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Cannabis Oil for Epilepsy

Cannabis oil for epilepsy
Published on 23 February 2020

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.

Our Medical Director, Professor Ley Sander, explains why he believes they are right to exercise caution.

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.

The Association of British Neurologists (ABN) has also drawn up interim guidelines for the use of cannabis-based products in neurology for adults.

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
Every effort is made to ensure that all our information is correct and up to date. However, Epilepsy Society is unable to provide a medical opinion on specific cases. Responses to enquiries contain information relating to the general principles of investigation and management of epilepsy. Answers are not, and should not be assumed to be, direct medical advice and is not intended to be a substitute for medical guidance from your own doctors. Epilepsy Society and any third party cannot be held responsible for any actions taken as a result of using this service. Any references made to other organisations does not imply any endorsement by Epilepsy Society.

Source Epilepsy Society

Pregabalin New Warnings of increased risks for unborn baby during pregnancy

Women with epilepsy who are taking pregabalin are warned that the medication could increase risk of physical harm for a baby during pregnancy and are advised to consult their doctor. It is important never to stop taking your medication without seeking medical advice first.

New advice has been published about risks linked to the epilepsy medication, pregabalin, when taken during pregnancy.

Pregabalin is also known by the brand names Lyrica, Alzain, Axalid and Lecaent.

Studies have shown that taking pregabalin during pregnancy is associated with an increased risk of having a baby born with physical birth abnormalities.

Risks in general population

In the UK it is estimated that two or three babies in every 100 are born with a physical abnormality. 

The risk can be raised by some medical conditions and by certain medications taken during pregnancy.

Risks identified by European study

The MHRA (Medicines and Healthcare products Regulatory Agency) has reviewed results from a new study of pregabalin from four European countries. The study showed that six babies out of every 100 born to women who took pregabalin in the first three months of pregnancy, were born with physical birth abnormalities. This is compared with four in 100 babies born to mothers who were not taking pregabalin or any other epilepsy medication in early pregnancy.

The study showed that the risk around pregabalin was higher than for the epilepsy medication, lamotrigine. Both lamotrigine and levetiracetam are thought to be the safest epilepsy medications to take during pregnancy.

The study could not prove that pregabalin was the cause of the physical disabilities.

Advice for women

It is important that any woman of childbearing age who is taking pregabalin, should seek the advice of her healthcare specialist. They will be able to discuss different treatment options and the use of effective contraceptives while taking pregabalin.

If you are planning to have a baby, you should discuss your treatment options with your healthcare professional before stopping contraception.

You should never stop taking your epilepsy medication without medical advice as this could result in more seizures which could, if you are pregnant, cause harm to your baby. 

More information

To read more and to access the patient information leaflet please click here.

Epilepsy Helpline

If you have concerns and would like to talk to someone about your epilepsy, please call our Helpline on 01494 601400 (Mon-Fri 9am-4pm, Wed 9am-7.30pm).

 Soure Epilepsy Action

Uk Epilepsy Priority Setting Partnership

In November 2021, Epilepsy Research UK launched the UK Epilepsy Priority Setting Partnership (PSP) in conjunction with the James Lind Alliance and NIHR. This once in a generation national survey is collating the views of the entire UK epilepsy community including people living with the condition, families, friends, carers, those bereaved by epilepsy, healthcare professionals and charity or patient organisation representatives. The priorities we are gathering will enable us collectively to:

Fund research based on evidenced priorities that matter most to people affected by epilepsyDrive collaborations with associated condition charitiesGenerate the evidence needed to influence government and institutional funders to give epilepsy an equitable share of research funding for epilepsy

 

We need your help

I am getting in touch to ask you to join us in sharing the UK Epilepsy PSP survey with your supporters and membership. By doing so you will enable the survey to build a more complete picture of the priorities of the epilepsy and associated condition community, which will provide more accurate evidence of need to convince funders to invest in research into epilepsy.

 

To ensure the UK Epilepsy PSP is truly representative, everyone must have their say. We want to hear from people living with and working in epilepsy, including rare epilepsies and associated conditions, and their families and carers. Whilst we have had an excellent response to the survey, we do need to highlight that we have had a limited responses from men, ethnic minorities, people aged 25 and under, and people aged 65 and over.

