CBD products may help some people with epilepsy, but obtaining the right treatments can be difficult. An in-depth look at how CBD might benefit people with epilepsy or other seizure disorders, including the latest research, medical insights and potential risks. CBD Products May Help People with Epilepsy Better Tolerate Anti-Seizure Medications Johns Hopkins Medicine researchers have shown that CBD may reduce the adverse effects associated with
Epilepsy patients navigate a murky, unregulated CBD market
The products may help some people with the neurological disorder, but obtaining the right treatments can be difficult
CBD oils at Empire Standard, a hemp extract processing and distribution plant in Binghamton, N.Y. (Angela Weiss/AFP/Getty Images)
In 2013, Tonya Taylor says, she was suicidal because her epileptic seizures kept coming even though she was taking a long list of medications.
Then a fellow patient at a Denver neurologist’s office mentioned something that gave Taylor hope: a CBD oil called Charlotte’s Web. The person told her the oil helped people with uncontrolled epilepsy. The doctor, however, would discuss it only “off the record” because cannabidiol was illegal under federal law, and he worried about his hospital losing funding, Taylor said.
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The federal government has since legalized CBD, and it has become a multibillion-dollar industry. The Food and Drug Administration also has approved one cannabis-derived prescription drug, Epidiolex, for three rare seizure disorders.
But not much has changed for people with other forms of epilepsy like Taylor who want advice from their doctors about CBD. Joseph Sirven, a Florida neurologist who specializes in epilepsy, said all of his patients now ask about it. Despite the buzz around it, he and other physicians said they are reluctant to advise patients on over-the-counter CBD because they do not know what is in the bottles.
The FDA does little to regulate CBD, so trade groups admit that the marketplace includes potentially harmful products and that quality varies widely. They say pending bipartisan federal legislation would protect those who use CBD. But some consumer advocacy groups say the bills would have the opposite effect.
Caught in the middle are Taylor and other patients desperate to stop losing consciousness and having convulsions, among other symptoms of epilepsy. They must navigate the sometimes-murky CBD market without the benefit of regulations, guidance from doctors or coverage from health insurers. In short, they are “at the mercy and the trust of the grower,” said Sirven, who practices at the Mayo Clinic in Jacksonville, Fla.
Although the CBD industry is new territory for the FDA, people have used cannabis to treat epilepsy for centuries, according to a report co-written by Sirven in the journal Epilepsy & Behavior.
More than 180 years ago, Irish physician William Brooke O’Shaughnessy administered drops from a hemp tincture to an infant experiencing severe convulsions. “The child is now in the enjoyment of robust health, and has regained her natural plump and happy appearance,” O’Shaughnessy wrote at the time.
Much of the recent interest in CBD stemmed from the 2013 CNN documentary “Weed,” which featured Charlotte Figi, then 5, who had hundreds of seizures each week. With the use of CBD oil, her seizures suddenly stopped, CNN reported. After that, hundreds of families with children like Charlotte migrated to Colorado, which had legalized marijuana in 2012. Then in 2018, the federal government removed hemp from the controlled substances list, which allowed companies to ship CBD across state lines and meant families no longer needed to relocate.
CBD For Seizures: Benefits, Risks And More
Dr. Jessica Cho practiced medicine with a single mission: Help patients attain wellness and create a life full of joy, vitality and balance.
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Table of Contents
- What Is a Seizure?
- Can CBD Help Seizures?
- Potential Risks of Using CBD for Seizures
- Should You Use CBD for Seizures?
- Talk to Your Doctor
One in 26 people in the United States are diagnosed with epilepsy at some point in their lives. Although anyone could potentially experience a seizure, individuals diagnosed with epilepsy are considered to be at a higher risk of developing recurring seizure episodes. Despite the fact that millions of people live with epilepsy and seizure disorders, there is no cure for these conditions. However, many medications, including cannabidiol (CBD), can help manage epileptic symptoms in certain diagnoses.
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What Is a Seizure?
A seizure is a sporadic, short-term burst of electricity in the brain that alters a person’s awareness and ability to function and can lead to spastic movements and other related symptoms, such as staring, loss of consciousness and loss of bowel and bladder control, among others.
