In Australia, around 250,000 people are currently diagnosed with epilepsy, a disorder characterised by recurring seizures. An epileptic seizure is a temporary malfunction of the brain caused by uncontrolled electrical activity from the nerve cells in the cerebral cortex. The seizures rarely damage the brain, but they can make life difficult.
The underlying cause or causes of epilepsy is unknown. It is not caused by, nor is it related to, mental illness, developmental delays, or mental health issues. In fact many famous people have, or have had epilepsy and have contributed much to our society. Seizures may occur for no apparent reason or may be triggered by a wide range of things, including exposure to an allergen; drug or alcohol withdrawal; fever; flashing lights; hunger; hypoglycaemia; infection; lack of sleep; metabolic or nutritional imbalances; or trauma, especially a head injury.
There is evidence for a genetic or hereditary link however, research into the genetic component is in its infancy. There are more than five hundred genes that could play roles in epilepsy, as well as more than thirty different kinds of seizures, divided into two basic groups, partial (focal) seizures, and generalised seizures:
Partial Seizures: These may be classified as either simple or complex. Focal seizures occur in just one part of the brain and affect about 60% of the people who have epilepsy.
Generalised Seizures: These seizures are the result of abnormal neuronal activity on both sides of the brain. With this type of seizure, loss of consciousness, falling down and/or muscle spasms are common.
There is no treatment for the underlying causes of seizures, and no treatments to reliably prevent the development of seizures after head traumas. There are only medications to limit the seizure intensity or frequency, and these medications are not always effective. More than 20 new seizure medications have been developed over the past few decades, but the percentage of patients with uncontrolled seizures has not changed as much as hoped for, or expected. In fact a third of epileptic patients fail to become seizure-free even after trying and tolerating multiple appropriately prescribed anti-epileptic drugs (AED).
The need for better, safer, and more effective treatment is clear…
Medical cannabis is known as a relatively safe medication with no incidence of fatalities due to the lack of cannabinoid receptors in the brainstem. The most common side effects reported among patients using medical cannabis for seizure control are fatigue, decreased appetite, and drowsiness, all of which resolve when medical cannabis is discontinued. AEDs can have significant side effects, and contrary to medical cannabis some of these can be fatal.
It is important to note that there are some drug-drug interactions when using medical cannabis with AEDs because cannabinoids are primarily metabolized by the Cytochrome P-450 system in the liver. Competition for these enzymes can affect the serum levels of AEDs, so patients using medical cannabis in addition to prescribed AEDs should be monitored, and dosage adjustments may be needed.
Suffering from a rare form of epilepsy, she had her first seizure just 30 minutes after birth. The seizures increased in intensity and frequency from there onwards. By the age of two, she was showing signs of severe cognitive decline, similar to the symptoms of Autism. Within a year she had stopped talking, couldn’t eat, and was confined to a wheelchair. She was on seven different types of aggressive medication, which was taking a gruelling toll on her body. By the time she turned five, she was seizing up to 300 times per week, with individual seizures lasting up to four hours. Her parents had tried everything but it was no use; doctors put her in a medically-induced coma to try and help Charlotte survive. They were not optimistic. A do-not-resuscitate order was signed.
Charlotte became the face of the medical cannabis movement when she was 5 years old, after taking medical cannabis to ease the symptoms of her epilepsy. The results were instantaneous; that first week Charlotte went from 300+ seizures to zero seizures. Her parents realised they had discovered something life-changing.
They got in touch with local medical marijuana growers called The Stanley Brothers, who had successfully developed a hybrid strain by crossbreeding industrial hemp with low THC marijuana. Containing all the medical benefits but practically none of the psychoactive effects, the strain had a ratio of 30:1 of CBD to THC. They called it Charlotte’s Web after the little Colorado girl whose life they had saved; Charlotte’s seizures reduced to just two or three per month. It was Charlotte’s granddad who first heard of cannabis as a treatment for sick children. With all options for clinical treatments exhausted, Charlotte’s parents Matt and Paige had nothing to lose. They got their hands on some cannabis oil. Charlotte’s story was the breakthrough for people all over the world who the medical system had failed.
Finally, there was a safe and natural option for treating themselves and their little ones. An underground movement arose, picking up thousands of followers who’d been left out in the cold by Western medicine. The United States government took note; in late 2013 they patented CBD for use as a neuro-protectant. Other countries began to pay attention.
Today, medical cannabis is legal in a number of countries throughout the world. There are still many barriers preventing access, and medical cannabis is still extremely difficult to get a prescription for, even in countries that have legalised medical marijuana. The writing is on the wall: Medical cannabis is here to stay, and CBD based medical cannabis has a strong safety profile.
Although it did not completely resolve David’s seizure disorder, the medical cannabis was able to make a significant difference in David’s quality of life.
He had tried almost two dozen treatments including intravenous immunoglobulin and a ketogenic diet. Few of these were effective, and those that were either had worrisome side effects (hand tremors, hives, zombie consciousness), or they ceased working after a short while.
By the time he was 11, he was on massive doses of corticosteroids – but the side effects were devastating. He had been hospitalised twice and seen six neurologists.
As a last resort, his parents decided to try medical cannabis. The effects were profound, dropping his seizure rate from 68 on a Thursday, to 6 on the following Monday. A few years after starting medical cannabis, Sam was down to between 0 and 5 seizures a day. Sam is now 15 years old and has had 15 months without a seizure. He is taking one prescribed medication a day, and medical cannabis twice a day. Now active in sports, fishing and rock climbing, Sam gets to be a normal boy.
Clearly there is promise in the use of medical cannabis to manage epilepsy and still much to learn.