CBD Oil For Epilepsy FAQs: Does CBD Oil Reduce Seizures in Intractable Epilepsy?
Thanks to high-profile cases such as Colorado’s Charlotte Figi, Northern Ireland’s Billy Caldwell, and Australia’s Katelyn Lambert, high-CBD cannabis oil has attracted a lot of attention for its potential to control the uncontrollable – i.e. intractable childhood epilepsy. But does it work for everyone? In Part 1 of our four-part epilepsy series, we’ve prepared some FAQs to answer the questions about CBD oil and epilepsy that parents frequently seek answers to.
Q. Does CBD oil help control epileptic seizures?
A. The short answer is, yes it can. Children all over the world are benefitting from the use of cannabidiol (CBD oil) to help control their seizures and improve their quality of life. In recognition of the mounting body of anecdotal evidence, big pharma are scrambling to spend millions of dollars to conduct trials and produce approved medicines for the marketplace.
“For the first time, there is now class 1 evidence that adjunctive use of CBD improves seizure control in patients with specific epilepsy syndromes.”
Q. What is epilepsy?
A. Affecting 3-4% of the population, epilepsy is a neurological condition that affects the brain and causes seizures.
Q. Do pharmaceutical drugs help treat epilepsy?
A. Around 35% of people with epilepsy do not respond to anti-epileptic drugs (AEDs). Epilepsy that does not respond to pharmaceutical drugs is called intractable epilepsy. You may also hear it called refractory epilepsy.
Q. How many Australian children have intractable epilepsy?
A. Epilepsy Action Australia tells us that 250,000 Australians have epilepsy and of those, 40% are children (i.e. 100,000). If around 35% of people with epilepsy have intractable epilepsy, that makes roughly 35,000 Australian children who have epilepsy that cannot be controlled with any of the available anti-epileptic drugs (AEDs).
Q. Are there different types of epilepsy?
A. Epilepsy is not one condition, but an umbrella term for a complex group of neurological conditions that result in seizures. There are over 30 different epilepsy syndromes, and these include:
- Dravet Syndrome
- Lennox-Gastaut Syndrome (LGS)
- Benign Rolandic Epilepsy
- West Syndrome
- Doose Syndrome (MAE)
- Juvenile Myoclonic Epilepsy (JME)
Q. Are seizures a symptom of epilepsy?
A. Recurring seizures are the key symptom of epilepsy, and they occur when the electrical activity that occurs in the neurons of the brain starts to fire abnormally or uncontrollably. A seizure may cause changes in a person’s behaviour, movement, consciousness, or sensations.
Q. Are there different types of seizures?
A. There are many different types of seizures. These include:
Generalised onset (starts in both hemispheres of the brain):
- tonic-clonic (muscle stiffening and jerking; aka grand mal)
- absence (staring; aka petit mal)
- atonic (limp muscles)
- myoclonic (jerking)
- tonic (muscle stiffening)
- clonic (jerking)
Focal onset (starts in one part of the brain, aka partial)
- Focal aware (aka simple partial)
- Focal impaired awareness (aka complex partial)
Q. What are the key epilepsy organisations in Australia?
Q. How does CBD oil work to control epileptic seizures?
A. The scientific and medical communities are still not entirely sure how CBD works to control seizures, but research like this is pointing to its anti-convulsant properties via its effect on ictal control (i.e. how CBD works to normalise the abnormal electrical impulses in the brain that cause the seizure).
“endocannabinoids play an important role in the control in synaptic transmission and the regulation of the rate of neuronal firing”
Q. Is CBD oil safe for children?
A. Whilst pretty much any substance or food we consume can result in a toxic response (e.g. penicillin, peanuts, prawns, sesame, raw potatoes), cannabis has been safely used as a treatment in seizure disorders for thousands of years. The World Health Organisation (WHO) published an extensive report in 2017, noting that CBD oil is safe, well tolerated, and non-addictive.
“I want to scream it from the rooftops. I want other people , other parents, to know that this is a viable option.
Q. Do anti-epileptic drugs have side effects?
A. Side effects in AEDs are very common. Researchers suggest that 40-50% of patients who take just one AED will experience side effects.
Patients with epilepsy that is difficult to control are more likely to be on multiple AEDs. The more drugs you take at one time, the more likely you are to have adverse side effects. Therefore, patients with intractable epilepsy have a much greater likelihood of experiencing adverse side effects from these drugs.
For more info on the side effects of AEDs, see Part 4 of our Epilepsy series, CBD Oil and the Side Effects of Anti-Epileptic Drugs (AEDs)
Q. Are Australian families using CBD to control intractable epilepsy?
A. Australian multi-millionaires, Joy and Barry Lambert—grandparents of Katelyn, who has uncontrollable Dravet Syndrome—used the same highest-quality CBD oil we source here at Eternal Plants, and Katelyn became seizure free. So convinced of the powers of this miraculous plant, the Lambert family donated $33.7 million dollars to create the University of Sydney’s Lambert Initiative for Cannabinoid Therapeutics. Subsequently, Katelyn’s dad, Michael Lambert, was found guilty of possession and cultivation in 2017 for growing cannabis (for Katelyn’s back-up supply of medicine).
