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

People with epilepsy included in priority group 6 for Covid vaccine

Epilepsy Action have spoken directly with the Department of Health and Social Care (DHSC) who have assured us that epilepsy is included in priority group 6 as defined by the Joint Committee on Vaccinations and Immunisations.

The main risk groups identified by the Committee are as follow

Chronic respiratory disease, including chronic obstructive
pulmonary disease (COPD), cystic fibrosis and severe asthma
Chronic heart disease (and vascular disease)
Chronic kidney disease
Chronic liver disease
Chronic neurological disease including epilepsy
Down’s syndrome
Severe and profound learning disability
Diabetes
Solid organ, bone marrow and stem cell transplant recipients
People with specific cancers
Immunosuppression due to disease or treatment
Asplenia and splenic dysfunction
Morbid obesity
Severe mental illness.
Other groups at higher risk, including those who are in receipt of a carer’s allowance, or those who are the main carer of an elderly or disabled person whose welfare may be at risk if the carer falls ill, should also be offered vaccination alongside these
Source Epilepsy Action

TikTok to introduce features that filters photosensitive Videos

Epilepsy Society welcomes the news that TikTok is introducing a new feature that filters photosensitive videos. This is a significant step in helping to safeguard users with epilepsy.

The platform’s new feature will allow users to filter content that falls within the photosensitive range and remove it from their TikTok feed. Potentially photosensitive content will carry a warning and will give users the option to filter all future photosensitive videos. The feature is scheduled to be launched in January 2021.

TikTok is a video sharing platform with 3.7 million daily active users in the UK alone. This equates to approximately 1100 people with photosensitive epilepsy in the UK using the platform. With 800 million active users worldwide, approximately 240,000 people with photosensitive epilepsy will be using the platform.

Epilepsy Society raised concerns with TikTok around harmful content on the platform after being alerted by the charity’s supporters to strobe video filters and “seizure challenge” trends. The charity hopes this will encourage other social media platforms to introduce robust software to safeguard users with epilepsy from online harm.

Nicola Swanborough, Acting Head of External Affairs at the Epilepsy Society has said: “It is extremely encouraging to see a platform with such a significant following as TikTok introducing algorithms to detect photosensitive content and protect people with epilepsy. We hope that the platform’s new feature will turn up the heat on other big players in the industry to take the safeguarding of its users with epilepsy seriously.

“TikTok’s move has demonstrated that where there is a will to do so, technology can be developed at speed to protect people from physical and emotional harm. Our message to the other social media companies is clear; if TikTok can do it, so can you!”

Support our #ZachsLaw campaign
Source Epilepsy Action

Epilepsy Research Uk

Epilepsy Research UK is a British medical research charity dedicated to funding and supporting research into epilepsy.

epilepsyresearch.org.uk
In March 2007, the Epilepsy Research Foundation merged with the Fund for Epilepsy to become Epilepsy Research UK (ERUK). ERUK is the only national organisation exclusively dedicated to driving and enabling research into epilepsy. Their vision is ‘a life free from epilepsy’.

The research projects and fellowships the organisation supports are reported to be of the highest scientific merit as they are subject to rigorous scrutiny, involving a Scientific Advisory Committee, independent expert opinion, interviews and peer review.[2] The clinical research portfolio discovers ways to advance the medical care and management of people living with epilepsy and the lab-based scientific projects investigate causes and methods for improved diagnosis, treatment and prevention.

The organisation also plays a key role in developing the next generation of epilepsy research leaders, and capacity building the research community. The Expert Workshop programme is internationally renowned and the dissemination activities aim to forge local and global collaborations.[3] The organisation is also committed to accelerating innovations that improve clinical practice and health policy through partnership working and advocating for further investment in research.

Sourch epilepsyresearch.org.uk

Epilepsy in the Work Place

Do I have to tell an employer about my epilepsy?

You don’t automatically have to tell your employer about your epilepsy, after a job offer, if you don’t believe it will affect your ability to do your job safely and effectively. An example could be that your epilepsy is well controlled, or you only ever have sleep seizures.

If you don’t tell your employer about your epilepsy and it does affect your ability to do your job safely, your employer may be able to dismiss you. To do this, they would have to prove that:

You have been given the opportunity to tell them how your epilepsy could affect your job and
You haven’t given them this information
If you’re not sure whether to tell your employer about your epilepsy, here are some things to think about:

Reasonable adjustment
If your employer doesn’t know about your epilepsy, they can’t make any reasonable adjustments to help you.

Health and Safety at Work Act
The Health and Safety at Work Act (1974) is a law that says that all employers must provide a safe workplace. To do this, they must protect all their employees from any possible danger to their health while they are at work. As an employee, you also have a responsibility to take reasonable care of your own and other people’s health and safety at work. If your epilepsy could cause a health or safety risk to you or anybody else, you must tell your employer about it. This is the law.

Employer’s insurance
Your employer’s insurance may pay you compensation if you are injured at work, or if you become ill because of your work. If you don’t tell them about your epilepsy, you won’t be fully covered by their insurance. So, you might not receive any compensation if you have an accident related to your epilepsy.

