Travelling with epilepsy: Everything you need to know

Are you organising your next trip away? Do you or your loved one have epilepsy and are you worried it might get in the way of your travel plans?

To help you feel more confident about planning your trip, we’ve compiled a step-by-guide that tells you everything you need to know about travelling with epilepsy, including travel insurance for people with epilepsy, how flying affects your condition and travelling with epileptic children.

What to consider before planning your trip

You should plan to travel with a companion unless you are confident that you will not need any assistance while on holiday.

If you are travelling alone, download 'The Traveller’s Handbook for People with Epilepsy', published by The International Bureau for Epilepsy, which includes first aid information and useful phrases in multiple languages.

Risks of travelling with epilepsy

Travelling with epilepsy is relatively low-risk for most people. However, there are a few factors to be aware of. These are:

Jet lag

Extreme tiredness caused by jet lag can cause seizures for some people living with epilepsy. This can be dangerous during flight. To combat jet lag, you should be prepared to travel by getting enough sleep, eating regular and staying hydrated. More on decreasing jet lag below.

Stress

Travelling can be stressful for everyone. Relaxation techniques will decrease your likelihood of a seizure from stress. Find an airport with massage facilities, listen to gentle music or read a good book.

Smartphone meditation apps like Headspace are handy when you’re on the go. Take five minutes and sit through a guided meditation or play some soothing music while you quiet your mind. Healthline has a handy list of the top meditation apps of 2018.

Medications and time zones

When travelling and changing time zones, make sure you continue to take your medicines on time. For example, if you take your medications morning and night in the UK, then discuss with the doctor about a new schedule. Use a drug wallet or pillbox that has a section for each day of the week to help you monitor your usage.

Download the free Epilepsy Society smartphone app for medication reminders, first aid advice and recovery guide.

Drinking water

Check that drinking water is safe in the country you're visiting, as even brushing your teeth in contaminated water can cause stomach problems like vomiting and diarrhoea. Gastric sickness can reduce the absorption of your epilepsy medication and cause seizures.

Choosing a holiday destination

Where you decide to go on holiday will be affected by the severity of your epilepsy. So, before you make a decision, there are lots of things to consider including:

Time of year

Consider the best time of year to travel. Hot climates in some countries could cause fatigue and seizures. Travelling in off-peak months (between November and March) can mean slightly cheaper prices, quieter resorts and cooler climates.

Accommodation

Does the hotel room have a balcony that could be dangerous during a seizure? Do you have to climb stairs or are lifts available? Are the right storage facilities available at your accommodation?

Anti-epileptic drugs (AEDs) are the most commonly used treatment for epilepsy. They help control seizures in about 70% of people. Some AEDs come in different forms including tablets, liquids, syrups, sprinkles and granules (which can be added to food).

AEDs need to be kept in a cool, dry place (not refrigerated) or they will not work and put you at risk. Always read the manufacturer’s packaging and check the medication label for storage instructions and warnings.

As a rule for storing medications: avoiding extreme temperatures (both too hot and too cold), being aware of humidity or moisture, and direct exposure to sunlight and UV rays. MedPac offers specialised medicine bags which are insulated to keep your medications cool.

Time zones

It's essential that you check the local time zone of the place you're staying. It's likely that your usual medication routine will be disrupted and so a gradual change a few weeks before you travel could help you avoid unnecessary stress. Consult your GP for more advice on adapting to time zones.

Driving with epilepsy

You must be seizure free for more than two years to receive a full UK driving licence. Hire car companies abroad have strict restrictions for people with epilepsy. You are advised to check with the hire company or tour operator for details. For more advice on driving restrictions for epileptic, read this article on the Epilepsy Society website.

Vaccinations and immunisation

Depending on the country you're visiting (especially in Asia, Africa and South America), and the time of year you are travelling, you may need vaccinations and anti-malaria medication. For a full list of vaccines by country, visit the Fit to Fly page on the NHS website.

You must consult your GP before getting any vaccinations. The type of immunisations you need will depend on your medical history.

Anti-malaria vaccines

Some antimalarial drugs can cause epileptic seizures and should be avoided, but that doesn't mean you can't get vaccinated. Your GP can consult you on the best anti-malaria medication to take.

