Cannabis oil for epilepsy
Published on 23 February 2020
Updated: 2 February 2021
Authored by Anonymous
Cannabis oil for epilepsy
On 1 November 2018, the Government’s landmark decision to reschedule some cannabis based products for medicinal use, came into force. The change in law means that specialist doctors in the UK can now prescribe medicinal cannabis to people with a limited number of conditions, including epilepsy. Here we explain what the change in law means for people with epilepsy.
What is cannabis?
Cannabis is made up of hundreds of different components. The most well known are two cannabinoids: CBD – cannabidiol – and THC – tetrahydrocannabinol. These are found naturally in the resin of the cannabis plant.
THC is the psychoactive compound in cannabis. It is responsible for the “high” people feel. The legal limit of THC content in a product, as stipulated by the Home Office, is 0.2%.
CBD is not psychoactive and it is thought to be responsible for many of the medical benefits associated with cannabis.
What is medicinal cannabis?
The Government has defined a cannabis-based product for medicinal use in humans as one that:
“Is or contains cannabis, cannabis resin, cannabinol or a cannabinol derivative; is produced for medicinal use in humans and is a medicinal product, or a substance or preparation for use as an ingredient of, or in the production of an ingredient of, a medicinal product”.
Guidance around prescribing cannabis-based products
In August 2019, NICE – the National Institute of Health and Clinical Excellence – announced that it would not be recommending that cannabidiol, a medicinal cannabis in the form of Epidyolex, should be prescribed on the NHS for children with two severe forms of epilepsy. This is on account of the fact that its long-term effect remains unclear.
The body also has concerns about the ‘viability of the economic model’ used by GW Pharma, the company that developed the drug, to establish the cost to be charged to the NHS for it. It concluded that Epidyolex would not, at this stage, be an effective use of NHS resources.
The recommended guidelines are still only draft and the consultation closes on 16 September. So there is still time for you to have your say and let them know what you think. Professor Sander will be doing the same. All comments received will be considered by NICE and final guidance is likely to be published in November 2019.
The British Paediatric Neurology Association (BPNA) has drawn up interim guidance around epilepsy on behalf of NHS England.
Guidance for other conditions is being drawn up the Royal College of Physicians with the Royal College of Radiologists (RCR) and the Faculty of Pain Medicine of the Royal College of Anaesthetists.
Guidance from the Association of British Neurologists (ABN)
Interim guidance from the ABN states that there is only published evidence for the use of medicial cannabis in Dravet syndrome and Lennox-Gastaut syndrome. Prescriptions should only be for cannabidiol.
Although the label Lennox-Gastaut is often broadly attached to severe epilepsies with compatible seizure types and intellectual disabilities, it is important that there is a clear syndromic diagnosis.
Dosing data for adults is currently very limited, although more information is expected shortly.
Guidance from the British Paediatric Neurology Association (BPNA)
The BPNA guidance states that non-licensed medicinal cannabis should only be considered for children who:
- have an epilepsy that does not respond to conventional licensed anti-epileptic medications
- have not responded to the ketogenic diet or who are not suitable for the ketogenic diet
- who are not candidates for epilepsy surgery.
The BPNA states that the current best evidence for medicinal cannabis is CBD, a highly purified liquid, which has been licensed in the US by the Food and Drug Administration and is currently going through the application process for a licence from the European Medicines Agency.
CBD does not contain any significant amount of THC, the component of cannabis associated with producing a ‘high’.
What is the evidence?
The reason that the BPNA is only recommending CBD is that there is some evidence to show that this newly developed drug can be effective in reducing some type of seizures in Dravet and Lennox Gastaut syndromes.
Three double blind randomised controlled trials of pure CBD in children and young people with these syndromes has shown a greater reduction in monthly seizures compared to placebos. There was also a greater reduction in drop seizures in people taking CBD compared to those on a placebo. Further open label studies have shown that it may also have an anti-epileptic effect in the epilepsies in general.
What is the evidence around THC?
While some studies have also suggested that THC may have an anti-epileptic effect, animal studies suggest it can also trigger seizures. There is no evidence from randomised controlled clinical trials for products with higher proportions of THC (more than 0.2 per cent).
Concerns have also been raised about the effect of THC on the developing brain in children and young people. Evidence suggests that chronic exposure to THC can affect brain development, structure and mental health.
