Travel advice for people with epilepsy

This information is relevant to people who live in the UK.

Brexit

On 31st December 2020 the UK left the European Union. This and the coronavirus pandemic means that laws and guidance about travel from the UK are changing all the time.

What should I do?

Check for the most up-to-date travel information on the government website.

Always get travel insurance. Be sure it covers pre-existing health conditions.

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. 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 Lamictal, your doctor should also write the generic name, lamotrigine
  • The doses and total amounts of each medicine

At the time of writing the following epilepsy medicines are controlled:

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

 If you take a controlled medicine and will be travelling for 3 months or more, or will be taking 3 months’ or more 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.

 You can find more information about travel vaccinations and anti-malaria medicine on the NHS website. 

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) See Brexit box

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.

Air travel

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. You might want to download our first aid information to help with this.

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 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. 

Further information

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 website has lots of useful information about travel health. Website: nhs.uk

If you would like to see this information with references, visit the Advice and Information references section of our website. If you are unable to access the internet, please contact our Epilepsy Action Helpline freephone on 0808 800 5050.

Code: 
F022.07

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 Epilepsy Action's information quality standards.

  • Updated February 2020
    To be reviewed April 2022

Comments: read the 6 comments or add yours

Comments

Hi, I had a first seizure last Friday the 7th of June. I am due to take my family on holiday to Mexico on the 7th July for 2 weeks. I haven't had an appointment with the 'First Fit' clinic yet but was wondering if you thought I should go ahead with the holiday? I am feeling a bit shocked at the moment and want to do the right thing.

Submitted by Ian

Hi Ian, this sounds to be a tricky situation for you to make a decision about. There are no rules that say you can’t travel if you have had a seizure or have epilepsy. However here are some things you might like to consider before you make your final decision.

If you have already taken out travel insurance you should be covered but you will need to contact your insurers to let them know this change of circumstances. They may also need medical confirmation from your doctor. If you haven’t already got travel insurance it may be worth checking this out before you make your decision. Travel insurance may be more difficult to get if you are waiting for further investigations and haven’t yet got a diagnosis.

It may also be worth checking what medical facilities would be available to you in Mexico if you had a further seizure. If you have booked with a travel agent they may be able to give you some advice. The NHS website has some helpful information about travel health and this is a link to the Government foreign travel advice for individual countries. 

Our travel section above has information about flight safety, first aid and looking after yourself if you do make the decision to travel.

I hope this information helps you to make a decision about your trip. You would be welcome to ring us at the Helpline if we can help any further.

Regards

Mags
Epilepsy Action Helpline. 

Submitted by Mags - Epilepsy...

We are soon going on a long haul flight. My husband suffers from sleep complex partial seizures roughly once a fortnight. He is sometimes incontinent afterwards whilst asleep. I suppose all I can do is carry spare clothes. When he isn’t incontinent, he walks to the toilet in a trance like state in order to urinate. Should I warn the air steward staff? My husband plays everything down- it’s me that worries!

Submitted by Jane Meikle

Hi Jane  - We can understand how you both feel about this. You don’t have to mention anything if you think you and your husband can manage during the flight. It might be possible to find some continence pads that your husband could use. These could be changed quite discreetly during the flight.

Regards

Mags

Epilepsy Action Helpline Team

Submitted by rich

Hi, I've read all the information and questions/answers but I am still confused, I have frontal lobe epilepsy or something along those lines. I don't have seizures on a frequent basis, it takes me by surprise. I take my medication as regular as clockwork. Levetiracetam and lamotrigine. I'm travelling to Gran Canaria over the Christmas period, travelling on my own. Because my seizures are irregular, do I still need to make the cabin crew aware or perhaps take a chance? I don't know what to do for the best as I feel ashamed of this illness. Many thanks. Matthew Adams

Submitted by Matthew Adams

Hi Matthew – it’s tough to know who to tell about epilepsy and it isn’t easy coping with others reactions to your epilepsy either.

In terms of your flights over Christmas if you don’t think it’s likely you’ll have a seizure you don’t have to tell the cabin staff. But if you aren’t sure  and if you might need help its best to mention it. Cabin staff are all trained in first aid. And they should be able to treat you with privacy and dignity if you give them the information they need.

You are welcome to use our first aid information or we can send or you could download one of our ID cards.

If you want to see how others have dealt with this you could put a question on our online Forum4e or through our Facebook or Instagram links. 

If you want to talk through what’s best for you you’d be welcome to call us at the Helpline. Its confidential and free to phone and the number is 0808 800 5050.

And we hope you have a safe trip and a great time in Gran Canaria.

Regards

Mags

Epilepsy Action Helpline Team.

Submitted by rich

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