Approved anti-malaria vaccines

• Proguanil (Paludrine®)
• Malarone
• Dxycycline (Vibramycin)

Unsafe anti-malaria vaccines

• chloroquine (contained in Avloclor® and Nivaquine®)
• Mefloquine (Lariam®).

Anti-malarial medications are not always 100% effective. You should take precautions to avoid being bitten by a mosquito.

• Wear long-sleeved clothing and trousers when outdoors
• Light colours are less attractive to mosquitoes
• Use insect repellents
• Mosquito nets provide the best protection if you are sleeping in an unconditioned room

Visit the NHS website for more information on anti-malaria vaccines.

Vaccines can cause a short rise in body temperature. Increases in body temperature can trigger febrile seizures. If you have a history of febrile seizures, then you have a slightly increased risk of having a seizure after a vaccination. This does not mean you should avoid getting vaccinated.

Always seek medical advice from your GP about which vaccines are safe for you.

Preparing for your trip

Consult your GP before you travel

Before travelling anywhere, you should visit your GP for a health check. The severity of your epilepsy will determine which precautions you need to take to have a stress-free trip.

Questions to ask your GP

Your doctor will work with you to determine if it safe for you to travel and how far you can travel. Here is a list of questions to ask your GP:

• Is it safe for me to travel?
• What precautions should I take when travelling?
• What do I do if I have a seizure on my trip?
• What are possible triggers there for my seizures?
• What happens if I miss a dose?
• Is there anything that is unsafe for me to do?
• What vaccinations are needed for my trip (this will depend on the location)?

Medical Identification

As a precaution, you should consider carrying a medical ID card. Particularly since during a seizure, you are unable to communicate or alert people about your condition. You can order a medical ID card free of charge from the Epilepsy Action website.

Take an extra supply of medication for your trip. Usually enough for your holiday plus an extra week. And never put them in your checked-in luggage, if your case is lost or stolen, you’ll lose all your medication. Always store it in your carry-on.

Misuse of Drugs laws

The Misuse of drugs laws prohibits you from taking some epilepsy medicines out of the UK. You must have a letter from your doctor if you are travelling with a controlled medicine, the list includes:

• Buccal midazolam
• Clobazam
• Clonazepam
• Diazepam
• Phenobarbital/phenobarbitone

The letter from your doctor should include the following. Note that you may be charged for this letter.

• Your name
• What countries you’re going to and when
• A list of your medicine, including how much you have, doses and the strength
• The signature of the person who prescribed your medicine

Visit the Home Office website for more information on the Misuse of Drugs law and controlled medicine.

You will need a personal licence If you are travelling for more than three months or if you are taking more than three months’ supply of medicine on holiday.

A personal license allows you to take controlled medicine out of the UK and bring it back on your return. Download the personal licence application form from the government website.

Medical Identification

As a precaution, you should consider carrying a medical ID card. Particularly since during a seizure, you are unable to communicate or alert people about your condition. You can order a medical ID card free of charge from the Epilepsy Action website.

Identity jewellery (also known as an epilepsy bracelet) is an instant way for others to recognise that you have epilepsy. Unlike medical ID cards buried in your wallet or purse, identity jewellery is visible to everyone. Here's a list of identity jewellery suppliers.

Free travel for people with epilepsy

Grants from charities and government organisations are available for people with epilepsy, and the people who care for them. Money which can be put towards the cost of a much needed holiday abroad. You can search for charity funded grants on the Turn2Us website.

Pham (Physically Handicapped and Able Bodied)

Phab provides exciting Inclusive Living Experience Residential Projects for around 115 children and young people with disabilities, including children with epilepsy, at fully accessible outdoor activity centres in the Lake District and New Forest. Phab does all it can to make these projects affordable for everyone and, bursaries are available for low-income families.

Grants for carers

Carers Trust currently has a grant fund open for individual adult carers, aged 16 and above. If you are a carer for someone living with epilepsy, you could be eligible for a grant of up to £300 from the Carers Trust. Grants can be used however you like, for example, to fund a holiday or pay for travel expenses.

Government and local councils

Local government and welfare schemes provide grants and loans for people with epilepsy. Contact your local council to find out what help you can get in your area or visit gov.uk.

Family Fund Grant

If you have a child living with epilepsy, you might be eligible for a grant from the Family Fund. The Family Fund charity provides grants towards the cost of holidays for families on a low income who are caring for a child with a severe disability or illness. Download the Family Fund brochure and application form. One application per household.

