannabinoids, cocaine, heroin, LSD, LSA, and PSI. It was not the aim of this study to discuss the self-reported treatment response rates of these substances. However, we would like to highlight the fact that patients who reported a low efficacy of illicit drugs largely used them as abortive therapies (cannabinoids, heroin, cocaine), although these substances are strongly related to both analgesic effectsand the development of dependence. On the contrary, patients reported a significant prophylactic effect from hallucinogenic agents even if consumed only on to three times per year, usually at subhallucinogenic doses. These results enrich the debate about the nature of patients' interest in using illicit drugs for CH treatment and appear to contradict the notion that these drugs were used for recreational purposes. In other words, it appears that individuals were not trying to experience the psychotropic effects of these drugs, but were trying to evaluate their Although initially assumed to be an abortive agent, three patients reported a prophylactic effect: one in terms of a cluster delay, two in terms of bouts of delay. b Only one patient experienced a sudden disappearance of pain after the drug infusion; the others only perceived the pain as more tolerable. effectiveness in terms of treatment of CH. Despite this, the problem of abuse/dependence on such substances remains a hot topic in this field. In fact, patients with CH are more prone to using illicit drugs for recreational purposes. Moreover, people with chronic migraines who overdose on medication are regarded as patients who have developed a substance abuse problem sustained by a genetic background. The final, critical point regarding illicit drug consumption is related to the associated legal issues. The illegal nature of these substances can lead to potential judicial consequences that patients often underestimate. In Italy at the time of the survey, there was a very restrictive law regarding the use and possession of illicit substances, and cannabinoids had yet to be decriminalized. Moreover, the purchase of these substances may often finance organized crime and illicit drug trafficking. There are certain limitations to the present study. The self-reported information collected regarding the CH diagnosis of patients was not clinically corroborated by the authors. However, this study was designed in line with other surveys previously conducted on patients with CH (5-7). Furthermore, our data cannot estimate the effectiveness of illicit drugs as a treatment for CH; randomized controlled trials with well-titrated medications by certified laboratories are needed to provide definitive answers about the effectiveness of illicit agents for CH treatment. In conclusion, some patients decided to use illicit drugs to treat their intractable CH. This option is usually selected based on recommendations from other CH patients obtained via the Internet, and coincides with the abandonment of conventional medical care. It is worrying that a patient would trust a stranger on the Internet rather than a well-known physician. This leads to several unanswered questions regarding the interactions of physicians with CH patients, and the approach taken to such discussions regarding illicit drug use.
. Drug-resistant cluster headache (CH) is a clinical challenge for physicians and a cause of frustration for patients. . Patients sometimes try alternative treatments, including illicit substances. . Patients' choice to use illicit drugs is driven by their dissatisfaction with conventional treatments. . There is much information about the use of illicit drugs as CH treatment available for anyone on the Internet. . Patients seemed to underestimate the judicial consequences and had an overestimated confidence in the safety of such treatments.
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