Common Causes of Seizures
Common causes of seizures include brain damage and genetic changes that lead to seizure activity, according to Anup Patel, M.D., a board certified specialist in epilepsy, clinical neuropsychology and neurology at Nationwide Children’s Hospital in Columbus, Ohio and president of the Child Neurology Foundation.
Marisa Gardner, M.D., associate professor of neurology and chief of the pediatric neurology and epilepsy division at Benioff Children’s Hospital in Oakland, California, says most seizures fall into one of three categories:
- A structural lesion or process in the brain causing seizures to originate from that area
- A known underlying genetic mutation causing epilepsy
- Idiopathic seizures in which the cause is unknown.
Can CBD Help Seizures?
CBD is a compound found in the cannabis sativa plant and does not include significant amounts (less than 0.3%) of delta-9 tetrahydrocannabinol (THC), which is the psychoactive constituent of cannabis known to cause intoxication.
CBD has been shown to act on the brain’s G protein-coupled receptor 55 (GPR55)—the part of the brain that decreases the release of calcium into cells, thereby decreasing excitatory currents and leading to seizure activity. Through clinical studies, it has been determined that CBD can help reduce neuron excitability.
Can CBD Help Prevent Seizures?
“CBD is an effective treatment for seizures and epilepsy,” says Dr. Gardner. “It has been shown in studies to be similarly effective to other anti-epileptic medications that we commonly use,” she says. “However, it may not work for every type of seizure or all epilepsy patients. For some patients it leads to full seizure control, other patients have a reduction in seizure frequency and others have no improvement at all.”
For patients with epilepsy, CBD is shown to control their seizures and prevent breakthrough seizures from happening. However, CBD does not treat or cure the underlying cause of the epilepsy, and responses vary from person to person, Dr. Gardner adds.
“Data showed that there was approximately 40% reduction in the median seizure count compared to baseline, and over 50% of patients saw at least a 50% reduction in seizures,” says Dr. Patel.
FDA-Approved CBD for Seizures
Studies in the past five years have evaluated a mostly purified plant-based version of CBD in the treatment of different types of epilepsy such as Lennox Gastaut syndrome (LGS) and Dravet syndrome, says Dr. Patel. These studies lead to the development of Epidiolex, the first FDA-approved prescription CBD used to treat seizures associated with these syndromes in patients two years and older.
Epidiolex is closely regulated and monitored to ensure that the product is pure CBD, according to Dr. Gardner. It’s proven to be an efficacious treatment for epilepsy, especially in patients with treatment-resistant epilepsy, (such as Dravet Syndrome or LGS). This is the safest form of CBD to take on a daily basis for seizure control, since it doesn’t contain THC. Epidiolex also allows medical professionals to treat patients at higher doses, as high-dose CBD is proven to be safe, whereas the effects of higher amounts of THC taken on a daily basis (especially in a developing brain) require more research.
“It is important that a patient with epilepsy be treated with a product that is high in CBD and as low as possible in THC (in other words a high CBD to THC ratio),” says Dr. Gardner.
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Potential Risks of Using CBD for Seizures
All cannabis products, including CBD, are broken down in the liver. This can increase liver enzymes to the point where damage can occur, says Dr. Patel, adding that liver enzyme testing is recommended when using CBD products to treat seizure disorders. Drug interactions can also occur: For example, Epidiolex can interact with Clobazam, a prescription medicine used to treat patients diagnosed with Lennox-Gastaut syndrome who are experiencing seizures.
Side effects specifically related to Epidiolex are relatively minimal, says Dr. Gardner. However, because it’s an oil, some patients may experience diarrhea. CBD use can also cause decreased appetite and fatigue.
Should You Use CBD for Seizures?
Patients considering incorporating CBD in their epilepsy treatment should discuss the risks and benefits with their health care provider to determine if CBD is safe for their condition. Dr. Patel notes only FDA approved products should be used—and should be accompanied by proper monitoring from your neurologist.
