Views on Using Psychoactive Substances to Self-Manage Functional Neurological Disorder: Online Patient Survey Results

This survey study (n=980) assessed the perspectives of patients with functional neurological disorders (FND) (e.g. multiple sclerosis, stroke) on novel treatments like psychedelic therapy. 15% of respondents reported using illicit substances to manage their symptoms, with the majority experiencing no or minimal physical and psychological sequelae. 46% of respondents reported that they would be willing to try medically supervised psychedelic therapy.

Abstract

Objective: Functional neurological disorder (FND) causes a high burden of disability and distress. Although it is a common disorder, there is a pressing need for improved access to evidence-based treatments. With difficulties in finding effective treatment, some people with FND may seek alternative means of symptom relief, such as legal and illicit psychoactive substances, although the prevalence and nature of such self-management strategies are currently unclear. Additionally, psychoactive substances may represent novel treatment research opportunities, particularly for those with suboptimal improvement. The investigators examined the use of self-management techniques, as well as perspectives on novel therapies, in this patient population.

Methods: An online survey was created to assess self-management strategies and views on novel treatments for FND, including psychedelic therapy. The survey was accessible for 1 month, and respondents were recruited internationally through social media and patient groups. A total of 1,048 respondents from 16 countries completed the survey.

Results: Almost half (46%) of 980 respondents reported having tried legal psychoactive substances for the management of their FND symptoms and, on average, nicotine, alcohol, and cannabidiol were reported as modestly effective. Additionally, 15% of respondents reported having used illicit substances, mostly cannabis, to manage FND, with the majority reporting moderate effectiveness and experiencing no or minimal physical (90%) and psychological (95%) sequelae. Many respondents (46%) reported that they would be willing to try medically supervised psychedelic therapy (with 19% of respondents ambivalent) if it were found to be safe and effective.

Conclusions: Many people with FND seek alternative means of symptom management outside usual medical care, including legal and illicit psychoactive substances. Further research exploring novel treatment options, such as psychedelics, in FND may be warranted.

Authors: Matthew Butler, Mathieu Seynaeve, Abigail Bradley-Westgaurd, Jianan Bao, Ania Crawshaw, Susannah Pick, Mark Edwards, Timothy Nichols & James Rucker

Summary

Functional neurological disorder (FND) is a neurological disorder that causes altered access to voluntary movement control and/or normal sensory perception.

FND is currently treated with psychological therapy and physical therapy. However, there is limited evidence for the use of pharmacological therapies for FND, and there is an urgent need to develop new treatment approaches.

People with FND may seek alternative treatments and self-management strategies, including legal and illicit substances, despite potential risks. Some psychoactive drugs may help with symptoms, either directly or via an effect on common comorbidities.

Some people use illicit substances outside of medical settings for control of symptoms in neuropsychiatric disorders, such as multiple sclerosis and treatment-resistant cluster headaches.

There has been renewed medical research interest in the medical use of psychoactive substances, such as psychedelics, MDMA, cannabis, and ketamine, as treatments for neuropsychiatric disorders, and it has been suggested that ketamine, MDMA, and psychedelics may have therapeutic potential in FND.

In the present study, we explored the use of illicit psychoactive substances to manage symptoms in patients with FND and examined the acceptability of these substances as treatments.

Respondents

Respondents were recruited through social media and patient support groups, but diagnoses could not be clinically verified.

Design and Materials

A cross-sectional, observational survey study was created and shared, and open access spanned over 1 month (September – October 2019). Questions were written in plain English, avoiding medical jargon where possible.

Respondents were asked about their use of strategies to manage their symptoms, including legal substances and illicit substances, and if they would consider psychedelic therapy.

Respondents were asked to rate the effectiveness of interventions or strategies using a visual analogue scale. Mutually incompatible answers were removed from the data set.

Respondent Characteristics

A total of 1,162 respondents from 16 countries completed the survey. The mean age of the respondents was 42.5 years, and the mean time from first FND symptom to diagnosis was 5.4 years.

Self-Management: Legal Substances

Respondents reported that CBD was extremely effective in the management of FND symptoms, and caffeine was more likely to be reported among those who currently took prescription medication.

Self-Management: Illicit Substances

Among patients with FND, 79/979 (8%), had used prescription medication obtained without a prescription, and 329/978 (34%) had considered using illicit substances to treat FND symptoms.