Epilepsy and travel insurance

Despite there being nearly 500,000 people with epilepsy in the UK, finding travel insurance is complicated, but it shouldn’t stop you from booking that needed holiday abroad.

How to arrange travel insurance

Our free epilepsy screening questionnaire will take the stress out of searching for suitable travel insurance. Just enter your details, answer the questions relevant to your condition and we’ll do the rest. Your answers allow us to list suitable insurance options that cover epilepsy, which means we’ll do the searching for you.

Apply for an EHIC medical card

Before travelling, make sure you own a European Health Insurance Card (EHIC card). The EHIC card protects you from expensive medical bills and may allow you to receive free or reduced-cost health care when you are in Europe.

Visit our EHIC card page and find out more about the card, including how to apply and a comprehensive list of countries it’s accepted in, and the circumstances it covers.

Flying with epilepsy

Having epilepsy does not usually prevent you from flying, but if your seizures are triggered by jet lag, dehydration, excitement or anxiety, you should inform the airline or the person you are travelling with.

Is it safe to fly with epilepsy?

Some airlines, like British Airways, train their cabin crew in advanced first aid which includes what to do if a passenger has a seizure on board. Cabin crews on board most airlines have access to 24-hour medical assistance from healthcare professionals.

If you are in any doubt, then see your GP about your health before booking your holiday or before your departure.

Can flying cause epileptic seizures?

According to the Epilepsy Foundation, there is no medical evidence that air travel increases the risk of seizures or adversely affects people with epilepsy. However, if excitement or tiredness trigger your symptoms, it’s important that you prepare for flying by:

• Getting enough sleep
• Eating and drinking regularly
• Listening to soothing music
• Arrive at the airport ahead of time

Flying after a tonic-clonic seizure

If you have had a tonic-clonic seizure (loss of consciousness, still muscles and jerkin) less than 24 hours before you are due to fly you will be refused by the airline. Most airlines follow the rules set out by of IATA (International Air Travel Association) which states that passengers must be seizure-free 24 hours before travelling by air.

If you have had a seizure 24 hours before your flight, you will need clearance to fly. A signed doctor's note explaining your medical history and that you have been approved to travel by your doctor. More information on getting medical clearance on the Civil Aviation Authority website.

Preparing for your flight

Flying is not usually a problem for people with epilepsy, but there are things you can do to make your flight more comfortable and stress-free.

• Alert the cabin staff you have epilepsy, just in case you have a seizure
• Make sure you have your medical ID card or are wearing medical identity jewellery
• Carry all your medication in your cabin luggage
• Book an aisle seat so that it's easier for you to move around
• Alert security staff about your vagus nerve stimulation (VNS) device. It's possible the VNS device could set off the security alarms.

The VNS is a pacemaker-like device that is inserted under the skin of your chest. The VNS works by sending electrical impulses to your brain through a nerve in your neck called the vagus nerve. The aim is to reduce the number of seizures you have and make them less severe.

Only people with severe epilepsy are eligible for VNS. Find out more on the VNS therapy website.

It is recommended that people with VNS should walk through the security scanner at the airport at a steady pace, and remain at least 40 centimetres from the security equipment whenever possible.

Travelling with children with epilepsy

It is usually safe for children with epilepsy to go on holiday. Follow these precautions for safe travel.

• Make sure your child is well rested before travel.
• Keep your child hydrated, especially when travelling in hot climates.
• Help your child to adjust to a new time zone by encouraging them to take a nap. Tiredness can cause seizures.
• Ensure your child is wearing an epilepsy bracelet or another form of identity jewellery.
• Note down the phone numbers of experts or clinics in your holiday location.
• See the above section on ‘preparing your medication’ for your child.

When not to travel with epilepsy

Travelling with epilepsy is not necessarily a problem, but careful planning is needed to reduce seizures. If stress or jet-lag triggers your seizures, then it is essential to remain calm and relaxed. Flying can be particularly stressful, especially long-haul flights.

If you have had a seizure less than 24 hours before travelling by air, you will need medical clearance, which is usually a signed letter from your doctor.

Enjoy your holiday

With careful planning and attention to detail, people with epilepsy can enjoy a relaxing holiday abroad. So, the next time you’re thinking about planning a trip, read this article before you go. Know someone who’s travelling with epilepsy? Bookmark this article or send them a link.