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Travel advice for people with epilepsy

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
  • Clobazam
  • Clonazepam
  • Diazepam
  • Phenobarbital/phenobarbitone

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

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

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.

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.

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.

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

References

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.

Code: 
F022.04

Our thanks

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.

Disclosure

Lesley McCoy and Elaine Lincoln have no conflict of interest.

This information has been produced under the terms of The Information Standard.

  • Updated April 2016
    To be reviewed April 2019

Comments: read the 6 comments or add yours

Comments

really helpful, thanks

Submitted by Rick Cooper on

having taken epilim for over 30 years and have been free of any episodes or fits for that time and for the past 10 years done a significant amount of foreign travel 20+ countries and over 100 flights.
The advice given above is very similar to my experience. I have used the same travel insurance company which I found online all the years and they ask about 6-8 questions relevant to the illness and provided there is not another medical condition example asthma. they have never queried it or asked for proof.

Regarding long haul flights when flying East - West (forward hours) try and get a night flight if you are doing more than 3-4 hours as you naturally sleep through and for 24 hours before you fly cut out caffiene in coffee, tea or pop it means you can sleep a lot deeper and better. I have found this on US to UK and UK to Japan flights in the past.
As for the notifying the aircrew / airline of illness with my airline I use I am not only a L2 frequent flyer having clocked up over 150,000 miles but as a norm seated in the emergency row. I know that if you have had seizures recently then this might not be possible but for someone who does have to declare it and carry the tablets which would give this away and needs to take them during flights sometimes I have found the "main" airlines helpful only the small near charter sized ones in the US can be a little funny with the tablets being carried on board.

I would if you are unsure of the country you are in put a card in both your wallet / purse and also on your phone if possible indicating your tablets and dosage plus one I found in Japan and again in Canada get your blood type done and that you don't drink alcohol if this is the case as that written by the information should help in speeding up the diagnosis as sometimes I have seen being drunk mistaken for fitting and the other way round during my work around the world.

have many safe trips everyone.

Submitted by Craig T on

I am wondering about the advisability of a 15 year-old epileptic travelling to Vietnam & Cambodia on a school history trip for a couple of weeks. Obviously, the health care available is very rudimentary. I am also concerned about the tablets not being absorbed in the event of vomiting/diarrhoea, which is common in travellers to those places.

Submitted by Mary03 on

Hi Mary03

It’s very sensible to think about these things and make sure someone is as safe as possible, particularly travelling to far-flung places. Presumably the school will be doing or has done a risk assessment for the person concerned and indeed for any other young person with a medical condition?

With regard to what someone should do about their tablets in the case of vomiting and/or diarrhoea it’s a good idea to get advice in advance from their family doctor, epilepsy nurse or epilepsy specialist. You can’t really generalise because it depends on what tablets they are taking for their epilepsy, any other tablets they may be taking and their general health.

Best wishes.

Shelley
Epilepsy Action Advice and Information Team

Submitted by Shelley, Epilep... on

Is it fine to go on a cruise that last 12 days if you have epilepsy?

Submitted by James on

Hi James

We believe the cruise companies will have guidelines for medical conditions.  This information should be available from the cruise company.

It could be that where you wish to go and your seizure control may need to be taken into account.

Regards
Diane
Epilepsy Action Advice and Information Team

Submitted by Diane, Epilepsy... on