Cannabis and Seizures: Questions to Consider

Originally published March 13, 2017

Updated August 1, 2018

Cannabis (also called medical marijuana) has been in the news a lot in the past 4 years. Anecdotal reports of its helpfulness in treating seizures have led to some controlled studies. This research is helping us learn more about its use and safety in epilepsy.

Cannabis-based treatment options are of great interest to the epilepsy community due to increased access to medical cannabis products in selected states. Also, the U.S. Food and Drug Administration (FDA) has recently approved Epidiolex for the treatment of seizures associated with two rare and severe forms of epilepsy, Lennox-Gastaut syndrome and Dravet syndrome. Epidiolex is approved for use in patients two years of age and older. It is a drug derived from the cannabis plant that is 98% made of cannabadiol or CBD.

Do we know enough yet?

Yes, we have results from studies that led to FDA approval of Epidiolex that are promising. These studies used a control group with some people taking a placebo while others were given CBD at different doses. Researchers did not know who was getting the placebo and who was getting CBD. These types of studies are called “gold standard” studies.  Overall, the studies showed that Epidiolex was effective in reducing seizures and was well tolerated.

Is cannabis safe?

I often hear people say, “It must be safe because it’s from a plant.” Guess what? Many medications start from plants! Cannabis is no different. Its safety needs to be tested just the way any other medicine is tested.

A couple of points worth noting:

• There are different substances in cannabis, some that could worsen seizures and some that may help. The side effects of different strains or substances vary too.
• It’s important to know what you are using or ingesting as different substances or strains could affect you differently. In addition, safety issues like the consistency of the cannabis product and whether it has been treated with pesticides are important to consider.
• The data from safety studies of Epidiolex should not be used to support safety of other cannabis products. Yet these results do show that side effects and drug interactions happen and need to be monitored carefully.
• The updated cannabis page on epilepsy.com by Dr. Patel shares findings from ongoing studies. Side effects and drug interactions seen so far are highlighted.

What should people do if they want to consider cannabis for epilepsy?

Here are a few thoughts or a “to do” list for people considering cannabis.

• Treat it as any option for treating seizures.
• Talk to your health care team treating your epilepsy first! Cannabis is not a minor thing – treat it and your body with respect and know what and how to use it.
• Ask questions and compare the pros and cons. What’s the chance it can help seizures versus side effects, possible drug interactions and could it worsen seizures?
• Know the laws in your area and check out the Epilepsy Foundation’s information on cannabis and legal/advocacy issues.
• When it’s used as part of a controlled clinical trial, a person will get a specific dose. If you are given a prescription for Epidiolex, you will also be given a specific dose. If you are using medical marijuana or cannabis on your own, you may not know what substance you are getting and how much to take. Talk to the manufacturer or dispensary for instructions, but keep in mind these instructions probably have not been scientifically tested.
• Keep track of your seizures, side effects, and any other health events. Record use of the cannabis or medical marijuana too, so this data can be looked at together. Use a written seizure diary or the online Epilepsy Foundation My Seizure Diary to help you keep track of all this.
• Tell your epilepsy team or person treating your epilepsy about all substances you take. They may not be able to prescribe cannabis or adjust doses, but may be able to help monitor it, especially if any drug interactions happen.

One More Point

Treating epilepsy needs to be individualized. This means that what works in one person doesn’t necessarily work on another person. Sharing experiences with other people can be very helpful in many ways. Yet people should be careful not to cross the line between sharing experiences and telling others how and what to do with their medical care.

We are all excited to see progress on finding new therapies to treat epilepsy. As more information becomes available, visit epilepsy.com to learn more. Our research section is another place to check out what is coming and being tested.

Our thanks to all the people who have or are participating in research on cannabis (and other potential treatments) and to the researchers and scientists devoted to this area.

With best wishes,

Patty Osborne Shafer, RN, MN