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

DOI: https://doi.org/10.1186/s12954- 017- 0186- 6

Abstract-Summary Treatment resistant cluster headache and migraine patients are exploring alternative treatments online.

The aim of this study was to improve comprehension regarding the use of non- established or alternative pharmacological treatments used by sufferers of cluster headaches and migraines.

The analysis resulted in six themes: a desperate need for effective treatments; the role of the forum—finding alternative treatments and community support; alterna- tive treatment substances; dosage and regimens; effects and treatment results; and adverse effects.

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The results provide an insight into why, how, and by which substances and meth-

ods sufferers seek relief from cluster headache and migraines.

Psilocybin, lysergic acid diethylamide, and related psychedelic tryptamines were reportedly effective for both prophylactic and acute treatment of cluster headache and migraines.

No severe adverse events were reported, but it was observed how desperation sometimes spurred risky behavior when obtaining and testing various treatment alternatives.

The forum discourse mainly revolved around maximizing treatment results and

minimizing potential harms.

Extended: 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.

Background There is currently a growing interest and some evidence supporting various comple- mentary or alternative medicine treatments of headache disorders [557, 558].

A few studies, as well as extensive anecdotal support, have indicated the effec- tiveness of psychedelic tryptamines for the treatment of both CH and migraines [557–563].

Some reports on the non-psychoactive LSD analog BOL-148 have shown equally promising results for the treatment of cluster headache with similarly reported low rates of adverse effects [558, 564–566]. A few published studies [561, 567] and rich anecdotal supports also indicate the effectiveness of cannabis for allevi- ating headaches, but to our knowledge, no proper clinical trials are currently available.

This overlap is present to a high degree amongst the headache disorder patient groups exploring alternative treatments online as these discussions commonly focus on medicating with various psychoactive substances.

The aim of this study was to improve comprehension regarding the use of non- established or alternative pharmacological treatments used by sufferers of cluster headaches and migraines.

Methods To find suitable forums, Google searches using the keywords “cluster headache discussion forums” and “migraine discussion forums” were conducted on April 18, 2016, and supplemented by a search with keywords “drug discussion Forum” on April 19, 2016.

A total of 10 websites contained discussion forums and gave hits on searches

with keywords “cluster,” “headache,” or “migraine.”

The internal search function of the forums was then used to perform the searches

utilized for the collection of data.

To limit the data to a manageable size, the selection was restricted to topics initi-

ated during the year prior to the search.

The collected reports were copied to a Word document (resulting in 56 pages of

data), and the coding was performed manually.

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3 Diagnosis

In the first phase, the data was thoroughly read and re-read several times before

initial coding.

The themes and coding were also approved by two additional researchers expe-

rienced in thematic analysis.

Results 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.”

Any particular dosage or administration methods for cannabis were not dis- cussed; 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.”

Although not as prevalent as LSD or psilocybin, several other synthetic psyche- delic 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”.

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.”

Discussion The few individuals reporting no therapeutic effects from psychedelic tryptamines at all had typically only used these substances once or very few times.

Several reports in the present study indicated that new and unknown substances

(NPS) were used when LSD was hard to obtain.

No severe adverse effects were noticed from attempted self-medication with

these substances, but the long-term effects of such use are not known.

The non-hallucinogenic ergot derivative, methysergide, was reported to be mostly ineffective for treatment of CH in the present study, and previous studies have indicated similar results [558].

The psychedelic tryptamines were often reportedly effective at sub-psychoactive

doses, both in the present study and previous studies.

No self-therapeutic use of BOL-148 was reported in the present study, most

likely because of the unavailability of this substance.

Conclusions Largely, this interest focuses on the use of the currently illegal psychoactive trypt- amines, mainly psilocybin, LSD, and related substances.

This population exposes themselves to risk by self-experimenting with illegal or

sometimes new and unknown psychoactive substances.

This study also highlights the importance of the reciprocal knowledge produc- tion process and harm reduction content emerging from interactive drug forum discussions.

Acknowledgement A machine generated summary based on the work of Andersson, Martin; Persson, Mari; Kjellgren, Anette. 2017 in Harm Reduction Journal.

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Patterns of medicinal cannabis use, strain analysis, and substitution effect among patients with migraine, headache, arthritis, and chronic pain in a medicinal cannabis cohort