This information is relevant to people who live in the UK.
If you want to travel, whether it’s for work or leisure, having epilepsy should not stop you. Planning ahead before you travel can help you stay well during your trip, especially if you are travelling outside the UK. Here are some tips to help you prepare.
Preparing to travel
1. Get enough epilepsy medicine to last more than the length of your trip
Try to take more medicine than you will need, in case your medicine is lost or stolen, or you are delayed in getting home.
If you need extra medicine to cover the time you are away, speak to your family doctor. They may be able to write you a prescription for enough medicine to cover the time you are away.
If you are going away for a long time, your doctor might not be allowed to prescribe enough medicine to cover your whole trip. If this is the case, you will need to find out how to get supplies of your epilepsy medicines when you are outside the UK. This information could also be useful if your medicine is lost or stolen while you are away.
2. Check what paperwork you need for travelling with your medicine
When travelling outside the UK with prescription medicine, you should keep it in its original packaging and carry a copy of your prescription. This is to avoid problems at customs.
Some prescription medicines are controlled under the Misuse of Drugs laws. There are extra legal controls for taking these medicines in and out of the UK. The Home Office says you should carry a letter from your doctor if you are travelling with a controlled medicine. At the time of writing the following epilepsy medicines are controlled:
- Buccal midazolam
Your doctor may charge for this letter. The letter should include:
- Your name
- Your travel itinerary
- The names - including generic names - of your prescription medicines. For example, if you take the branded medicine Frisium, your doctor should also write the generic name, clobazam
- The doses and total amounts of each medicine
If you take a controlled medicine and will be travelling for more than 3 months, or will be taking more than 3 months’ supply, you will need to get a personal licence. This is a document which allows you to take controlled medicine out of the UK and bring it back on your return. The government website has more information about personal licences.
3. Think about how you will store your epilepsy medicine
Some epilepsy medicines need to be kept in a cool dry place. Your pharmacist can give you advice about storing your medicine while you are travelling and while you are away.
4. Check if there is a time difference where you are going
You might find that your usual time for taking your epilepsy medicine would fall at a difficult time, such as the middle of the night. In this case, you may be able to gradually change the times that you take your medicine, in the weeks before you travel. Your doctor or pharmacist will be able to give you more advice about this.
5. Check if you need vaccinations and/or anti-malaria medicine
Most vaccines are safe for people with epilepsy, but some anti-malaria medicines should be avoided. Public Health England has published the following advice on anti-malaria medicine for people with epilepsy:
- Chloroquine: unsuitable for people with epilepsy
- Mefloquine: unsuitable for people with epilepsy
- Atovaquone/proguanil: can be used by people with epilepsy
- Doxycycline: can be used, but the way this medicine works may be affected by phenytoin, carbamazepine and barbiturates. If you take one of these medicines your doctor might recommend a different anti-malaria medicine, or they might increase the dose of doxycycline
6. Get travel insurance
The cost of medical care and treatment can be very expensive outside the UK. Make sure that your insurance policy would cover any incidents that are related to your epilepsy.
Epilepsy Action works with Insurancewith to offer a travel insurance policy for people with epilepsy, which includes cover for epilepsy related incidents. As with any travel insurance, cover is not guaranteed, because the insurance company will look at your level of risk on an individual basis.
Tel: 0203 829 3875. Quote EPA.
7. Get a European Health Insurance Card (EHIC)
The EHIC card allows you to access state-provided healthcare in other European Economic Area (EEA) countries and Switzerland. The EHIC does not cover everything that travel insurance does, so it’s important to have both. EHIC cards are free of charge. You can apply online through the official EHIC website. Beware of using unofficial websites, which may charge you. Alternatively, you can apply by phone on 0300 330 1350.
8. If you are flying, check if you need medical clearance
It’s a good idea to check the individual policy of the airline you are flying with in advance. Many airlines follow the International Air Travel Association (IATA) medical guidelines. The IATA guidelines say that if you have had a tonic-clonic seizure less than 24 hours before your flight, you will need medical clearance to be allowed to fly. If your seizures are generally well controlled, you should not usually need medical clearance.
9. Consider wearing identity jewellery or carrying an epilepsy ID card
Wearing identity jewellery or carrying an epilepsy ID card will let people know what is happening if you have a seizure while you are away. Epilepsy Action has details of companies that supply identity jewellery. You can order an epilepsy ID card free of charge from the Epilepsy Action online shop or by contacting Epilepsy Action.
There is no evidence to suggest that flying is harmful for people with epilepsy. Here are some tips for travelling by plane. We have focused on air travel as this is what we are most frequently asked about, but many of the tips would also apply to other types of travel.
1. If you have frequent seizures, consider telling the cabin staff about your epilepsy
If you think you might have a seizure on the plane, it can be helpful to tell the cabin staff about your epilepsy. That way, they will know what is happening if you have a seizure, and will be able to help you.
2. Tell airport security staff if you have a vagus nerve stimulation (VNS) device
Airport security scanners should not affect your VNS, but it’s possible the VNS device could set off the metal detector alarm. So it’s a good idea to let the staff at the scanner know about your VNS.
3. Try to get your usual amount of sleep
Lack of sleep or feeling tired can increase some people’s risk of having a seizure. If you are travelling across several time zones you could be affected by jet lag. The NHS choices website has more information about dealing with jet lag.
4. Set a reminder to take your epilepsy medicines at your usual time
If you forget to take your epilepsy medicine, this could make you more likely to have a seizure.
5. Carry your medicine in your hand luggage
Carry your medicine in your hand luggage with a copy of your prescription (and your letter from the doctor if you have one). You should keep the medicine in its original packaging. It’s also a good idea to pack a spare supply in your hold luggage, along with another copy of your prescription, in case you lose your hand luggage.
At the time of writing, UK airport hand luggage restrictions allow you to carry essential medicine in your hand luggage, including liquid medicine. You will need to show airport staff evidence that the medicine has been prescribed for you, such as a copy of your prescription.
First aid for seizures in different languages
Epilepsy Action has information about seizure first aid in French, German and Spanish.
The International Bureau for Epilepsy has published The Traveller’s Handbook for people with epilepsy. This includes first aid instructions and a selection of phrases you may find helpful, in a number of different languages.
Travel health information
The NHS choices website has lots of useful information about travel health.
If you would like to see this information with references, visit the Advice and Information references section of our website or contact the Epilepsy Action Helpline on 0808 800 5050.
Epilepsy Action would like to thank Lesley McCoy and Elaine Lincoln, Epilepsy Nurse Specialists, County Durham and Darlington NHS Foundation Trust, for reviewing this information.
Lesley McCoy and Elaine Lincoln have no conflict of interest.
This information has been produced under the terms of The Information Standard.
- Updated April 2016To be reviewed April 2019