New Hope for Seizure Control
About one third of people with epilepsy continue to have seizures despite taking anti-seizure medications. Some people may have very few seizures whilst others may have many severe and damaging seizures on a daily basis.
No matter how many seizures a person is having, epilepsy can significantly affect quality of life. However, the treatment gap has led people to seek other forms of therapy, including medicinal cannabis.
Research is finding that compounds derived from the cannabis plant can reduce the severity and frequency of seizures in some people, especially in children who have severe epilepsy disorders.
What is Medicinal Cannabis?
For centuries, the cannabis plant has been considered to have therapeutic properties including anticonvulsant effects. Cannabinoids are substances in cannabis that act on cells in the body (called cannabinoid receptors) to cause some effect. Two major ingredients include:
- Tetrahydrocannabinol, or THC, which causes the psychoactive effects of a ‘high’. Currently licensed products used for epilepsy management do not contain THC (it may be present in minute quantities)
- Cannabidiol, or CBD is found in cannabis stalks and flowers and does not contain mind-altering properties. It has shown some positive effects on certain body systems and may potentially help control seizures.
Unlike recreational cannabis, CBD does not contain the properties that cause the effect of getting ‘high’ or ‘stoned’. In fact, CBD is thought to have an anti-psychoactive effect that controls or moderates the ‘high’ caused by THC, and may even reduce some of the other negative effects that people can experience from THC, such as anxiety.
Watch this video from the Therapeutic Goods Administration (TGA)
For more comprehensive information go to Cannabis 4 Epilepsy
Does it work?
CBD may or may not work for you. It is like trying a new medication for your seizures. Sometimes they work, sometimes they don’t. They all have side-effects. We hear different reports and the results vary from person to person. Despite what is in the media, bear these things in mind if you are thinking about trying CBD:
- it is very expensive because the doses needed for people with epilepsy are high;
- you should not stop your anti-seizure medication, it is regarded as complementary treatment to be used alongside your medication;
- if you have side effects or little effectiveness or decide CBD isn’t for you, then you need to wean off the CBD like any other anti-seizure medication, so you will still be outlaying a lot of money whilst weaning;
- it has side effects just like any other medication;
- it can also affect or interact with medications you may be taking therefore medical supervision is necessary;
- it will impact your driving license, and traces of THC may be found on a road side drug test;
- it may or may not improve your seizure control. You may have a honeymoon period initially, like any other anti-seizure medication, but there is no guarantee it will work long-term for you.
If you are thinking of trying medical cannabis it is very important that you speak to your neurologist or treating doctor.
What Research Tells Us
Randomised controlled trials are underway for children and adults using different formulations of cannabidiol (CBD).
There is evidence that cannabis can be helpful in controlling seizures in some cases, especially for difficult to control syndromes like Dravet Syndrome in children and Lennox-Gastaut Syndrome (LGS).
In 2017, an international trial testing cannabidiol in children with Dravet Syndrome – a complex disorder where children suffer medication-resistant seizures and a high death rate, was conducted.
In the Trial of Cannabidiol for Drug-Resistant Seizures in the Dravet Syndrome , 120 children or young adults remained on epilepsy medications as well as taking either a cannabidiol liquid/oil (Epidiolex®) or a placebo.
Study details and findings:
- The frequency of seizures was measured over 14 weeks.
- Of those given medicinal cannabis, more than 40% had their seizures halved.
- 5% became seizure free.
- 93% of the treatment group suffered side effects, compared with 74% in the placebo arm. The most common of these were vomiting, fatigue and fever. These side effects were generally not considered serious, although eight patients in the cannabidiol group did drop out of the trial.
In another study Cannabidiol in patients with treatment-resistant epilepsy: an open-label interventional trial , 214 people received oral cannabidiol over a 12-week treatment period.
Study details and findings:
- Patients involved in the study (aged 1–30 years) had severe childhood-onset, treatment-resistant epilepsy and were receiving stable doses of antiepileptic drugs before study entry.
- Results showed a median 36.5% reduction in monthly motor seizures, with the median monthly frequency of motor seizures falling from 30 motor seizures a month at the study’s start to 15.8 over the 12 weeks.
