Connecting Research: The Forum News and events about world-class research at the University of Reading Cannabis oil for epilepsy – what you need to know When Billy Caldwell’s medicinal There is evidence that Epidiolex – an FDA-approved CBD oil – could reduce epilepsy symptoms for people with certain syndromes. Find out more. I was not sure if this was a topic that could be discussed on this forum, but I do occassionally use CBD Oil without the THC in it when my s
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News and events about world-class research at the University of Reading
Cannabis oil for epilepsy – what you need to know
When Billy Caldwell’s medicinal cannabis oil was recently seized at Heathrow Airport, the drug was put back in the spotlight. Reading’s Professor Gary Stephens investigates the effects of cannabis-derived compounds on the brain. Here he gives update on the research, why it’s needed and how long it will be before new drugs will reach patients in a new post for The Conversation.
Gary Stephens with University of Reading colleagues Dr Ben Whalley and Dr Claire Williams, pictured at a Cannabis-growing site in 2011.
Epilepsy drugs don’t work well, or at all, for about one-third of people with the condition. Unfortunately, these hard-to-treat epilepsies are associated with an increased risk of premature death.
Anecdotal evidence suggests that cannabis oil may help some of these people control their seizures and potentially save their lives. A small number of studies have shown that adding cannabis oil to existing medication may be effective in devastating, hard-to-treat epilepsy in children and adolescents.
One of those people is 12-year-old Billy Caldwell. Billy was in the news recently after the cannabis oil prescribed for him was confiscated at Heathrow airport by the authorities. Billy’s mother, Charlotte, was attempting to bring the cannabis oil into the UK from Canada, where cannabis oil is legal.
Billy was seizure-free for more than 250 days when taking the oil, but his seizures started again when his cannabis oil was withdrawn. The home secretary, Sajid Javid, was persuaded to intervene and one of the seven bottles of cannabis oil was returned, with a 20-day licence to administer the medicine.
In a similar case, six-year-old Alfie Dingle, who suffers from severe epilepsy, had been successful treated with cannabis oil in the Netherlands. Alfie’s mother, Hannah Deacon, has been campaigning to allow her son to be provided with cannabis oil in the UK.
The government has now also relented in Alfie’s case following the concerns raised around the confiscation and return of Billy Caldwell’s medicine.
What the evidence shows
So what do we know about cannabis oil and its effects on epilepsy seizures?
The two main constituents of cannabis oil are THC (tetrahydrocannabinol) and CBD (cannabidiol). Oil containing CBD alone (CBD oil) can be legally bought in the UK without a prescription because it contains only very low quantities of THC. But cannabis oil that contains THC at higher levels (more than 0.3%) is illegal. THC is a schedule 1 drug, that is to say, it is deemed to have no medicinal value.
The reason that Billy’s cannabis oil was seized at Heathrow airport was that it didn’t just contain CBD, it also contained THC at higher levels than legally permitted.
There is good evidence in robust human clinical trials that CBD is of benefit for specific epilepsies, such as Dravet syndrome and Lennox Gastaut syndrome. An advantage for the pharmaceutical industry is that these rare diseases with no cure can be fast-tracked for drug development. On this basis, the US Food and Drug Administration is widely expected to grant a licence for CBD (under the tradename Epidiolex) to treat these epilepsies. If so, Epidiolex is likely to be available in US by late 2018. European approval is likely to follow.
It should be noted that Epidiolex is designed as standardised oral solution of pure plant-derived CBD. It is not the same as the non-standardised, viscous CBD oils that contain varying amounts of CBD and can be purchased in health food shops. There is currently no good evidence that formulations of CBD oil (or indeed cannabis oil) are as effective on epilepsy seizures. Equally, there is no robust evidence – just anecdotal reports – that THC helps reduce epilepsy seizures human.
In [animal studies], THC has weak overall effects in reducing seizures and has also been shown to be a less effective anticonvulsant than CBD. THC, being a psychoactive substance, also has a number of side effects, including the well-known euphoric “high” associated with recreational use – which is a significant disincentive for the pharmaceutical industry to develop a medicine containing this compound.
We now need to decide if we should expand human trials with better defined THC-containing cannabis oil, or if we should focus on CBD. The fact that Epidiolex has progressed towards approval in the US may encourage the latter course. CBD lacks psychoactive effects associated with THC and, in general, is regarded as a safe compound.
If Epidiolex is granted regulatory approval, it will also need to be monitored in a larger number of patients – in what’s known as “phase 4 post-marketing surveillance” – to ensure that it is safe and effective in a broader population. For any cannabis-based product, only large-scale clinical trials can provide definitive answers about effectiveness and safety.
