Travelling with Epilepsy – Practical Advice and Tips

Travelling with Epilepsy can be daunting. Hell, life in general with Epilepsy can feel daunting, especially if you are newly diagnosed. But as with many chronic health problems, if they are managed well, there is NO reason why you can’t live your life exactly the way you had planned it, pre-diagnosis. So if you want to travel with Epilepsy, then you should absolutely do it.

Of course, I’m not encouraging anyone to be reckless. If your Epilepsy is not yet well-controlled, you may need to press pause on your travel plans until you are on the right treatment regime, your symptoms are stable and you are used to managing them.

That said, as both a travel writer and a GP doctor, I’m passionate about showing everyone how they can travel more no matter what’s holding them back. Finances, annual leave, lack of travel companion or a chronic health problem… Therefore, this is part of a larger series of articles about travel health with other articles like Travelling with Diabetes, Travelling with Back Pain and many more to come.

In this article, I will be offering tips for travelling with Epilepsy based upon my medical experience. I will also be interviewing Steph, an epileptic who loves to travel. She offers up some great practical tips for travelling with Epilepsy based on her personal experience.

But first, for those who may not have Epilepsy but are planning to travel with someone who does, let’s delve into what Epilepsy is and how it can affect travel plans.

Please remember, whilst I am a doctor, I am not YOUR doctor. This article is for general advice only. For more tailored advice, see your own doctor or Epilepsy team.

What you can expect from this article…

  • 1 What is Epilepsy?
  • 2 How can you help your travel companion who has Epilepsy?
    • 2.1 First Aid for Seizures
  • 3 Practical Tips for Travelling with Epilepsy
    • 3.1 Travel tips for flying with Epilepsy
    • 3.2 Tips for Managing your Epilepsy medications abroad
    • 3.3 How to avoid Seizures abroad when you are travelling with Epilepsy
    • 3.4 Taking Anti-Malarial Drugs when you have Epilepsy
    • 3.5 What if you don’t have a travel buddy?
  • 4 Interview with Stephanie, an Epileptic who Travels
    • 4.1 Life with Epilepsy
    • 4.2 Travelling with Epilepsy
  • 5 Your Epilepsy Travel Check List

What is Epilepsy?

Epilepsy is a disorder of the brain which makes people likely to have seizures triggered by abnormal brain activity.

A person does not necessarily have Epilepsy just because they’ve had a seizure as seizures can be caused by many things. But a person with Epilepsy is considered to have more seizures again.

Sometimes Epilepsy is caused by damage to the brain, for example, a head injury or infection. But for many people, their Epilepsy is unexplained.

Seizures can vary considerably. Some people have vacant seizures where their eyes may glaze over and they may do repetitive movements like lip-smacking. Others may have full-blown tonic-clonic seizures where they lose consciousness and will jerk uncontrollably. Some people will have many seizures a day, others may be seizure-free for many years especially if they are on medication.

For many people, this is a lifelong condition. It affects 1 in 100 people s is more common than you may realise.

With sensible precautions and the correct management plan, many people live a very normal life. For many, this will be seizure-free on the right medication regime.

How can you help your travel companion who has Epilepsy?

If you are travelling with someone who has Epilepsy, there are a few things you can do to help. But if you are unsure about what you should be doing, it’s best to ask them directly.

They may want to split their medication across both of you hand luggage items to make sure they have a backup if their bag got stolen or lost.

It’s easy to forget your usual medication regime when you’re travelling in a different timezone. If your friend doesn’t mind, then gentle reminders may be useful for them.

As fatigue often triggers seizures, try to be understanding if your travel friend needs to take things a bit slower or wants an early night.

Try to make yourself familiar with first aid for seizures so you can help if your friend becomes unwell.

First Aid for Seizures

Seizures come in all shapes and sizes but if your travel companion has an episode where they lose consciousness, go rigid and start to shake (called a tonic-clonic seizure,) then here are some tips for how you can help them;

Firstly ease them onto the floor and remove any hazards such as things they may hit their head on, loosen anything tight around their neck and try to get them away from any bodies of water.

Turn them gently onto one side to help them breathe. Put something soft under their head to prevent them from sustaining a head injury.

Do not try to hold them down or restrict their movement.

Stay with them and time their seizure. If it continues over 5 minutes, call an ambulance. Make sure you are aware of the number to call in the country that you are visiting.

If they have another seizure soon after the first one or if they injure themselves during the seizure, these are other reasons you will need to call an ambulance.

If someone has regular seizures and is known to have Epilepsy, they do not need to go to the hospital every time. However, if it is their first seizure then they must seek medical help.