There is also no good scientific evidence to support suggestions that the addition of THC in combination with CBD increases the efficacy of cannabis-based medicinal products for children.
“Clinicians should not feel under pressure to prescribe cannabis-based medicinal products until they have undergone proper clinical trials,” says the BPNA.
“We recommend that these products undergo randomised clinical trials for efficacy and safety before they are routinely prescribed in the UK. We welcome the rescheduling of these products from Schedule 1 to Schedule 2 that will enable their investigation in clinical trials.”
Children already on products containing THC
The BPNA also recommends that where children are already taking other cannabis-based products that contain higher proportions of THC, they should be transitioned on to CBD until strong evidence for these products can be produced through clinical trials.
The Government has no plans to legalise the use of cannabis for recreational purposes. Possession of cannabis is illegal. This includes cannabis for medical use unless it has been prescribed for you.
Getting a prescription for medicinal cannabis
Cannabis-based medicinal products can only be prescribed by a specialist. A GP cannot prescribe the medication but could refer you to a specialist.
The specialist will discuss all other treatment options with you first before considering a cannabis-based product.
A prescription for medicinal cannabis would only be given when all other treatment options have been tried or are considered unsuitable, and would only be given if the doctor considers it to be in your best interests.
People always have the option of seeking a second opinion.
Health food shops
There is also a wide range of other cannabis products available on the internet and in some commercial outlets such as health food outlets and from cannabis ‘dispensaries’ internationally. These products are of unknown quality and contain CBD and THC in varying quantities and proportions.
MHRA is working with individual companies to ensure that CBD-based products that make medicinal claims should be licensed and meet safety, quality and efficacy standards to protect public health. To date, the MHRA has licensed no other cannabis based medicinal products as medicines.
With talk in the media about the use of cannabis products to treat epilepsy, generating interest…
Cannabidiol (CBD) for Epilepsy Treatment
Epidiolex, a precription form, is approved for some seizures
Claudia Chaves, MD, is board-certified in cerebrovascular disease and neurology with a subspecialty certification in vascular neurology. She is an associate professor of neurology at Tufts Medical School and medical director of the Lahey Clinic Multiple Sclerosis Center in Lexington, Massachusetts.
Cannabidiol (CBD)—a component of the marijuana plant—has gotten a lot of attention for medical use, including the treatment of epilepsy. Epidiolex is the only prescription form of CBD available, and it was approved by the U.S. Food and Drug Administration (FDA) in June 2018 for the treatment of seizures in two hard-to-treat forms epilepsy—Lennox-Gastaut syndrome (LGS) and Dravet syndrome. Epidiolex is approved for adults and children over the age of 2 who have one of these rare disorders.
How It Works
Seizures are caused by erratic electrical activity in the brain that can spread and cause uncontrolled physical movements and/or alterations of consciousness. Most anti-seizure drugs work by slowing down excitatory nerve activity in the brain.
However, LGS and Dravet syndrome may be treated with medications that aren’t commonly used for most types of epilepsy. Additionally, they often require two or more anti-seizure drugs for seizures to be under control.
It is not completely clear why CBD can reduce some types of seizures. It is known to have a range of biochemical effects on nerve cells in the brain, some of which may have an impact on seizures. Medical research on CBD is still in its early stages.
Prescription CBD is specifically recommended for control of seizures in LGS and Dravet syndrome.
LGS is a developmental disorder that begins in early childhood and is characterized by multiple seizure types, as well as physical and cognitive deficits. The seizures of LGS are difficult to control and are managed with a different medication regimen than that which is used for most epilepsy types.
Dravet syndrome is a developmental disorder that begins in early childhood and is associated with multiple seizure types as well as seizures triggered by fevers. People with Dravet syndrome often have behavioral challenges and learning difficulties.
Even with treatment, people with LGS or Dravet syndrome may continue to experience persistent seizures.
However, studies have shown that CBD, when taken with other anti-seizure medications, reduces the frequency and severity of seizures in people who have these disorders.
A 2019 review of studies on Epidiolex showed a sustained seizure frequency reduction of between 30 and 63 percent. Additionally, seizures were about half as severe and the postictal (after seizure) state was less severe as well.
What About Other Seizure Types?