 

Our communications team have found the following methods most effective to promote the project:

Our E:bulletins have generated the most responses. Single issue emails, featuring just the PSP and with one survey link, have performed bestRegular social media posting – Facebook has been the most successful mediumOur website news piece about the PSP and linking to the PSP survey page also received good engagement

 

We have created a ‘UK Epilepsy PSP Launch social media toolkit’ which contains supporting materials and resources to assist you with any publicity, which can be found here.

 

We are acting now to ensure that innovations in the diagnosis and treatment of epilepsy and associated conditions will no longer lag behind other conditions.  The priorities of your community are an essential component of this programme of work.

 

Thank you so much for taking the time to consider this request, and please do not hesitate to contact us at ukepilepsypsp@eruk.org.uk.

 

 

 

 

 

A Quick Christmas note from the Ipswich Epilepsy Support Group

If I’m not just talking to myself depending on the severity of your epilepsy there are benefits out there that suffers of epilepsy may be eligible for so for form filling and any benefit related advice totally free and totally confidential contact the Ipswich Disabled Advice Bureau on 01473 217313 or contact your nearest advice service or Citizen Advice Bureau for addresses and phone numbers please go to the relevant website for more information. Our links tab also has some information. They are there to help you.

Depending on your situation you may also be eligible for Fuel and Food vouchers to find out more about this contact your nearest advice centre.

Don’t forget the group may be able to totally or partially fund aids adaptions and certain white good or respite care for people who suffer from Epilepsy in the Suffolk area subject to Committee approval and funding.

Finally the group would also like to wish everyone a Happy and Safe Christmas and a Happy New Year.

M.A.C.C.Y. D.

Why it’s a MaCCCy D for us

A big thanks to McDonalds for going the extra mile when a customer had a cluster of seizures in one of their branches. Not only did staff treat her with kindness and sensitivity, but the fast food chain also shared our ‘Calm, Cushion, Call’ messaging on their social media.

Brian’s daughter was with a friend in the Leisure Park branch of McDonalds in Stevenage when she had a cluster of seizures.

Brian  afterwards took to Twitter to praise the kind and caring member of staff, Nicola, who supported his daughter saying that she was “really caring” and “sensitive” and took time to make sure his daughter was ok, while other staff covered for her.

McDonalds added their thanks to Nicola and also shared our Calm, Cushion, Call messaging with their 240k followers on Twitter.

A spokesperson for Twitter told the Epilepsy Society: “We were really pleased to share your message with our Twitter followers. It really made my week to work on this.”

McDonalds also shared the 3Cs messaging with their 43,000 crew members via their newsletter, News Bites. 

Nicola Swanborough, Head of External Affairs at the charity said: “It is really good to hear how staff supported Brian’s daughter during a seizure. And we are very grateful to McDonalds for sharing our Calm, Cushion, Call seizure first aid message on their Twitter feed and through their newsletter. This is amazingly powerful in helping members of the public to understand about seizure first aid.”

Our 3Cs campaign ‘Calm, cushion, call’

Source Epilepsy Action

 

Safe Mum, Safe Baby, Campaign

Epilepsy Society welcomes new registry but calls for expansion
The Epilepsy Society has welcomed the publication of data from a new valproate registry but called for it to be expanded to include all anti-epilepsy drugs.

Last week the first in what has been promised to be a series of reports was released examining valproate use among women between the ages of 0 and 54.

The report includes key data taken from the Medicines in Pregnancy Valproate Registry and provides information on the number of women prescribed valproate from April 2018 to September 2020.

The report provides data for all women taking valpraote, regardless of their specific medical condition.

Data shows that 47,532 women were prescribed valproate during the period of study. Of these, 180 were prescribed valproate while pregnant, including 16 women who were prescribed the drug for the first time. A further 238 women stopped taking valproate prior to becoming pregnant.

The Epilepsy Society has welcomed the registry, which is maintained by the Medicines and Healthcare products Regulatory Agency (MHRA) and NHS Digital, but believes it does not go far enough.

On Tuesday, the Epilepsy Society launched our Safe Mum, Safe Baby campaign which seeks to ensure safer medication for pregnant women with epilepsy. As part of this campaign, we are calling for an immediate expansion of the Medicines in Pregnancy Valproate Registry to include all epilepsy drugs.