Practical Tips for Travelling with Epilepsy

Travel tips for flying with Epilepsy

  • Fatigue often triggers seizures so try to factor in plenty of rest on flights. You may want to book daytime flights to avoid sleep deprivation or consider taking a comfy travel pillow and noise-blocking earplugs to help you sleep on flights.
  • If you have regular seizures, you may want to consider telling an air steward about your Epilepsy.
  • If you have a vagal nerve stimulator in situ, be aware these can set off metal detectors in airports so let someone at security know in advance.

Tips for Managing your Epilepsy medications abroad

  • Make sure you tell someone that you Epileptic and what medications you are on if you need any medical treatment abroad, even if it doesn’t seem relevant. Some medications interact with Epilepsy meds making them less effective and lowering your seizure threshold.
  • Take more medication than you need. Preferably at least twice your normal quantity of medications. Then split these between your hand luggage and hold luggage or between you and your travel buddies hand luggage so if the worst happens, and they’re stolen, you have a backup!
  • Speak to your Epilepsy nurse or your primary care practice nurse before you go. They may be able to give you additional tips based on your own situation/medication regime.
  • If any of your medications are in liquid form, there’s a good chance they will need to be kept cool which can be challenging in very hot destinations. Frio bags are a great way to keep your meds cool in transit. You just soak them in water and they stay cool all day!
  • Learn the generic names of your medications. Most meds have 2 names. One is a generic name which is the one most doctors use. The other is a trade name often assigned by a drug company. When you are abroad, if you need more medication, it will be easier to find if you know the generic name. If you’re unsure what the generic name is, speak to your pharmacy.
  • If there is a time difference abroad, you may need to very gradually change the times you take them, trying to space them out as similarly as you can to your usual regime. Set alarms to help you remember to take them.

Travelling with controlled drugs for Epilepsy

There are certain medications used in the management of Epilepsy which are controlled drugs. You may need to fill out some paperwork for a license if you are carrying more than 3 months supply of them in and out of the UK. You should also check what the rules are in countries which you are visiting. Unfortunately, there will be some countries where you will not be permitted to enter with controlled drugs as they may be considered illegal.

The following drugs are currently considered controlled drugs;

  • Diazepam
  • Buccal midazolam
  • Clonazepam
  • Clobazam
  • Pregabalin
  • Gabapentin
  • Phenobarbitone

To comply with UK governmental rules; If you are carrying any controlled drugs, you will need a copy of your prescription and a letter from your G.P doctor proving you need to take these medications for Epilepsy. The letter should state your name, the countries you are visiting and dates of travel, the medications you have including the quantities and doses and it must be signed by the person who gives you the script.

Apply for a license to carry 3 months controlled drugs here

How to avoid Seizures abroad when you are travelling with Epilepsy

  • Know your triggers. For some people, it’ll be fatigue, others, flashing lights. If you understand your triggers, you can make efforts to avoid them like planning rest days to avoid fatigue etc.
  • It’s easy to get dehydrated when you are in hot countries, out exploring all day. Make sure you keep hydrated and take plenty of breaks.
  • Download the app Google Translate and the language of the country you are visiting. This app allows you to communicate even if you can’t speak the lingo so you can always tell someone you are Epileptic for example if you get sick or need to source more medication.
  • Where possible, try to travel with someone, especially if you have frequent seizures. That way they can help you should you have a seizure whilst out and about.
  • Considering wearing a bracelet that identifies you as epileptic and has your next of kins contact details on, should you get sick abroad. You can get some really pretty ones these days that look like regular bracelets.
  • Remember that your seizure frequency might increase if you are at high altitude. If you are planning to visit places at high altitude, visit places at lower altitude first and slowly go higher over several days or weeks. You may want to discuss this with a travel doctor such as those at Nomads clinics.

Taking Anti-Malarial Drugs when you have Epilepsy

It’s important if you visit Malaria-pone countries, that you take medication to protect yourself. Especially as getting sick will lower your seizure threshold.

However, that said, there are various anti-malarial medications that you shouldn’t take when you have Epilepsy such as Chloroquine and Mefloquine. Atovaquone/proguanil is usually the best option and Doxycycline may be suitable for some people depending on which medications they are already taking.

Make sure you speak to a doctor before you travel and take other precautions to avoid mosquito bites such as wearing long sleeves and trousers in the evenings and applying frequent insect repellant.

For more advice about countries which you need to take antimalarials for, I recommend the Fit for Travel website which has handy malaria maps for each country! You can also read my article about why you should take Anti-malaria tablets for travel.

What if you don’t have a travel buddy?

If you don’t have a friend or family member to travel with, consider travelling on a group adventure tour. That way, you will always have people with you, should you have a seizure. You can tell your tour leader (and fellow travel companions if you wish) how to help you if you have a seizure.

I have lots of information on this website about group travel and my personal favourite company is G Adventures. You may find one of these articles useful…

  • The best group travel companies for solo travellers
  • Solo or group travel? Pros and cons reviewed.
  • G Adventures vs Intrepid Travel – which is best?

