Most epilepsy patients using marijuana in Oregon did so for seizures and believed it helped, but almost none knew their dose | Research

The takeaway

Among 39 epilepsy patients surveyed in Oregon, 87% used cannabis specifically for seizures, 82% agreed it improved seizure control, but only 2 of 39 could state their actual dose in milligrams, and most used multiple cannabis forms.

Epilepsy patients using cannabis, their neurologists, and anyone interested in the reality of self-medicating with dispensary cannabis.

87% used cannabis for seizures; only 2 of 39 knew their dose in milligrams

What the researchers found

87.2% used cannabis to treat epilepsy. 82% agreed it improved seizure control. Most common strains: high-CBD (30.8%) or multiple types (30.8%). Methods: smoking (66.7%), edibles (48.7%), concentrates (43.6%). Only 2/39 knew their dose. Fewer women used primarily THC (10% vs 47% of men).

Why it matters

Even as pharmaceutical CBD (Epidiolex) gained FDA approval, epilepsy patients were already self-treating with dispensary products. The near-universal inability to state doses highlights a fundamental safety gap between pharmaceutical and dispensary cannabis.

The numbers in context

39 cannabis-using epilepsy patients. 87.2% used for seizures. 82% agreed it helped. Only 2/39 knew their dose. High-CBD: 30.8%. Multiple types: 30.8%. Smoking: 66.7%. Edibles: 48.7%. Women vs men using THC-dominant: 10% vs 47%.

How the study worked

Nine-item survey of patients seen in an epilepsy clinic over 9 months at a tertiary care center in Oregon, where recreational cannabis was legalized in 2015.

What this study cannot tell us

Small convenience sample from one clinic. Self-reported seizure improvement without objective seizure diary data. Survey design limits depth of response. Oregon-specific population.

How to read the evidence

Preliminary: small single-clinic survey with self-reported outcomes.

When this study was published

Published in 2019.

The bigger picture

The fact that only 5% of epilepsy patients using cannabis could specify their dose is a stark illustration of the gap between medical claims about cannabis and medical-grade practice. This is the fundamental tension of cannabis as medicine: patients believe it works, but they cannot dose it like a medicine.

Questions still open

How does patient-perceived seizure improvement compare to objectively measured seizure frequency? Would standardized dosing guidance improve outcomes? Should epilepsy clinics provide cannabis counseling alongside seizure management?

Common questions

Do epilepsy patients find cannabis helpful?

In this survey, 82% of cannabis-using epilepsy patients agreed it improved seizure control. However, this is self-reported without objective seizure counting, and almost none could specify their dose, making it impossible to evaluate dosing relationships.

What cannabis products do epilepsy patients use?

Most commonly high-CBD strains or multiple types. Two-thirds smoked cannabis, about half used edibles, and 44% used concentrates. There was a notable sex difference: far fewer women used THC-dominant products compared to men.

Read the original research

Marijuana use among patients with epilepsy at a tertiary care center.

Epilepsy & behavior : E&B, 97, 144-148

View on PubMed ↗Publisher’s paper ↗

Citation

Kerr, Alysse; Walston, Victoria; Wong, Victoria S S; Kellogg, Marissa; Ernst, Lia. (2019). Marijuana use among patients with epilepsy at a tertiary care center.. Epilepsy & behavior : E&B, 97, 144-148. https://doi.org/10.1016/j.yebeh.2019.05.037