Epidiolex comes in an oral solution (liquid form), and the recommended dose is initiated based on weight.
The side effects of CBD that have been reported in the studies when it was added to other antiseizure medications included:
There's still much to be learned about how CBD interacts with other anti-seizure drugs.
Meredith Bull, ND, is a licensed naturopathic doctor with a private practice in Los Angeles. She helped co-author the first integrative geriatrics textbook, "Integrative Geriatric Medicine."
Studies using CBD for seizure control are focused on refractory seizures, which are seizures that are not easily controlled with anti-seizure treatments. It's still too soon to tell whether it will be beneficial and tolerable for people with other seizure types. As such, CBD is not approved for other types of seizures or epilepsy itself at this time.
A 2017 study published in JAMA found that 26 percent of products purchased online contained less CBD than their labels claimed.
In the aforementioned 2019 review of studies on this drug, however, researchers found that while adding Epidiolex to a treatment regimen may increase certain specific side effects, it may actually decrease the overall amount of side effects participants experienced.
“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.”
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.
“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.
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.
There is also no good scientific evidence to support suggestions that the addition of THC in combination with CBD increases the efficacy of cannabis-based medicinal products for children.
“Clinicians should not feel under pressure to prescribe cannabis-based medicinal products until they have undergone proper clinical trials,” says the BPNA.
Interim guidance from the ABN states that there is only published evidence for the use of medicial cannabis in Dravet syndrome and Lennox-Gastaut syndrome. Prescriptions should only be for cannabidiol.
What is the evidence around THC?
Three double blind randomised controlled trials of pure CBD in children and young people with these syndromes has shown a greater reduction in monthly seizures compared to placebos. There was also a greater reduction in drop seizures in people taking CBD compared to those on a placebo. Further open label studies have shown that it may also have an anti-epileptic effect in the epilepsies in general.
The British Paediatric Neurology Association (BPNA) has drawn up interim guidance around epilepsy on behalf of NHS England.
Cannabis is made up of hundreds of different components. The most well known are two cannabinoids: CBD – cannabidiol – and THC – tetrahydrocannabinol. These are found naturally in the resin of the cannabis plant.
What is the evidence?
The BPNA also recommends that where children are already taking other cannabis-based products that contain higher proportions of THC, they should be transitioned on to CBD until strong evidence for these products can be produced through clinical trials.
The body also has concerns about the ‘viability of the economic model’ used by GW Pharma, the company that developed the drug, to establish the cost to be charged to the NHS for it. It concluded that Epidyolex would not, at this stage, be an effective use of NHS resources.