However, you are protected by the equality laws from the time you tell your employers you have a disability. So, if your seizures have previously been controlled, but start again, you can tell your employer then, and ask them to do a health and safety risk assessment.

More information about the Health and Safety at Work Act and employer’s insurance is available from the Health and Safety Executive (HSE) (for England, Scotland and Wales) or nidirect.gov.uk (for Northern Ireland)

When is it a good time to tell people about my epilepsy?
Your employer
If you decide to tell your employer about your epilepsy, it’s a good idea to do it before you start the job. This gives them time to make any reasonable adjustments you need. If you don’t tell them about your epilepsy before you start a job, you can change your mind and tell them at any time. As soon as your employer knows about your epilepsy, they should look to put in place reasonable adjustments that would reduce or remove any disadvantage caused by your disability.

The people you work with
It’s your decision, whether you tell the people you work with about your epilepsy. But if you do, they may feel more confident about helping you if you have a seizure.

If you think it would help, ask your employer to arrange some epilepsy awareness training for your colleagues.

Can my employer tell other people about my epilepsy?
Yes, if you give them permission, and sign a consent form. But they can’t tell other people about your epilepsy without your permission. This is to comply with the Data Protection Act.

Source Epilepsy Action

Covid 19 and Epilepsy

Does having epilepsy put me at increased risk from coronavirus?
Some research suggests people with epilepsy could have a slightly increased risk of getting seriously ill or dying from coronavirus. Because of this possible slight increased risk, people with epilepsy aged 16-64 were invited to receive the COVID-19 vaccine earlier than people without underlying health conditions.

Research by Public Health England shows that vaccination against COVID-19 is highly effective in people with underlying health conditions. So if you have received both doses of a COVID-19 vaccine you should have a high level of protection from getting ill with COVID-19. But no vaccine offers complete protection and cases are still high. As many restrictions end, it’s still important to follow the general guidance to help keep yourself and others safe. This includes meeting people outside or opening windows to let fresh air in if you meet indoors, wearing a face covering in crowded places and washing your hands regularly.

Are the COVID-19 vaccines safe for people with epilepsy?
The Association of British Neurologists says all COVID-19 vaccines are safe for people with neurological conditions such as epilepsy. The COVID-19 vaccines approved for use in the UK have met the strict safety standards set by the Medicines and Healthcare products Regulatory Authority (MHRA). So far, millions of people have received a COVID-19 vaccine and reports of serious side-effects, such as allergic reactions, have been very rare.

COVID-19 vaccines are not expected to interact with epilepsy medicines. This means the vaccine should not affect how your medicines work, and your medicines should not affect the vaccine.

Like other vaccines, COVID-19 vaccines can cause mild or moderate side-effects including fever. Not everyone will get side-effects, but if you do, most will go away after a few days. For some people with epilepsy, fever can make them more likely to have a seizure. If you are concerned about fever, the International League Against Epilepsy says that taking a fever-reducing medicine such as paracetamol for 48 hours after you have the vaccine reduces the risk. For most people, the risk of serious illness from COVID-19 infection far outweighs the risk of side-effects from the COVID-19 vaccine.

The MHRA has more information about the vaccines approved for use in the UK.

How can I get the COVID-19 vaccine?
People with epilepsy aged 16-64 were included in one of the priority groups to receive the vaccine early, so most people with epilepsy should already have been invited to get the vaccine. If you are 18 or over and think you may have been missed, or haven’t booked your appointments yet, you can book now. For more information and to book your appointments for a first and second dose, visit the website for the place where you live:

England
Northern Ireland
Scotland
Wales

People with epilepsy aged 16 and 17 are also eligible for the COVID-19 vaccine, but online booking is not available in all parts of the UK for this age group. If you are in this age group and have not been invited to book a COVID-19 vaccination, contact your GP.

Source Epilepsy Action

Government Travel Health Care Information Abroad

Guidance and support

Part of
Travel abroad: step by step
Guidance
Healthcare for UK nationals visiting the EU
How to get state healthcare when you’re on holiday or travelling to a country in the EU, Iceland, Liechtenstein, Norway or Switzerland.

From:
Department of Health and Social Care and Foreign, Commonwealth & Development Office
Published
28 January 2019
Last updated
12 February 2021 — See all updates
Contents
Coronavirus (COVID-19) travel advice
Apply for a GHIC
Visiting Norway, Iceland, Liechtenstein and Switzerland
Using your EHIC or GHIC
Travelling with a health condition
Travelling to have planned treatment

Coronavirus (COVID-19) travel advice
See the latest health advice for UK travellers following the outbreak of coronavirus (COVID-19).

This information is about visiting the EU, Norway, Iceland, Liechtenstein and Switzerland. There’s different guidance for healthcare if you’re:

visiting Spain
visiting Ireland
going to live, study or work in the EU
When you travel to an EU country you should have either:

a European Health Insurance Card (EHIC)
a UK Global Health Insurance Card (GHIC)
travel insurance with healthcare cover
An EHIC or GHIC is not a replacement for travel insurance. Make sure you have both before you travel.

Each healthcare system is different, and in some countries you’ll need to pay to have treatment.

