Adults and children with two rare forms of epilepsy – Lennox-Gastaut Syndrome (LGS) and Dravel Syndrome – received access to the FDA approved medication Epidiolex since June 2018. The component of the medication is derived from the marijuana plant and this is the first cannabidiol treatment to be approved.
What is Epilepsy?
Epilepsy refers to a chronic disorder that causes seizures in the sufferer. The seizures are unprovoked and are not caused by other medical conditions such as extremely low blood sugar of alcohol withdrawal. The causes for most types of seizures are unknown, but some are related to brain injuries.
Some people with epilepsy may have more than one type of seizure and some may also have other neurological problems.
The events that produce the seizures occur in the brain, but the seizure may affect other parts of the body. Epilepsy sufferers often face safety issues and are also often perceived negatively by others.
How anti-seizure drugs work?
Anti-seizure drugs slow down excitatory nerve activity in the brain caused by the erratic electrical activity. Some types of epilepsy, including LGS and Dravet syndrome, require different medications than those used for other types of epilepsy and they often need to take multiple medications.
What is CBD?
Made up of hundreds of different compounds, the cannabis plant’s most well known are two cannabinoids: cannabidiol (CBD) and tetrahydrocannabinol (THC).
THC is responsible for the known “high” because it is a psychoactive compound. CBD is not psychoactive and it is known to have many medical benefits. As a matter of fact, people have been using it for centuries to treat pain and inflammation. In recent years it has also been proven to help alleviate the symptoms of stress and anxiety.
Medical cannabis has been defined as a cannabis-based product that contains cannabis or a cannabinol derivative and is produced for medicinal use.
How does CBD work?
CBD is known to have a range of biochemical effects on the nerve cells in the brain. Some of these effects may have an impact on seizures, but it is not yet clear why and research is still in the early stages and ongoing.
Even though not currently approved for treating other types of epilepsy, studies have shown that when CBD is taken with other anti-seizure medications, it reduces the frequency and severity of seizures.
A 2019 review of studies on Epidiolex showed a reduction in sustained seizure frequency of between 30 and 63%. Other encouraging findings are that seizures were almost half as severe and the postictal state (after seizure) was less severe too.
LGS and Dravet syndrome are both developmental disorders and usually begin in early childhood. LGS is characterized by multiple types of seizures combined with physical and cognitive issues. The seizures are difficult to control and the person needs a combination of many medicines, despite which they may still continue to have seizures. Similarly, Dravet syndrome is associated with multiple seizure types, sometimes also triggered by fevers and those affected may also have behavioral challenges and learning difficulties. Dravet syndrome is also treated with a combination of medications and people with it may continue to experience persistent seizures.
People with other types of seizures are currently awaiting the approval of CBD for other types of epilepsy. Studies are focused on refractory seizures that are not easily controlled by other medications. So far, one study of three patients with brain tumors has shown that even though other epilepsy drugs were not having any effect on their seizures, CBD decreased their severity in all three patients. Two patients also saw a decrease in the frequency of their seizures.
Dosing of anti-seizure medication
Anti-seizure medications require a strict regimen and have to be taken at the regularly at a scheduled time. Doses should not be skipped or combined.
Epidiolex is in liquid form and the recommended dose is worked out according to the weight of the individual. The effective dose has been established at 10mg/kg per day, divided into two doses.
Individuals with LGS or Dravet Syndrome often have difficulties with taking oral medication. This may be because of their behavioral problems, cognitive issues or difficulties with swallowing and their parents or carers have to find the best way to administer the treatment.
Side effects of CBD
Studies on the side effects of CBD have shown that they are more common in the first two weeks on the drug and diminish after that. They included drowsiness, fever, weakness, rashes, diarrhea, lethargy, etc. Since most of those involved in the studies were also using other medications, the side effects may not have been entirely from the Epidiolex.
If any sign of jaundice, abdominal pain, vomiting or discolored urine is noticed on someone taking Epidiolex, then you need to contact your doctor right away. The same applies if there are any severe mood changes, including anxiety and thoughts of suicide.
Even though CBD use can interact with other medications used for epilepsy. The review of CBD studies cited above showed that it actually decreased the overall side effects in participants.
CBD does not produce the characteristic “high” associated with marijuana, so parents don’t need to worry that their child is abusing the drug or may become addicted to it. Unfortunately, there may still be a stigma associated with it from people who have not kept up with the recent developments in the area.
Other CBD products and seizures
The passing of the Farm Bill at the end of 2018 legalized CBD and other hemp-derived products at the federal level. Nevertheless, since these products are not regulated by the FDA yet, people should be wary about their labeling and promises made on the labels. The Journal of the American Medical Association published a study in 2017 that showed that there is an inconsistency in many products that were purchased online. They contained less CBD than claimed and often had other compounds from the cannabis plant, including THC.
Something to reflect on
CBD has been proven effective for a number of medical conditions and it can have some side effects so it should be used with caution. Its proven efficiency in treating LGS and Dravet syndrome and the ongoing research is filling other epilepsy sufferers with the anticipation that other approved medications will soon follow.