A Guide to Travelling with Epilepsy

As we approach the summer, many of us begin to think about travelling and going on holiday. Having epilepsy should not prevent you from doing the same.

However, it’s crucial to take necessary precautions to ensure safety. Wherever you’re thinking of going this summer, thorough planning can really make a difference.

In this guide, we’ll provide some essential tips and advice to help you continue managing your epilepsy while travelling. We’ll mainly focus on travelling abroad, but the advice can be applied wherever you decide to go.

Before Your Trip

• Planning well for your trip is crucial in reducing stress and minimising risks. You don’t have to do this alone.

  Before booking anything, consider discussing your holiday plans with your doctor or GP. They can evaluate your health before your trip to ensure it’s safe for you to go, and they can advise you on how best to manage your epilepsy while you’re away.

  It would also be a good idea to ask your doctor to write a letter clearly explaining your condition and treatment plan. Carry this with you during your trip, it may come in useful in the case of an emergency.

• While with your doctor, discuss your medication. Make sure all your medication is up to date, and ensure you have more than enough to cover you while you’re away.

  You could also ask for a written prescription to take with you on holiday. Then, if you lose your medication while travelling, or have to stay away longer than originally planned, you’ll have a way to access more medication.

  Some medications have very specific storage instructions. Ask your doctor to advise you on the best way to store your medication during your journey, especially if you’re travelling somewhere with a different climate.

  They should also be able to advise you on how to adjust your medication timing if you’re travelling somewhere in a different time zone.

• On the topic of medication, different countries have their own rules about which medicines you are allowed to take into the country.

  They may also have a limit on how much you can take with you. So, while choosing your holiday destination, think about whether there are rules or paperwork needed for carrying your medication into another country.

  You can use the government’s Foreign Travel Advice page to find healthcare information specific to each country.

• If you haven’t already, consider applying for a Global Health Insurance Card (GHIC)*. This card provides access to state healthcare abroad for emergency treatment, A&E visits, and routine care for long-term or pre-existing conditions.

• Many airlines offer extra support for passengers with epilepsy, including special assistance before and during the flight. It’s a good idea to reach out to the airline you plan to travel with to learn how they can assist you during your journey.

  You could also ask about their policies regarding medication; most airlines suggest keeping your medication in its original packaging and storing it in your hand luggage to ensure it doesn’t get lost.

  

*The UK GHIC has replaced the existing European Health Insurance Card (EHIC). If you already have an EHIC, you can keep using it until it runs out. After it expires, you’ll need to get a UK GHIC instead.

Where should you go?

There is a lot to consider when choosing your holiday destination. Of course, you want to choose a place you know you’ll enjoy. But you should take into account your seizure triggers.

For example, if tiredness is a common trigger for you, you’ll need to be wary of jet lag. This may mean that you’ll need to avoid long-haul flights.

As another example, heat can be a common seizure trigger. Consider the temperature of the country you’re visiting. This doesn’t mean you have to avoid nice weather altogether; just be ready to take extra precautions to manage your epilepsy in the heat. You can find some tips for doing so in our blog, Hot Weather and Epilepsy: 8 Tips for Staying Cool and Safe.

You should also consider whether the place you plan on visiting has easy access to healthcare. Look into nearby hospitals and pharmacies to be prepared for any emergencies, and familiarise yourself with some basic phrases in the local language that could be useful in emergencies.

Consider the local transport options; are they easily accessible in the case of an emergency?

During your Trip

Hopefully, by now you’ve planned well for your trip and you’ve chosen your destination carefully. What can you do now to minimise the risks during your trip?

At the Airport

• If your airline allows it, keep your medication and any important documents in your carry-on bag so you can easily reach them when needed. There’s also a lower chance of them getting lost. Sometimes, checked bags can get lost, delayed, or damaged.
  

• If you have a vagus nerve stimulation (VNS) device, let the airport security staff know about it. Although security scanners and metal detectors generally don’t affect VNS devices, it’s recommended to walk through scanners steadily, avoid lingering, and stay at least 40 centimetres away.

  If this isn’t possible, you can request a pat-down instead. Airport staff should avoid using handheld metal detectors directly over the VNS.

• Airports can be quite stressful and may potentially trigger seizures. To help manage stress both before and during your trip, consider incorporating relaxation techniques into your daily routine.

  Simple practices such as meditation and slow, focused breathing can help. You might also consider holistic therapies designed to reduce stress, like herbal medicine or homoeopathy. However, be sure to consult your doctor before trying anything new.

• If you have an early morning or night flight, prioritise getting enough sleep and staying well-rested before your trip.

On Holiday

Finally, after all that planning, now is your time to relax and enjoy your time away. However, there are still a few more things you can do to keep risks to a minimum.

• To stay safe, avoid situations that could be risky, such as swimming alone or participating in activities with a risk of injury.
• Make sure the people you’re with are aware of your condition and know how to assist you in the event of a seizure.
• Limit your time in the sun and avoid excessive heat; try to plan your activities for the early morning or late afternoon and evening to avoid the hottest part of the day.
• Stick to your schedule. Set reminders to help you remember to take your medication regularly, wherever you are. Eating and drinking at your usual times can also help lower the risk of a seizure.
• Consider using seizure monitoring technology. Wearable seizure monitors and alarms can be useful at all times, but especially while you’re in an unfamiliar area, as many of them have features like GPS tracking and can call for emergency assistance.
• Always carry an Epilepsy or medical ID with you. These IDs are available in different formats, such as cards and bracelets, or you can get a digital version for your phone. These cards provide important information that helps medical staff take quick and correct action if you have a seizure. You can order an epilepsy ID card free of charge by contacting Epilepsy Action.

With a bit of thoughtful planning, someone with epilepsy can go travelling without missing out on fun experiences. Taking the necessary steps to ensure safety can promote your confidence to explore new destinations and embrace the joy of travelling.