Studies using CBD for seizure control are focused on refractory seizures, which are seizures that are not easily controlled with anti-seizure treatments. It’s still too soon to tell whether it will be beneficial and tolerable for people with other seizure types. As such, CBD is not approved for other types of seizures or epilepsy itself at this time.
Cannabidiol is a controversial treatment because it is one of the components of marijuana, a widely known recreational drug. There are strong opinions about the drug, and proponents advocate for its legalization for medical uses, while some advocate for the legalization of recreational use as well.
At this time, cannabidiol has been proven effective for only a few medical conditions. Due to the side effects, it is recommended to be used with caution.
If you have questions regarding whether cannabidiol is an appropriate treatment for you or someone you know, talk to your doctor first. You can use our Doctor Discussion Guide below to help start that conversation about treatment options and more.
Epilepsy Doctor Discussion Guide
Get our printable guide for your next doctor’s appointment to help you ask the right questions.
Epidiolex comes in an oral solution (liquid form), and the recommended dose is initiated based on weight.
It is generally started at a dose of 2.5 mg/kg twice per day and increased weekly. It can be increased up to a dose of 20 mg/kg per day if needed, but increased side effects have been found to occur at the higher dose.
Anti-seizure medications should be taken at the regularly scheduled times without skipping or combining doses.
Sometimes, children and adults who have LGS or Dravet syndrome have some difficulties taking oral medication due to difficulty swallowing, behavioral problems, and/or cognitive issues. It may be a challenge to get your child to take any medication, and you might need to develop strategies to help with this process.
The side effects of CBD that have been reported in the studies when it was added to other antiseizure medications included:
- Upper respiratory tract infection/rhinitis
- Generalized fatigue
- Sleeping difficulties
- Decreased appetite
- Status epilepticus (prolonged seizure requiring emergency attention)
In studies, these were more common in the first two weeks on Epidiolex, after which time they tended to diminish. Additionally, many of the studies on the drug involved at least one other anti-seizure drug as well, so the side effects may not all have been due to Epidiolex.
More severe side effects, which you should contact your doctor about right away, include:
- Symptoms of liver injury:Jaundice (a yellowish color of the skin and eyes), abdominal pain, vomiting, and dark colored urine
- Mood changes: Depression, anxiety, and suicidal ideation
CBD itself does not have abuse potential and does not produce the “high” that is typical of marijuana, so you do not need to worry about your child abusing the drug or becoming addicted to it. However, it is possible that others may misunderstand the effects of the drug, particularly because it is new and because it is derived from the same plant that marijuana is derived from.
There’s still much to be learned about how CBD interacts with other anti-seizure drugs.
It’s possible that CBD may raise the blood level of certain other anticonvulsants such as Topamax and Onfi (clobazam), and may result in side effects.
When used with other anti-seizure drugs, CBD can cause elevated liver enzymes, which is often a sign of liver injury.
In the aforementioned 2019 review of studies on this drug, however, researchers found that while adding Epidiolex to a treatment regimen may increase certain specific side effects, it may actually decrease the overall amount of side effects participants experienced.
Over-the-Counter CBD Products
A multitude of CBD-containing products are on the market, and some people have chosen to use them for seizure control. This trend is likely to grow, especially since the 2018 Farm Bill made hemp-derived products, including CBD, legal at the federal level.
However, these products aren’t regulated by the FDA and are largely untested. The FDA has warned that CBD products are often mislabeled or overpromise their supposed benefits. Dosage and quality are likely to be far less consistent with other CBD products, which may put you at risk for more seizures.
In fact, the FDA has issued warnings to many CBD businesses for illegal practices, including those related to the marketing of their products. In some cases, actual CBD content was negligible or less than 1 percent of what the label claimed.
A 2017 study published in JAMA found that 26 percent of products purchased online contained less CBD than their labels claimed.
Some other CBD products contained other compounds from the marijuana plant, including tetrahydrocannabinol (THC)—the part that gets you “high.”
A Word From Verywell
Given that CBD is a fairly new therapy for epilepsy, you may experience challenges when it comes to health insurance coverage or availability of the medication. If you do, be sure to involve your doctor, who can provide documentation that can help you get an approval for coverage and may be able to refer you to a source that will fill your prescription.
Epidiolex contains cannabidiol (CBD) from the marijuana plant. It is approved to treat Lennox-Gastaut syndrome and Dravet syndrome. Learn about safety and more.