It is always positive to learn about a new treatment for epilepsy, and the potential benefits of CBD oil for seizures in adults and children 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.
Cannabidiol – known as CBD – is a chemical found in cannabis plants and it is believed to help treat a number of conditions. It is different to THC, which is the chemical in marijuana that makes people feel ‘high’.
While CBD oil 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 and interactions between CBD oil and seizure medicine
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).
If you or someone you know has Dravet Syndrome or Lennox-Gastaut Syndrome and you would like to use CBD oil for seizures, talk to your epilepsy specialist about using the drug.
CBD oil may help to stop seizures by activating certain cells called CB1 receptors. These cells are found in the nervous systems and in parts of the brain that are related to memory. Researchers are still not exactly sure how CBD affects seizures, but it may help protect brain cells against damage or from becoming ‘over excited’.
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.
Summarized below are results from the May 2017 New England Journal of Medicine study examining the effectiveness of Epidiolex (CBD) in people with drug resistant seizures with Dravet syndrome.
An Israeli study using a product that had 20 parts of CBD to 1 part of THC was performed in an open-label format for children up to age 18 years with hard to control epilepsy. A significant number of people reported seizure reduction with 7% stating seizures worsened.
The safety data from the trials in people with Lennox-Gastaut syndrome and Dravet syndrome has shown similar side effects. Tiredness, diarrhea, and upset stomach are reported the most. Interestingly, people getting the placebo also reported diarrhea and upset stomach feeling as well. This may be due to both products being oil.
Additional Cannabidiol Studies
A number of clinical trials are active and recruiting people, including studies using Epidiolex in people with Tuberous Sclerosis Complex and Sturge-Weber Syndrome.
Researchers studied this medicine in controlled clinical trials. 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 tpyes of studies are called “gold standard” studies.
Epidiolex is a purified (> 98% oil-based) CBD extract from the cannabis plant. It is produced by Greenwich Biosciences (the U.S. based company of GW Pharmaceuticals) to give known and consistent amounts in each dose.
While the carry-on quantity of liquids is less than 3.4 ounces/100mL, TSA allows larger amounts of medically necessary liquids in reasonable quantities for your trip. However, you must declare them to security officers at the checkpoint for inspection. In checked baggage, liquid medications are allowed without packing requirements, quantity limitations, or notification requirements. Learn more on TSA’s website.
In August 2019, NICE – the National Institute of Health and Clinical Excellence – announced that it would not be recommending that cannabidiol, a medicinal cannabis in the form of Epidyolex, should be prescribed on the NHS for children with two severe forms of epilepsy. This is on account of the fact that its long-term effect remains unclear.
A prescription for medicinal cannabis would only be given when all other treatment options have been tried or are considered unsuitable, and would only be given if the doctor considers it to be in your best interests.
What is medicinal cannabis?
The reason that the BPNA is only recommending CBD is that there is some evidence to show that this newly developed drug can be effective in reducing some type of seizures in Dravet and Lennox Gastaut syndromes.
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.
The recommended guidelines are still only draft and the consultation closes on 16 September. So there is still time for you to have your say and let them know what you think. Professor Sander will be doing the same. All comments received will be considered by NICE and final guidance is likely to be published in November 2019.