The use of illicit drugs as self-medication in the treatment of cluster headache: results from an Italian online survey

This online survey study (n=54) aimed to evaluate the use of illicit drugs for self-medication amongst individuals who suffer from cluster-headaches and found that cannabinoids, cocaine, heroin, LSD, LSA, and psilocybin were commonly used for such purposes. Although this was not the primary focus of the study, survey respondents reported a significant prophylactic effect from hallucinogenic agents even if consumed only on to three times per year, usually at subhallucinogenic doses.

Abstract

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.”

Authors: C. Di Lorenzo, G. Coppola, G. Di Lorenzo, M. Bracaglia, P. Rossi & F. Pierelli

Summary

We recently received a request for a prescription for an illicit hallucinogen by a patient with CH to treat his headache. We conducted a survey, carrying out direct interviews with CH patients, but only six had used illicit drugs exclusively for therapeutic purposes.

This study explored the use of illicit drugs for CH treatment among patients who were not using these substances for recreational purposes. The study collected data from online interviews and questionnaires that were anonymously entered into a database.

54 participants (35 men/19 women) confirmed using at least one illicit drug to treat CH, but did not consume any illicit drugs for recreational use within the previous year. The participants were classified as chronic, drug resistant, and had consulted at least three different headache specialists. They had tried subcutaneous sumatriptan, O2 therapy, and at least one prophylactic treatment. Only 3.6% of patients received suggestions from their physician on using illicit drugs, and 94.4% received suggestions from other patients or found recommendations on the Internet. Of the 54 participants, 34 used cannabinoids, 13 cocaine, and 8 intravenous heroin as abortive agents.

18 patients used psilocybin, 12 used lysergic acid amide, and 4 used lysergic acid diethylamide as prophylactic agents. 48 patients declared that they did not perceive illicit drugs as less safe than conventional medical treatments.

We identified the reasons why patients with CH used illicit drugs, as well as the substances consumed. The results should be interpreted with caution.

Most patients with chronic headaches who first used illicit drugs had tried all the first-line treatment options, but reported feeling abandoned by their physicians after learning of their illicit substance use. From the questionnaire, we identified six types of illicit drugs used by CH patients: cannabinoids, cocaine, heroin, LSD, LSA, and PSI. Patients reported a significant prophylactic effect from hallucinogenic agents even if consumed only on to three times per year, usually at sub-hallucinogenic doses.

Some patients with chronic headaches decided to use illicit drugs to treat their intractable headaches. However, randomized controlled trials with well-titrated medications by certified laboratories are needed to provide definitive answers about the effectiveness of illicit drugs as a treatment for chronic headaches.

Patients are choosing their physicians based on recommendations from other CH patients, which raises several questions regarding the interactions of physicians with CH patients.

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