“the results can be positively transformative.”
Q. How many kids with intractable epilepsy will benefit from using CBD oil?
A. Based on evidence coming out of clinical trials (albeit mostly using CBD isolate, rather than superior whole-plant extract), in the range of 30-50% of children in these trials are seeing up to a 50% reduction in seizures. A smaller handful have become seizure free. See our discussion on the results of these epilepsy trials here.
Q. Does CBD oil work for every child with intractable epilepsy?
A. Even though the results of clinical trials are concluding that CBD oil works for some, but not every, child with intractable epilepsy, parents should have hope. Ongoing trials are being conducted in Israel, with children who have already used CBD oil to no avail. These trials are proving that CBD strains that appear chemically very similar on paper to the ones they have already tried without effect, are achieving partial seizure control for around 35% of these children. A further 3.5% have achieved full seizure control just by trying different strains with a similar cannabinoid profile.
Q. Why do some CBD oil strains not work for epilepsy?
A. As they say in the classic Castrol GTX advertisement, “oils ain’t oils.” While they appear similar on paper in terms of their cannabinoid profiles (e.g. how much CBD they contain), current Israeli research is looking into the full chemical analysis of different strains and uncovering just how different each strain can be. Whole-plant extracts contain hundreds of different compounds, including cannabinoids, terpenes, and flavonoids. Every different strain will have a different chemical profile. Growing conditions, and even the method of extraction, can also significantly affect the profile of each strain. So if one brand or strain of CBD oil is not working for your child, it doesn’t mean that another one won’t.
Q. Are the Australian authorities looking into whole-plant extracts?
A. Unfortunately, frustrated and law-abiding Australian parents need hope and patience in spades, while Australian authorities insist on limiting desperate families to manufactured big-pharma isolates, instead of looking to the ground-breaking research being conducted in places like Israel. Israeli researchers are showing us— through their thorough analysis of different strains—that instead of one medicine, there are potentially hundreds of cannabis-medicine options that could be harnessed to treat the previously untreatable.
Q. Are whole-plant extracts better than CBD isolates?
A. Absolutely, yes! When you use whole-plant CBD oil—you’ll hear it referred to as FECO around the traps, or full-extract cannabis oil—you will benefit from the hundreds of compounds in the cannabis plant. You will benefit from not only the phytocannabinoids such as cannabidiol (CBD), but you will also benefit from the anti-inflammatory and anti-oxidant effects of the terpenes and flavonoids found in the plant. Terpenes give a plant its smell and taste, and flavonoids give a plant its colour. This beneficial interaction between hundreds of plant compounds is known as the entourage effect.
Here at Eternal Plants, our range of CBD oils are highest-quality, whole-plant extracts.
Q. Should I work with my child’s practitioner?
A. We always recommend that you work together with a qualified health practitioner when you are assessing the risks and benefits of a course of action for your child.
Q. Is CBD oil legal in Australia?
“I decided I could be civilly disobedient and just do what was right
for the children with epilepsy. That’s how I see it.”
A. Technically, CBD oil is legal on prescription in Australia, but the regulations are complex, and negotiating access is difficult. Assuming you can actually a find a doctor to prescribe it to you, you must meet stringent prescribing criteria and jump through a multitude of administrative hoops, only to receive inferior product at outrageous expense. Compare this to the UK, Canada, or most of the states in the USA, where you can readily obtain access to CBD oil. Read our more detailed article here on the legalities of CBD in Australia.
Q. How do I find a doctor in Australia to prescribe CBD oil?
A. Finding a doctor to prescribe cannabis oil of any kind in Australia—let alone one that is well versed in its applications—is a bit like winning the Willy Wonka golden ticket. Although there are very few authorised prescribers currently, most of these are in fact paediatric neurologists.
The Lambert initiative has information about the different access rules in each state. However, there are no official lists of doctors you can access. Word of mouth is probably still your best option.
“For the vast majority of Australian patients,
medicinal cannabis is little more than a pipe dream”
Q. What CBD oil will my doctor prescribe for epilepsy?
A. It is unlikely you will walk away with a prescription for a superior whole-plant CBD extract. Australian doctors are limited to a small group of very specific products including CBD isolates such as Epidiolex from GW Pharmaceuticals and similar offerings from Tilray like CBD Max. This is not because these are the best products for treating intractable epilepsy. It is because this is what the the TGA allows them to prescribe.
Read Part 2, in our four-part epilepsy series to learn more about the benefits of whole-plant extract vs CBD isolates and the results of clinical trials using CBD isolates.
“What I don’t think is useful is to put it in the hands of the pharmaceutical companies and to allow them to make enormous profits out of a product that actually probably can be consumed safely without detriment to the Australian taxpayer.”