Apply for a GHIC
A GHIC lets you get medically necessary state healthcare in Europe at a reduced cost or sometimes for free.

If your EHIC is still in date, you do not need to apply for a new GHIC.

They’re both valid if you’re travelling to an EU country.

Apply for a GHIC for free on the NHS website.

Visiting Norway, Iceland, Liechtenstein and Switzerland
You can use a UK passport to get medically necessary healthcare in Norway.

GHICs and most UK EHICs are not valid in Norway, Iceland, Liechtenstein and Switzerland. Make sure you take out travel insurance with medical cover for your trip.

You may not have access to free emergency medical treatment and could be charged for your healthcare if you do not get health cover with your travel insurance.

Visits that started in 2020 and end in 2021
If you started your visit to Iceland, Liechtenstein or Switzerland before 1 January 2021, your UK EHIC entitlements will continue until you leave that country.

Who can use a UK-issued EHIC
Some people can get a new UK-issued EHIC which is valid for visits to Norway, Iceland, Liechtenstein and Switzerland.

You’ll be able to apply if you’re:

an EU, Norwegian, Icelandic, Liechtenstein or Swiss national, and started living in the UK before 1 January 2021
receiving a UK State Pension or some other ‘exportable benefits’, and started living in the EU, Norway, Iceland, Liechtenstein or Switzerland before 1 January 2021
a ‘frontier worker’ (someone who works in one state and lives in another), and started being one before 1 January 2021, for as long as you continue to be a frontier worker in the host state
an eligible family member or dependant of one of the above
Apply now for your new UK EHIC on the NHS website.

UK students using an EHIC
If you started living and studying in Norway, Iceland, Liechtenstein or Switzerland before 1 January 2021, you need to apply for a new UK-issued EHIC.

This entitles you to medically necessary state healthcare until the end of your course.

Using your EHIC or GHIC
An EHIC or GHIC covers state healthcare, not private treatment.

With an EHIC or GHIC you can get emergency or necessary medical care for the same cost as a resident in the country you’re visiting. This means that you can get healthcare at a reduced cost or for free.

Find out what your card covers in each country. You can select the country you are planning to visit from the drop-down list.

An EHIC or GHIC is not a replacement for travel insurance – it does not cover everything, such as mountain rescue or being flown back to the UK (medical repatriation). Make sure you have both before you travel.

You’ll need to pay in full for treatment if you do not have an EHIC, GHIC or provisional replacement certificate (PRC).

The following European countries do not accept the EHIC or GHIC:

the Channel Islands, including Guernsey, Alderney and Sark
the Isle of Man
Monaco
San Marino
the Vatican
If you do not have your EHIC or GHIC with you
You’ll need to apply for a Provisional Replacement Certificate (PRC) if you need treatment and you do not have your EHIC or GHIC, or your card is lost or stolen abroad.

Call the Overseas Healthcare Services. This is part of the NHS Business Services Authority (BSA).

NHS Overseas Healthcare Services
Telephone: +44 (0)191 218 1999
Monday to Friday, 8am to 6pm
Travelling with a health condition
Buy travel insurance with healthcare cover for your condition. Your EHIC or GHIC will cover medically necessary treatment.

If you need to have treatment while you’re abroad, you may need to pre-arrange it. For example, if you need dialysis or oxygen treatment. Speak to your doctor in the UK for advice before you travel.

UK prescriptions can be used in Ireland and Spain. You cannot use a UK prescription elsewhere in the EU.

Bringing medicine with you
Before you travel, make sure you either:

take enough medication to last the duration of your trip
can get any medicine you need in the country you’re going to
Check with the embassy, high commission or consulate for the country you’re visiting about local rules on any specific medicines.

You need a letter to prove your medicine is prescribed to you if it contains a ‘controlled drug’. You may need to show this at the border when you’re entering or leaving the UK.

You may also need a licence for controlled drugs if:

your trip is longer than 3 months
you’re travelling with more than 3 months’ supply
Read more about travelling with controlled medicines.

Read guidance from NaTHNaC on best practice when travelling with medicines.

Getting prescriptions
If you need to get prescribed medicine while you’re away, speak to a pharmacist in the country you’re visiting. You may need a prescription from a local doctor.

You may have to pay something towards the cost of your prescription.

If you have an EHIC or GHIC, you should pay the same as a citizen of the EU country you’re visiting. Make sure your prescription is from a state-approved doctor in the EU.

Travelling to have planned treatment
You cannot use an EHIC or GHIC for planned treatment. For example, if you’re going abroad to give birth.

Read the NHS guide to going abroad for medical treatment.

Published 28 January 2019
Last updated 12 February 2021

Step1:
Plan your trip

Step2:
Get your passport, visas and permits ready

Step3:
Get travel insurance and check if you need vaccinations or inoculations

this section
Step4:
Travel safely during COVID-19

Step5:
When you’re abroad

Follow the local COVID-19 restrictions
Find out what to do if:

you’re unable to return to the UK because of COVID-19
You are currently viewing:you need to access healthcare in the EU
you’re in a crisis abroad
you’re arrested abroad
you’re a victim of a crime abroad.

Source direct gov for more information please go to there website