- Unwanted side effects were reported among patients, including drowsiness, decreased appetite, diarrhoea, fatigue and convulsion.
- Most side effects were mild to moderate and short-lived, but 20 patients had serious adverse events related to CBD use –most commonly status epilepticus (seizures that last too long or are too close together).
In 2018, this trial was done to appreciate the potential effects of CBD in controlling drop seizures in people with Lennox-Gastaut syndrome (a childhood onset seizure disorder associated with encephalopathy which usually is medication resistant).
Study details and findings:
There was 43.9% reduction of drop seizures in CBD group and 21.8% of the reduction in the people who were in the placebo group. Besides drop seizures, the frequency of other types of seizures was also reduced drastically which reflected a wide spectrum of effects of CBD in controlling different types of seizures.
The most common unwanted side effects (in >10% of cases), though mild to moderate in severity, including sleepiness, diarrhoea, and decreased appetite were seen in 86% of patients who were in CBD group and 69% of patients who were in the placebo group.
Medicinal Cannabis Products in Australia
In early 2017, the Federal Government changed laws to allow easier importation of medicinal cannabis from suppliers overseas.
Access to medicinal cannabis involves a more complicated process than with most other medicines. Most medicinal cannabis products are unapproved therapeutic goods, which means they have not been assessed by the TGA for safety, quality or effectiveness. However, where clinically appropriate, there are pathways for doctors to access medicinal cannabis products for their patients.
This means that you can’t simply go to a doctor, obtain a prescription, and fill it at a pharmacy as you would with conventional registered medicines. A doctor must either be an ‘Authorised Prescriber’ or be prepared to make an application on behalf of their patient through the TGA ‘Special Access Scheme’. It varies in each state, but doctors usually need to be able to show that the product would be of benefit for their patient.
Read here about accessing medicinal cannabis
In most states any doctor can prescribe medicinal cannabis for any patient with any condition, if they have the required approvals. In addition to a doctor prescribing the treatment, the legal use of cannabis for medical purposes differs by States and Territories. See below for the regulations in your state.
- Federal Government
The Federal Government relaxed medicinal cannabis restrictions in March 2018 and has passed legislation legalising the cultivation of cannabis for medicinal purposes.
- ACT – See ACT Health for details
- New South Wales – See Centre for Medicinal Cannabis Research and Innovation for details. See also NSW Health
- Northern Territory – See NT Government for details
- Queensland – See Queensland Health for details.
- South Australia See SA Health for details or Patient Access in SA.
- Tasmania See Tasmanian Department of Health for details.
- Victoria – See Health.Vic for details
- Western Australia – See WA Department of Health for details
- See here for TGA’s information about Access to Medicinal Cannabis Products
Epilepsy Action Australia’s Position
A survey conducted by Epilepsy Action Australia revealed that 14% of the 983 people surveyed were currently using cannabis-based products for medicinal purposes. Of these 86% reported that cannabis used for medicinal purposes was helpful in managing their seizures.
Epilepsy Action believes in a thorough pharmacologic and clinical investigation into cannabis to confirm or disprove its safety and anti-seizure potential. We are at the forefront of advocating for increased research into this area of new hope, and assisting through various Government and University constituted Boards and Steering Committees.
- Cannabis 4 Epilepsy is a website dedicated to providing people with the most current information available about cannabis for epilepsy.
- MyEpilepsyKey – detailed information about the endocannabinoid system, cannabinoids, cannabis based medicines, the therapeutic use of cannabis in epilepsy, educational videos, books and links to Australian and International patient and advocacy groups
- Find, explore and learn all things cannabis
- Guidance for the use of medicinal cannabis in the treatment of epilepsy in paediatric and young adult patients in Australia (TGA)
- Medical Cannabis Industry Australia (MCIA)
- United in Compassion – Australia
- Cannabis Awareness Tasmania – Facebook group – raising awareness of the issues faced by Tasmanians using medicinal cannabis; lists local events and meetings
- The Medical Cannabis Users Association of Australia – Facebook group – is a collective voice to lobby government with a focus on gaining medical access to cannabis in all its forms for health conditions
- Understanding Cannabinoids video
- Documentary covering the life work of Professor Raphael Mechoulam, considered to be the founding father in the field of cannabinoid research