Interview with Stephanie, an Epileptic who Travels

Tell us about you and your blog?  

I am a health awareness and health & beauty blogger living with cerebral palsy and epilepsy. I’m a very independent person who likes to challenge myself with new experiences when I travel or being around a local city. I’m currently one of the co-writer of a lifestyle blog called The Girls’ Edit.

Where is your favourite place you’ve travelled so far? 

I love going to Scotland because of the food culture, royal history, and landscapes. I know it’s not far but with my epilepsy, I feel safe within Europe than going overseas.

What’s top of your travel bucket list?

I’ve already planned my travel bucket list for the next decade. I would like to travel to all the Scandinavian countries because I would love to learn about the Scandinavian monarchies and learn about the life of Hans Christian Anderson. I absolutely love fairytales and I would like to see the little mermaid statue in Denmark. 

Life with Epilepsy

When did you first get diagnosed with Epilepsy?  

I first got diagnosed when I was 16 years old. I had been discharged from hospital after nerve-transfer surgery for my right hand and I was still heavily medicated on painkillers. The next day, I woke up and during my morning routine, I just dropped onto the bathroom floor and had my first tonic-clonic seizure. I had a concussion and felt confused after my seizure attack.

How does it affect you in day-to-day life? 

Living with epilepsy is frustrating because I never know when my aura will appear. I am in semi-remission right now which means my medications are keeping me stable. I take Dilantin (Phenytoin) and Keppra (Levetiracetam) together daily.

Travelling with Epilepsy

Did you have any concerns about travelling with epilepsy before you went away?  

Luckily, I wasn’t too concerned because I was in remission since 2003. From 2003-2017, I travelled with ease because I had no aura or seizures. 

Have you struggled to get travel insurance since your diagnosis of epilepsy? Can you recommend any companies?   

I never personally had trouble with travel insurance because so far I have stayed within the EU or the UK when travelling. The NHS is always there in the UK.

Were any of your family worried about you travelling with Epilepsy? Do you have any tips for someone approaching that conversation with concerned family members?   

I am very close to my mother. She will always remind me that I need to take my medications at the right time and eat more healthy foods. She also reminds me to check where the nearest hospital is and where I could get help within a new city.

My advice would be to go to a family member that you have a good relationship with and who understands your epilepsy very well for them to help you explain. 

Is there anything different you do to prepare for travelling with Epilepsy?  

Yes. Before I travel, I need to make sure the country that I’m going to accepts my medications. Some countries don’t. If not, I need to go to my doctor’s office and get a note saying that I have epilepsy and I’m taking these medications. I need to show this to Immigration & Customs.

Do you ever find that jet lag causes you t have more seizures? How do you manage this?

 Jet-lag was never my seizure trigger. I, too, cannot sleep on plane rides, but being jet-lag has always given me stress and mood swings, but thankfully, never a full-blown seizure.

Any tips for making sure you get enough sleep on the plane?  

The only tip I can give someone is to avoid alcohol, coffee, and take a sleeping pill. 

Have you had a seizure abroad? What happened?

Fortunately not!

Do you do anything differently when you travel because of your Epilepsy?

 I will stay close to the downtown core because there are people who can help me if something goes wrong. I always carry my medication box everywhere, just in case. 

Are there any epilepsy resources or websites that you recommend for travel or living with epilepsy in general? 

Yes, the below websites are helpful;

  • BBC health
  • Epilepsy support

Thanks, Stephanie for giving us an insight into what it’s like travelling with Epilepsy! You can follow Stephanie on Twitter here.

Your Epilepsy Travel Check List

Make sure you have the following things before you go travelling with Epilepsy

  • A copy of your prescription
  • If possible, 2x the amount of required medication, split into 2 bags
  • Travel insurance.
  • A travel pillow and earplugs to help you sleep on the plane
  • An alarm set to remind you to take your medication, especially when you may be tired after a flight and more likely to forget.
  • If you use and controlled medications, you will need a letter from your GP
  • If you live in the UK and have more than 3 months supply of controlled medications you will need a license.
  • Make sure you have checked the rules regarding your type of medication in the countries you are visiting
  • Know the generic names of your medications.
  • Keep contact details for your next of kin in your purse or on your person.
  • Consider wearing a medical ID bracelet. This one is really pretty!

Hopefully having read this article, you will feel more confident about travelling with Epilepsy. Don’t let it stop you living your best life!

Read my other Travel Health articles…

  • Travelling with Diabetes
  • Travelling with back pain
  • How to deals with the travel blues
  • 10 inspiring travel health stories
  • How to avoid altitude sickness
  • Everything you need to know about Anti-malaria tablets

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