Talk to Your Doctor
Patients living with seizures should discuss the risks and benefits of this medication with their epilepsy provider, to determine if it is safe and effective for their type of epilepsy. Only FDA approved products should be used and proper monitoring with a neurology provider is highly recommended. Do not start CBD products on your own.
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CBD Products May Help People with Epilepsy Better Tolerate Anti-Seizure Medications
Johns Hopkins Medicine researchers have shown that CBD may reduce the adverse effects associated with anti-seizure medications, and seems to improve other aspects of health and quality of life for patients with epilepsy. Credit: Public domain image
Artisanal (non-pharmaceutical) cannabidiol (CBD) products have become popular in recent years for their apparent therapeutic effects. CBD — a naturally occurring compound of the cannabis plant legally derived from hemp — is used widely as a naturopathic remedy for a number of health conditions, including epilepsy and seizure disorders. Now, Johns Hopkins Medicine researchers, in collaboration with the Realm of Caring Foundation and other institutions, have conducted an observational study with participant-reported data to better understand the impact these products may have on people with epilepsy.
They found that CBD may reduce the adverse effects associated with anti-seizure medications, and seems to improve other aspects of health and quality of life for patients.
“The potential of CBD products for the treatment of seizure disorders goes beyond seizure control alone,” says Ryan Vandrey, Ph.D., professor of psychiatry and behavioral sciences at the Johns Hopkins University School of Medicine. “In our study, we saw clinically significant improvements in anxiety, depression and sleep when patients with epilepsy initiated therapeutic use of artisanal CBD products.”
Epilepsy, one of the most common nervous system disorders affecting people of all ages, is a neurological condition characterized by recurrent seizures. Treatment for epilepsy includes anti-seizure medications and diet therapy, such as forms of the ketogenic diet. Surgery may be an alternative treatment, especially when medications or diet fail to control seizures, or if drug side effects — including dizziness, nausea, headache, fatigue, vertigo and blurred vision — are too difficult for a patient to tolerate.
Epidiolex, a pharmaceutical formulation of CBD is approved by the FDA to treat three types of rare seizure disorders (Dravet syndrome, Lennox-Gastaut syndrome and tuberous sclerosis complex), but is not approved for the many other types of epilepsy. As a result, patients with other forms of epilepsy often seek alternative forms of CBD, including those evaluated in the new study.
For their evaluation, the researchers analyzed data gathered between April 2016 and July 2020 from 418 participants — 230 women and 188 men — with 205 (49%) at least age 18 and 213 (51%) age 18 or younger. The participants included 71 adults with epilepsy who used artisanal CBD products for medicinal purposes and 209 who were caregivers of children or dependent adults to whom artisanal CBD products were given. The control group consisted of 29 adults with epilepsy who were considering the use of CBD products and 109 caregivers who were considering it for a dependent child or adult patient.
Participants completed a web-based survey that included questions regarding quality of life, anxiety and depression, and sleep. They were prompted via email to complete follow-up surveys at three-month intervals for 14 months.
Compared with the control group, artisanal CBD users reported lower epilepsy medication-related adverse effects (13% lower) and had greater psychological health satisfaction (21% greater) at the beginning of the study. They also reported lower anxiety (19% lower) and depression (17% lower).
Both adult and youth (18 years or younger) CBD users reported better quality sleep, compared with their peers in the control groups.
Caregivers of patients currently using CBD products reported significantly less burden and stress, compared with caregivers in the control group (13% less).
Importantly, 27 patients in the control group at the start of the study started using artisanal CBD products later in the study. After starting CBD, these patients reported significant improvements in physical and psychological health, as well as reductions in anxiety and depression.
Participants also were asked about possible adverse effects related to their CBD use. Among the 280 users, the majority (79%) did not report any adverse effects. The remaining reported negative factors such as drowsiness (11%), high or prohibitive product cost (4%), worsening of epilepsy symptoms (4%), concerns about legal issues (3%) and worries about problematic drug interactions (1%).
Vandrey says further research is needed to understand how these findings can best be applied to helping people with epilepsy. In the interim, he says, patients should consult with their physician before trying CBD products.
“Our hope is to do controlled clinical trials to better inform clinical decision making and identify specific formulations that are most beneficial to patients,” he says.