This post was first published on The Conversation, 25 June 2018. Gary Stephens is Professor of Pharmacology in the University of Reading’s School of Pharmacy. His work focuses on the molecular-level processes involved in signalling between nerve cells – known as synaptic transmission – and how it is controlled, particularly in parts of the brain called the cerebellum and hippocampus. He studies how plant derived cannabinoids affect this process. You can watch him explain his work in this 60-second science video:
2 thoughts on “ Cannabis oil for epilepsy – what you need to know ”
I have a friend who suffers from epilepsy and she is using a cannabis oil. I heard its a thing now and ive heard alot of people are using this CBD oil as well. I tried searching what this CBD oil is capable of and im very fascinated to know its medical properties and how it can help many people from certain kind of disease like arthritis, compromised immune systems,muscle spasm, seizures, epilepsy, anxiety, and hair loss.. just like this review on a cannabis oil from: http://www.ilovegrowingmarijuana.com/chernobyl/. Please let me hear your thoughts or personal experience when it come with cannabis oil. Thanks
The potential use of cannabis oil and/or CBD oil is an interesting area and anecdotal evidence suggests that for some people (in particular those with childhood epilepsy), there can be benefits; however, we should be very careful about blindly believing claims of medical benefit from the variety of unregulated sources that crop up on the internet. It is often difficult to divorce such claims posted by well-meaning users from those whose agenda is to legalise recreational use. The latter is an entirely separate debate. What we can say is that those that supply cannabis and/or CBD oil for general health benefits must get approval from UK regulatory authorities to do so and they are forbidden to claim any medical benefits. We should also say that there are regulated clinical trials that show CBD solutions can be of medicinal use for specific types of epilepsy but, as yet, no similar proof exists for any cannabis and/or CBD oil. We need scientific trials of such oils before any claims can be believed.
Should you take CBD oil for seizures?
There is evidence that Epidiolex – an FDA-approved CBD oil – could reduce epilepsy symptoms for people with certain syndromes. Find out more.
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).
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.
Here is everything we know about Epidiolex, CBD oil and seizures.
What is CBD?
Cannabidiol – known as CBD – is a chemical found in cannabis plants and it is believed to help treat a number of conditions. CBD can be extracted from marijuana plants and it is usually turned into an oil that you swallow. The FDA has approved one brand of CBD oil – Epidiolex – for the treatment of people with Lennox Gastaut Syndrome, Dravet Syndrome, and tuberous sclerosis complex.
How does CBD oil stop seizures?
Researchers are still not exactly sure how CBD affects seizures, but it may help protect brain cells from becoming ‘over excited’ in a few different ways.
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Epidiolex – a CBD oil for seizures
In 2018, the Food and Drug Administration (FDA) approved the use of a new drug called Epidiolex for the treatment of three forms of epilepsy:
The medication was approved after several trials showed a significant reduction in seizures for people with these conditions (in combination with their existing anti-epilepsy drugs).
If you or someone you know has Dravet Syndrome, tuberous sclerosis complex or Lennox-Gastaut Syndrome and you would like to use this CBD oil for seizures, talk to your epilepsy specialist about Epidiolex.
Buying CBD oil for seizures at health food stores
It is possible to purchase CBD oil from health food stores in most, but not all, US states (the rules vary, so you should always check with your healthcare provider). Many companies promote the use of CBD oil for a range of conditions – from anxiety to insomnia to chronic pain. However, the Epidiolex brand is the only CBD oil that is FDA-approved to treat seizures.
If you wish to purchase CBD oil for seizures, you should always speak with your doctor first.
Side effects and interactions between CBD oil and seizure medicine
While Epidiolex (and other CBD oils) 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: CBD oil can cause sleepiness, diarrhea, fatigue, decreased appetite and, potentially, liver damage
- Interactions: CBD oil may interact with other anti-epilepsy drugs. People taking valproic acid may see an increase in liver enzymes which could cause liver damage, while people taking Clobazam may feel especially tired
Cautious optimism about CBD oil for seizures
It is always positive to learn about a new treatment for epilepsy, and the potential benefits of CBD oil Epidiolex for seizures 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.
If you would like to find out more about Epidiolex, CBD oil and seizures, speak to your doctor about how it might work for you and whether it is safe for you to try it.
I was not sure if this was a topic that could be discussed on this forum, but I do occassionally use CBD Oil without the THC in it when my seizures get really bad. It does seem to help. Medicinal marijuana and CBD Oil are not illegal in North TX if you have a medical card stating that you need it. However, there are only 2 neurologists in North TX that prescribe and the main one I believe is in Weatherford, TX (a suburb of Fort Worth) so that is well over an hour away from me. And I can’t drive… read more
@A MyEpilepsyTeam Member i keep on using the cbd oil (without thc) since the beginning of summer. it is awesome! i used to have seizures everyday. now its 1 kinda seizure a month or more. i live in nw indiana and it is legal to use cbd at a health food area. i actually used to get the cbd oil online until about a couple of months ago.
cbd can redeem epilepsy, natural pain relief and anti-inflammatory stuff, anxiety, some cancers, Alzheimer’s, and even quitting smoking. there is a lot of stuff more but this is the main ones.think about it for a sec. weed makes you calm. and it last a long time.
Hi Austin I use cbd oil legal without the thc for my granddaughter, I had to find out first if it would react to any of her medication, It do increase some side effect’s on tegretol(carbamazepine) so I reduced this to stop over 8 week’s before I started the oil. The specialist doctor cannot advise on the oil but could advise on medication it would effect. It work’s for my granddaughter by reducing the severity of seizures and frequency unless she is unwell. It is worth you going to your doctor for advice before you try as everyone is different 🙂
Austin, I saw a story on our local news that a little girl in Dallas or somewhere has seizures & her family gives her the Medical Marijuana for her seizures cause they say that’s the only thing that will help control her seizures. I don’t remember how old the girl was but they’re some where in Dallas near you I think. The school didn’t want the girl being given the medicine at school cause it went against the rules I guess of the drugs on campus or something but they’ve looked into changing the rules & I think have made arrangements now for the little girl to get her medicine now at school. Just thought I’d pass the info along. Hope your seizures stop. Enjoy your time with your family! Take care!
Your friend in Austin, Becky
I use medical marijuana along with meds – my doctor put me on it ,, it helps me for mood ( depression ,, stress ) along with my other meds – haven’t tried CBD oil but I hear good results