Located in the heart of Houston, Texas Medical Center campus is home to leaders in research, medicine, and innovation in healthcare. There is evidence that Epidiolex – an FDA-approved CBD oil – could reduce epilepsy symptoms for people with certain syndromes. Find out more. 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
Treating Epilepsy with CBD Oil
Galveston resident Trysten Pearson, who has epilepsy, experienced his first seizure in 2013 when he was 12 years old. But last summer, his mother Shena Pearson explained, his condition began to deteriorate quickly.
Despite taking a slew of medications, and despite having a device implanted under the skin of his chest that sends electrical impulses to his brain to reduce the number and severity of his seizures, Trysten’s symptoms persisted.
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He often felt nauseous and he’d vomit every few days. Because exercise triggered his seizures, his school stopped allowing him to participate in physical education, leading to weight gain. His grades were dropping and his memory was fading, too.
“Because of these horrific seizures, when I show him photos from when he was younger, his memory is completely lost,” Shena explained. “Sometimes, he looks at a photo from his past, and he just bawls. He says, ‘It’s unfair to me that my history is gone.’”
But this spring, Trysten’s luck finally turned, thanks to a treatment that has become available to him and thousands of other epilepsy patients across the state.
“My life has changed so much,” said Trysten, who turns 17 in July.
Teachers told Shena that Trysten was less distracted at school and that his performance had improved. In his first 30 days on his new treatment, he had just one seizure. He hasn’t felt this well for the past three years.
And it’s all thanks, the Pearsons say, to cannabis.
“I really wanted this medicine to work because of how many times pills have failed me,” said Trysten, who takes drops of the oil orally. “Once I started taking it, I felt so much better. I don’t have seizures.”
For the Pearsons, cannabis was a last resort to relieve Trysten’s epilepsy after years of other treatments failed to provide relief.
They were astounded by how quickly, and how well, the treatment worked.
Across Texas, doctors and patients are now finally able to take advantage of a three-year-old law that makes cannabidiol oil, or CBD oil, available to some epilepsy patients. CBD oil is derived from the cannabis plant, also known as marijuana. CBD oil provides symptom relief without intoxicating effects.
A different substance in the plant, tetrahydrocannabinol, or THC, is responsible for the high associated with cannabis.
In June 2015, Gov. Greg Abbott signed into law the Texas Compassionate Use Act after it passed both chambers of the state legislature by wide, bipartisan margins. But it wasn’t until late 2017 that the state issued full licenses to the only three businesses in Texas that can now legally provide CBD oil to prescribed patients.
Meanwhile, doctors have been slow to sign up for the program as they navigate the new law. As of late June, just 42 physicians across Texas were registered with the state to become CBD oil prescribers, including 12 in Harris County, though not all are prescribing CBD oil at this point. According to the Epilepsy Foundation of Texas, approximately 149,000 Texans have been diagnosed with the form of epilepsy that would make them eligible for the program.
For many who have used CBD oil, the newly available treatment has provided relief when all else failed. About two thirds of epilepsy patients will respond to the first or second medicine they’re given for epilepsy. But once an epilepsy patient has taken two different medicines without relief, the odds that a third medication will work are less than 1 percent, doctors say. That leaves other options, such as special diets, surgeries, device implementation—or CBD oil.
“This can be really beneficial to patients,” said Michael Watkins, M.D., assistant professor of pediatric neurology with McGovern Medical School at The University of Texas Health Science Center at Houston (UTHealth). Watkins works at the Pediatric Epilepsy Clinic at UTHealth, where about 20 patients have been prescribed CBD oil. He said the stigma associated with taking medicine derived from cannabis is fading.
“Most people are looking for anything beneficial to prevent their kids from having seizures,” Watkins said.
Doctors, patients and advocates are quick to point out CBD oil isn’t a miracle cure. It doesn’t eradicate epilepsy and it doesn’t help everyone. But for some patients, it can help eliminate or reduce their symptoms, and it may allow them to ease off of other drugs that have serious side effects, including anemia, low platelet levels, liver failure, pancreatitis, allergic reactions and suicidal tendencies.
Before the Texas law took effect, many patients were trying CBD oil on their own by visiting other states or ordering it online, which is a legal gray area. The problem with that, doctors say, is it’s difficult to determine the precise potency of the drug the patient is receiving.
“It’s kind of risky, but these parents and families are desperate for their kids,” said Gretchen Von Allmen, M.D., chief of pediatric epilepsy with McGovern Medical School at UTHealth and a pediatric neurologist at Memorial Hermann-TMC.
Under the state’s compassionate use law, patients’ medicine must contain at least 10 percent CBD oil and no more than 0.5 percent THC. For context, recreational marijuana might measure 20 percent THC. Those restrictions ensure Texas CBD oil makers maximize the compounds that provide symptom relief while minimizing those that can cause side effects or a high (Trysten Pearson, for his part, said he experiences no side effects from CBD oil).