151/978 respondents reported using illicit substances to self-manage FND symptoms. Use of illicit substances was not significantly related to whether respondents had taken prescribed medication.

Most respondents who had used illicit substances reported experiencing no or minimal physical or psychological sequelae, but all were rated as having at least “some” psychological or physical complications.

Respondents rated the effectiveness of illicit substances on their FND symptoms as follows: cannabis, ketamine, amphetamines, cocaine, MDMA, and psychedelics.

Respondents were asked whether they would be willing to consider using psychedelic substances in a medically controlled setting to treat FND symptoms. 46% were willing, 35% were unwilling, and 19% were ambivalent.

Legal Psychoactive Substances

Nearly half of the respondents indicated that they had used legal psychoactive substances to manage or cope with symptoms, and rated these substances to have a modest effect on FND symptoms.

In the present study, 8% of patients indicated that they had accessed prescription medication without a prescription. Self-medication has several drawbacks, including lack of monitoring, use of ineffective or harmful substances, and risk of dependence.

Illicit Psychoactive Substances

In our survey, 15% of respondents reported having used illicit substances to manage their symptoms, primarily cannabis. This proportion appears to be similar to that in the general population.

In our survey, few respondents reported severe physical and psychological complications after taking cannabis, cocaine, or MDMA. We cannot draw any clear conclusions on the effectiveness of illicit substances based on these data.

The placebo effect may be a common feature relevant to the use of psychoactive substances in treating symptoms, and may be mediated by the brain’s “placebo network” which overlaps with regions implicated in the neurobiology of FND.

Cannabis contains numerous psychoactive cannabinoids that act on the cannabinoid receptors in the CNS. Some patients with functional neurological disorders have reported good results with the use of cannabinoids, and this may be of interest as an area for future research.

Cocaine is a stimulant and euphoriant substance that primarily exerts effects via inhibition of presynaptic dopamine reuptake. There have been no previous studies examining the effects of cocaine on any neuropsychiatric disorder, including FND.

Amphetamines are stimulants that exert effects via dopamine and norepinephrine transporter inhibition. Nine respondents indicated that they had used amphetamines for their FND symptoms, with a reasonable degree of effectiveness.

In older studies, intravenous methylamphetamine administration was described, with some success reported in case studies and series on FND. However, very limited conclusions can be drawn from these studies.

MDMA is a euphoriant and empathogenic substance that may exert its effects via serotonin release and reuptake inhibition. It has been shown to have potential efficacy in trauma-based psychopathologies such as PTSD.

One respondent reported severe psychological and physical adverse effects, but this may be due to the fact that drugs sold as MDMA outside of clinical settings contain adulterants. Medically supervised MDMA therapy may warrant further exploration in neuropsychiatric conditions.

Ketamine is a dissociative anesthetic that acts as an uncompetitive N-methyl-D-aspartate receptor antagonist. It has recently undergone clinical trials for neuropsychiatric conditions such as depression and PTSD.

Ketamine therapy may be a novel therapeutic avenue in patients with FND, particularly in cases of motor FND and comorbid depression.

Classical psychedelics are partial serotonin 2A receptor agonists that have entheogenic and hallucinogenic properties. Many respondents reported minimal physical side effects and would be willing to try medically supervised psychedelic therapy if it were found to be safe and effective.

Some authors have suggested that psychedelic therapy may be an interesting area of exploration in FND, and others have suggested that trials of psychedelic therapy in conjunction with physiotherapy or psychotherapy could be a future option.

Strengths and Limitations

A large sample of respondents increased the representative value of the responses in this survey of self-management techniques in persons with FND.

This study had several limitations, including selection bias in patient participation toward those who were active online and those well enough to complete a large survey. Additionally, the study did not ask respondents whether they felt that using these substances had been harmful.

This survey relied on self-report of FND diagnosis, and participant answers were not objectively verified. However, we feel that the participant pool was unlikely to have featured significant numbers of non-FND patients.

The survey was sensitive in nature, and some respondents may not have answered all of the questions in full. Therefore, data on the subjective effectiveness of other illicit substances should be interpreted with extreme caution.

CONCLUSIONS

Previous data have indicated that novel pharmacological treatments may have promise in several neuropsychiatric disorders. Based on the current precedent and promising adverse-effect data, a pilot trial of psilocybin for FND may be a justifiable option for future research.