A recent report from the Commission on Human Medicines highlighted growing evidence that many epilepsy drugs, not just valproate, can cause physical and neurodevelopmental harm to a baby when taken by pregnant women with epilepsy. Although the risk of such harm is not as high as for valproate, it is nevertheless significant. Drugs highlighted in this report include carbamazepine, topiramate, phenytoin and phenobarbital.

Commenting, Nicola Swanborough, Head of External Affairs for the Epilepsy Society said:

“A registry that captures real-life experiences at grass root level is imperative if we are to understand the potential risks posed by epilepsy medications during pregnancy.

“We very much welcome the development of a valproate registry which is a testament to the families who have fought relentlessly to see this introduced.

“Now we must learn from their experience and ensure that the registry is expanded to include all epilepsy medications. That has to be a critical first step towards the development of safer epilepsy medications that won’t force women to choose between their own safety and that of their babies.”

It is clear that more needs to be done to collect and disseminate accurate data on the use of all anti-epileptic drugs in pregnancy.

While the MHRA have promised that they “plan over time” to include all epilepsy medications in the registry there is currently no clear timeframe for this.

The Epilepsy Society is calling for the registry to be expanded as a matter of urgency to include individual data relating to all anti-epileptic drugs, so that scientists and researchers can identify specific risk factors and develop safer treatment options.

At the Epilepsy Society we work closely with pregnant and postnatal women with epilepsy to ensure they have the best possible access to health guidance. A lack of data about commonly prescribed epilepsy drugs can therefore have serious consequences.

We believe that women need better, safer choices of medication. Through our Safe Mum, Safe Baby campaign we intend to make this a reality.

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Source Epilepsy Action

Some Myths about Epilepsy

Epilepsy myths

Epilepsy is often misunderstood with different facts and myths surrounding the condition despite over 500,000 people in the UK having epilepsy. We want to dispel the many myths that still exist and bring you important information about seizures, seizure triggers and epilepsy first aid.

MYTH 1: You shake and jerk when you have epilepsy

FACT 1: Not every seizure means a person shakes and jerks, nor is a person always unconscious during a seizure. Shaking and jerking while unconscious are usually associated with tonic clonic seizures. There are a range of seizures which have different side effects and can affect people differently. 

MYTH 2: Flashing lights cause seizures in everyone with epilepsy

FACT 2: Around 1 in 100 people has epilepsy, and of these people, around 3% have photosensitive epilepsy. Photosensitive epilepsy is more common in children and young people (up to 5%) and is less commonly diagnosed after the age of 20. Triggers differ from person to person, but common triggers include a lack of sleep, stress, and alcohol. 

MYTH 3: You can restrain someone during a tonic clonic seizure and put your finger in their mouth

FACT 3: During a tonic clonic seizure you should never hold the person down or put anything in their mouth. It’s important to know exactly what to do when someone has a tonic clonic seizure so that you can act quickly. 

MYTH 5: The only side effects of a seizure are tiredness and being confused

FACT 5: Having epilepsy can affect people in different ways. Knowing that a person ‘has epilepsy’ does not tell you very much about what happens for them or how epilepsy affects them. For example, some people may have problems with sleep or memory and for some people epilepsy may affect their mental health. 

Information updated: January 2021
Source Epilepsy Foundation

Epilepsy in Animals

Seizures and epilepsy in pets

It can be very upsetting if your pet unexpectedly has a seizure. The best thing to do for your pet is to stay calm. Try and remember our helpful seizure management tips below and then get help from a vet straight away.What are seizures?

Seizures are more commonly called ‘fits’. They happen when usual electrical activity in your pet’s braqin causes them to lose control of their muscles. 

A fit, which can look like a twitch or uncontrollable shaking, can last for a few seconds or for several minutes. Your pet might have one seizure in their lifetime or they could have a condition called epilepsy, which can cause frequent fits if your pet doesn’t get treatment.  

The signs your pet is having a fit

If your pet is about to have a fit, you might notice them behaving oddly. Some animals may look dazed or stare off into the distance before a seizure. They can seem confused or nervous. If your pet has regular fits you might learn to notice these signs so you can tell when a fit is coming.

Although seizures aren’t immediately life-threatening, your pet may lose control of their body, which can be frightening.

Here are some things that usually happen if your pet has a fit:

Fierce trembling or jerking.Glazed eyes.They may dribble.Their jaw could be clamped shut.They might wee or poo during the fit.They might stop reacting to your voice or touch.

