Cannabidiol (CBD), a chemical found in cannabis and hemp plants, has been used to treat epilepsy with varying levels of efficacy, according to research and anecdotal evidence. Here’s what you need to know about using CBD for epilepsy.
Epilepsy is a chronic neurological disorder that causes recurrent seizures. Seizures are marked by abnormal electrical activity in the brain. There is no cure for epilepsy, but there are a few ways to manage it.
- Cannabinoid: This is a type of chemical in cannabis and hemp plants. Dozens of cannabinoids, each with their own characteristics, are found in cannabis and hemp plants.
- Tetrahydrocannabinol (THC): This is a cannabinoid in hemp and cannabis plants that can make one feel intoxicated.
- Medical cannabis: Sometimes referred to as medical marijuana, this is cannabis recommended for medical purposes.
Recent research suggests that CBD can help people with epilepsy, although some people may experience side effects.
There is only one CBD-based epilepsy medication approved by the Food and Drug Administration (FDA): Epidiolex.
The FDA initially approved the use of Epidiolex to treat two rare forms of epilepsy, Lennox-Gastaut syndrome and Dravet syndrome, in people 2 and older. In 2020, the FDA approved Epidiolex for people 1 and older. It also approved of the use of Epidiolex to treat tuberous sclerosis complex, another rare seizure condition.
Since these seizure conditions typically affect children and teenagers, Epidiolex is usually prescribed for children with epilepsy.
But what exactly does it mean to have FDA approval? The FDA itself doesn’t test products. Instead, the product’s manufacturer conducts laboratory, animal, and human clinical testing. The FDA reviews these results. According to the FDA website, they grant an approval if they conclude that “the benefits of the product outweigh the known risks for the intended use.”
Randomized, double-blind, placebo-controlled studies are considered the “gold standard” of clinical trials because they reduce the chance of bias and include a control. Both of these studies were conducted on the effects of Epidiolex on Dravet syndrome and Lennox-Gastaut syndrome.
The studies suggested that Epidiolex reduces the frequency of seizures. However, they also noted there are potential side effects of Epidiolex.
Although CBD is the basis of Epidiolex, using store-bought CBD is not exactly the same as using Epidiolex. Because Epidiolex is a pharmaceutical product, it’s held to higher manufacturing standards than commercial CBD. Commercial CBD isn’t regulated by the FDA.
One recent study compared the effects of artisanal, or store-bought, CBD with that of pharmaceutical-grade CBD on people with epilepsy, and it highlighted the potential risks with opting for store-bought CBD over Epidiolex.
Those who took artisanal CBD had a 70 percent increase in seizures during the study period, while those taking prescription CBD had a 39 percent reduction in seizures.
It’s important to note that artisanal CBD can have varying levels of THC and may not undergo testing, which may have contributed to the increase in seizure activity.
This study had its limitations. It was a retrospective study — meaning it involved looking back at a patient’s history instead of following it over time. It was also a small study, with 31 subjects and only 9 taking artisanal CBD.
Medical cannabis may be effective in the treatment of epilepsy because it contains CBD. It’s not clear whether cannabis is better at reducing seizures than CBD alone.
More research needs to be done specifically on THC, the other major cannabinoid found in cannabis, as an anticonvulsant. In larger doses, THC may even have proconvulsant properties. THC may also be addictive and cause bad reactions for some people, especially if used in large quantities.
However, one 2018 meta-analysis compared the effects of pure CBD with CBD-rich cannabis extracts on treatment-resistant epilepsy. The meta-analysis concluded that CBD-rich cannabis extracts were actually more effective at reducing seizures than pure CBD.
However, as the authors pointed out, this will have to be explored by more study before any conclusions can be drawn.
Anecdotally, people have used CBD-rich cannabis for epilepsy. Because of the risks associated with THC, it’s important to discuss any treatments you take with a doctor who understands your medical history.
Epidiolex is an oral solution, which means that it’s a liquid placed in the mouth. The dosage of Epidiolex depends on factors like body weight and the severity of symptoms.
Usually, the following dosage is suggested for Epidiolex, based on your child’s body weight:
- Starting dosage: 2.5 milligrams per kilogram (mg/kg) taken by mouth twice daily
- Maintenance dosage: 5 mg/kg taken by mouth twice daily
- Maximum dosage: 10 mg/kg taken by mouth twice daily
However, it’s essential that you follow your doctor’s guidance on dosage.
Epidiolex can be expensive, and many insurance providers don’t cover it. Some people who aren’t able to access Epidiolex opt for artisanal, or store-bought, CBD. Common ways to use CBD for epilepsy include through tinctures and gummies.
Because there is no consensus on how much CBD one should use to prevent seizures, it’s essential to speak to a doctor about using CBD for epilepsy instead of attempting to self-medicate.
Are there risks of taking CBD for epilepsy?
Yes. There is a chance that CBD can cause side effects. In some studies, a few subjects actually experienced an increase in seizures after using CBD.
Can cannabis or CBD make seizures worse or more frequent?
In the 2020 study mentioned above, artisanal CBD was associated with a 70 percent increase in seizures, which may have been due to THC content. However, again, it’s worth noting that it was a retrospective study based on a patient’s medical history. The patients were not given CBD and observed over time.
During the clinical trials conducted on Epidiolex, some participants experienced side effects, including:
- decreased appetite
Epidiolex may lead to a change in liver function. In the two clinical trials on Epidiolex, the majority of people who pulled out of the study did so because of a change in liver function and because of feelings of sleepiness and lethargy.
According to research from 2017, the most common side effects of CBD are:
- change in appetite or weight
If you experience side effects, it’s a good idea to talk with your doctor.
CBD may interact with some medications, especially medications that have a grapefruit warning. CBD, like grapefruit, can affect the way your body processes certain medications.
Certain anti-epileptic drugs also carry a grapefruit warning, suggesting that it’s unwise to mix the two. If you have any concerns about potential drug interactions, speak to a pharmacist or healthcare provider.
CBD can also raise the serum levels of anti-seizure drugs. If you’re taking anti-seizure medications and are considering CBD, it’s important to speak with your healthcare provider before doing so.
If you can’t use Epidiolex but want to try CBD, it’s important to find high-quality CBD products.
Read product labels
One of the ways to ensure that you’re getting a good product is to read the product label carefully. If the product contains CBD, it will specify that it contains CBD or cannabidiol. Hemp oil and hempseed oil don’t necessarily contain CBD, though it’s important to do your research to determine what kind of product you’re getting.
If you read the product label, you might find flavorings, essential oils, and a carrier oil, such as grapeseed oil, hemp oil, coconut oil, cranberry oil, or olive oil.
The label should list the concentration of CBD in the product.
The label should suggest a dosage. But it’s more important that you stick to a doctor’s guidance on dosage instead of focusing on the label.
Look for certificates of analysis from third-party labs
Lab reports are where CBD concentrations can be verified. The most thorough analyses include testing for contaminants like heavy metals and pesticides.
Reputable companies should:
- have their products tested by an accredited lab that’s independent of the company
- make their lab reports, also known as certificates of analysis (COAs), available to potential customers
- avoid making medical claims on their website and packaging
These companies should also provide recent COAs for their products.
Talk with a knowledgeable medical professional
If you’re not sure which CBD brand to choose, ask a CBD-friendly doctor for guidance.
Many people use CBD and Epidiolex to manage epilepsy. It’s important to know that there are differences between artisanal, or store-bought, CBD products and Epidiolex, a CBD-based prescription medication.
Talk to a healthcare provider if you have epilepsy and would like to try CBD. If you decide to use CBD, it’s important to do your research to find a high-quality CBD product from a reputable company.