Still, Texas’s CBD law is considered “pretty restrictive” compared to those involving cannabis in other states, said Katharine Neill Harris, Ph.D., a drug policy fellow at Rice University’s Baker Institute for Public Policy.
Texas patients must get two doctors to approve their use of CBD oil. And they are only eligible for a prescription if they have what’s called “intractable” epilepsy—meaning at least two other medications have failed to help them. Harris said she wouldn’t even call Texas’ policy a “medical marijuana” law.
Perhaps the biggest hurdle of all is price. The Pearsons pay $350 per month for Trysten’s CBD oil—a typical amount—and the cost isn’t covered by insurance. That’s unlikely to change, experts say, as long as the federal government views cannabis as a Schedule I drug with no accepted medical use. In May, a federal appeals court sided with the Drug Enforcement Administration, ruling that CBD oil is a Schedule I controlled substance. But in June, the U.S. Food and Drug Administration approved Epidiolex, a CBD oral solution to treat seizures associated with rare and severe forms of epilepsy.
Morris Denton, CEO of Compassionate Cultivation, which provides the CBD oil used by the Pearson family, has launched a discount program with the Epilepsy Foundation Texas to help subsidize CBD oil costs for low-income Texans. So far, the program has served 12 of its approximate 300 customers.
Meanwhile, the Texas law doesn’t permit people with any diagnosis besides intractable epilepsy to use CBD oil, even though some other states allow those with multiple sclerosis, late-stage cancer, Crohn’s disease and other conditions to access CBD oil or medical marijuana. That has frustrated some patients and advocates, but skeptics say more research must be done to evaluate whether and how CBD oil can treat those illnesses.
“Now that the people of Texas are seeing the real impact of this medicine, not just the potential impact, we need to figure out how to get it into other people’s hands that are as deserving as people with intractable epilepsy,” Denton said. “That’s up to the legislature to figure out how to make that happen.”
Should you take CBD oil for seizures?
There is evidence that Epidiolex – an FDA-approved CBD oil – could reduce epilepsy symptoms for people with certain syndromes. Find out more.
People have been using cannabis (also known as marijuana) to treat epilepsy for centuries. In the United States it only became legal to take marijuana products for medical reasons relatively recently. And, in 2018, a CBD oil for seizures called Epidiolex was approved by the FDA to treat certain epilepsy syndromes (CBD is a chemical found in cannabis plants).
Around one third of people with epilepsy have drug-resistant epilepsy, which means traditional medication does not control their seizures. For people with drug-resistant epilepsy (also known as refractory epilepsy), the possibility that medical marijuana could help them reduce or even end seizures is, of course, exciting.
Here is everything we know about Epidiolex, CBD oil and seizures.
What is CBD?
Cannabidiol – known as CBD – is a chemical found in cannabis plants and it is believed to help treat a number of conditions. CBD can be extracted from marijuana plants and it is usually turned into an oil that you swallow. The FDA has approved one brand of CBD oil – Epidiolex – for the treatment of people with Lennox Gastaut Syndrome, Dravet Syndrome, and tuberous sclerosis complex.
How does CBD oil stop seizures?
Researchers are still not exactly sure how CBD affects seizures, but it may help protect brain cells from becoming ‘over excited’ in a few different ways.
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Epidiolex – a CBD oil for seizures
In 2018, the Food and Drug Administration (FDA) approved the use of a new drug called Epidiolex for the treatment of three forms of epilepsy:
The medication was approved after several trials showed a significant reduction in seizures for people with these conditions (in combination with their existing anti-epilepsy drugs).
If you or someone you know has Dravet Syndrome, tuberous sclerosis complex or Lennox-Gastaut Syndrome and you would like to use this CBD oil for seizures, talk to your epilepsy specialist about Epidiolex.
Buying CBD oil for seizures at health food stores
It is possible to purchase CBD oil from health food stores in most, but not all, US states (the rules vary, so you should always check with your healthcare provider). Many companies promote the use of CBD oil for a range of conditions – from anxiety to insomnia to chronic pain. However, the Epidiolex brand is the only CBD oil that is FDA-approved to treat seizures.
If you wish to purchase CBD oil for seizures, you should always speak with your doctor first.
Side effects and interactions between CBD oil and seizure medicine
While Epidiolex (and other CBD oils) may provide some relief from seizures, it should always be taken with caution and under guidance from a medical professional. This is because of:
- Side effects: CBD oil can cause sleepiness, diarrhea, fatigue, decreased appetite and, potentially, liver damage
- Interactions: CBD oil may interact with other anti-epilepsy drugs. People taking valproic acid may see an increase in liver enzymes which could cause liver damage, while people taking Clobazam may feel especially tired
Cautious optimism about CBD oil for seizures
It is always positive to learn about a new treatment for epilepsy, and the potential benefits of CBD oil Epidiolex for seizures are exciting. However, we are still learning about how CBD affects people with epilepsy, so until we know more it should not be seen as a replacement for standard treatments.
If you would like to find out more about Epidiolex, CBD oil and seizures, speak to your doctor about how it might work for you and whether it is safe for you to try it.
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.