What to do if your pet has a fit

It can be very scary if your pet is having a seizure, especially for the first time. The best thing you can do is keep calm and follow our first aid advice.

FIRST AID FOR SEIZURES

Call your vet straight away for advice. They might not tell you to bring your pet in right away – it depends on how long the fit lasted and any other symptoms that came with it. Their fit may have been caused by an underlying illness which you don’t know about. The fits could get worse with time and, if they aren’t treated, your pet’s life could be in danger so getting advice from a vet on this is essential.

If your pet has had a seizure which lasts over five minutes or has more than one seizure in a day, it’s important to get them seen by a vet immediately.

Helping your pet recover

Your pet will probably be very dazed and confused after they’ve had a fit. Give them somewhere calm and comfortable to recover. Your vet can offer more advice about how to help your pet recover. Try speaking softly and gently to your pet. This might help them keep calm, especially as they come round after their fit.

What causes pets to have fits?

There are many reasons your pet might have a fit. Sometimes it’s a one-off episode, but a seizure can also be a sign of a more serious underlying condition.

Common causes are:

Pets suffering from epilepsy can have regular fits and sometimes need medication to keep them under control.If your pet has an untreated illness – such as kidney disease or diabetes – they might have fits.Head trauma. If your pet has fallen over or knocked their head on something, they could have a fit.Heat stroke. Overheating is very serious for pets and could cause them to have a seizure. You can find out more about the signs and symptoms of heatstroke here.Some poisons can affect your pet’s brain and cause them to have a fit. If you’ve noticed them eating or drinking anything them shouldn’t, speak to your vet immediately. You can find out more about common poisons and hazards here.

What is epilepsy?

Epilepsy is a condition that can cause regular fits. Seizures might be triggered by something in the pet’s environment, like bright lights or loud noises, or even high levels of excitement or stress.

There’s no cure for epilepsy and we’re still not sure what causes some pets to have it and not others. The good news is that epilepsy can usually be managed with medication and regular check-ups. Most epileptic pets go on to live very happy and normal lives, so long as their owner works with their vet to keep on top of the condition.

Epilepsy can happen in any pet, but dogs are more likely to suffer from it. They usually start to show signs of epilepsy at around 2-3 years old, although it can develop at any age. Certain breeds are more likely to develop it than others, including:

Irish SettersGolden RetrieversDachshundsPoodlesGerman Shepherds.
Source PDSA

 

What’s Epilepsy?

Epilepsy is a chronic disorder, the hallmark of which is recurrent, unprovoked seizures. A person is diagnosed with epilepsy if they have two unprovoked seizures (or one unprovoked seizure with the likelihood of more) that were not caused by some known and reversible medical condition like alcohol withdrawal or extremely low blood sugar.

The seizures in epilepsy may be related to a brain injury or a family tendency, but often the cause is completely unknown. The word “epilepsy” does not indicate anything about the cause of the person’s seizures or their severity.

Many people with epilepsy have more than one type of seizure and may have other symptoms of neurological problems as well. Sometimes EEG (electroencephalogram) testing, clinical history, family history, and outlook are similar among a group of people with epilepsy. In these situations, their condition can be defined as a specific epilepsy syndrome.

Essentially, anything the brain can do, it can do in the form of a seizure.

Although the symptoms of a seizure may affect any part of the body, the electrical events that produce the symptoms occur in the brain. The location of that event, how it spreads, how much of the brain is affected, and how long it lasts all have profound effects. These factors determine the character of a seizure and its impact on the individual.

Having seizures and epilepsy can affect one’s safety, relationships, work, driving, and so much more. Public perception and treatment of people with epilepsy are often bigger
Source Epilepsy Foundation

The Flue Jab and Epilepsy

What about the flu jab?

The JCVI has said that the Covid-19 vaccine booster and the flu jab can be given at the same time. However, people with epilepsy are not automatically entitled to the flu jab. This is at the discretion of your GP.

The NHS has published a list of serious long-term health conditions which qualify for the free flu vaccine. However, it stresses the following:

“Talk to your doctor if you have a long-term condition that is not in one of these groups. They should offer you the flu vaccine if they think you’re at risk of serious problems if you get flu.”

This means that anyone with epilepsy is entitled to request a free flu vaccine from their GP, even though they are not in the defined risk group.
Sour Epilepsy Action