Travelling With Epilepsy

Hey! I’m Tommy. I’m 29 and from Birmingham. Wow, that sounded like a really poor dating profile. Anyway, the team over at Medical Travel Compared asked me to be a guest blogger for Purple Day.

"Why have they asked you, Tommy?" I hear you ask. “Is it your charisma? Wittiness? Or golden ginger locks?”. No, it’s because I’m an expert in epilepsy, not from a medical stance, but I’ve lived with it all my life. Even in my sleep - impressive huh?

I guess telling you about my epilepsy first is an excellent place to start. I was born with epilepsy, I always get people asking “What’s it like?” but I haven’t known any different? So it’s normal, I guess. Of course, there are many aspects of having epilepsy that isn’t so normal, things like forgetfulness, staring into space for no apparent reason, oh yeah - and the seizures.

Compared to those without epilepsy, travelling can also be a very different and much more stressful experience! Which really doesn’t help when one of your triggers is…stress. I recently went away on holiday to Stockholm with my girlfriend and some friends, and it was a great holiday.

Now before we could see some beautiful sites and have an amazing time, we first had to get there. It’s worth mentioning at this point that I have a fear of flying, or more the plane suddenly not flying. So you can probably imagine what I’m like in the days leading up to the holiday. 

Preparing for my holiday

Preparing for a holiday in general can be rather stressful, but it does have an extra layer of complexity when travelling with epilepsy. For example, instead of worrying about turning the plug sockets off (all except the fridge, we trust the fridge), you’re making sure you’ve packed your Epilim (Sodium Valproate), or checking your travel insurance actually has your epilepsy covered.

Once I’d packed my Epilim and checked my travel insurance documents, the preparation side of things is pretty stress-free, you can buy anything else you’re missing over there right? That’s my stance on it anyway.

One of the challenges I had with my trip to Stockholm was that our friends booked the flights, and they booked a very early flight, the first flight of the day in fact. This meant we would only have 4 hours of sleep before we had to get up and make our way to the airport, and lack of sleep is also not great when it comes to epilepsy, it can increase the risk of a seizure (in my experience at least) by quite a lot. Personally I would rather spend a little bit extra on later flights to make sure I get a good night's sleep, and enough time to have a decent meal before flying.

So the day has come, and we’re on our way to the airport. Because I’m not a great flyer, my anxiety is doing overtime. With every hint of a headache I get, I think I’m about to have a seizure (even though I only have nocturnal seizures). But I reassure myself that I’ve taken my Epilim, and everything is going to be fine. 

Arriving at the airport and going through security I always find a little amusing. Now others who take Epilim will relate to this next piece. But basically, the tablets that I take smell like marijuana, I can’t explain why, they just do, and you can find many Reddit threads about it too.

You can now picture me at the airport, sweating because I’m nervous about the flight, carrying a suspicious bag of foil that smells to the high heavens of weed. And if that security guy with the dog decides to stop you, you’ve got to explain that the suspicious smelling medication is for an illness that nobody can see and if he asks what happens if I don’t take the medication, I can’t tell him because I can never remember my seizures!

Thankfully, the sniffer dog didn’t collar me this time, so I headed straight through security and eventually boarded the flight. I like to let the cabin crew know that I have epilepsy. I’ve only recently started doing this, but it really does help. They’ll come and check on you every so often to make sure that everything is ok and if they can do anything to help.

99% of the time, you won’t need them, everything will be fine. But it’s always nice to know that if your body does decide to choose this exact moment to have a seizure, there is going to be someone on hand who’s experienced and trained to look after you.

My top tips

When actually on holiday, I try and be as sensible as possible when it comes to my epilepsy, without being too boring of course. Nobody likes a vanilla ice cream with a side of ready-salted kinda guy. Stockholm wasn’t too bad, for example, the weather conditions are pretty much like the UK.

Whereas ‘hot beach’ holidays can be slightly riskier, in my experience overheating/dehydration can also lead to seizures. A lot of it however, is knowing yourself, and your epilepsy. 

Everyone deserves to go on holiday, regardless of what medical conditions they have. And that includes epileptics. It’s just about covering all the angles, knowing your body, and treating it exactly as you would at home. Theoretically, as long as you don’t change your daily routine too much, i.e. meal times, sleep pattern, and times you take your medication - you’re no more likely to seizure on holiday than you are at home.

So I guess if I had to do one of those cheesy blog endings where I sum up some takeaways for you, they would be something like this:

• Plan ahead - ensure you’ve packed medication for each morning and night, and take spares too, just in case.
• Cover the angles - get insurance, the last thing you want is to spend your holiday fund on Epilim, it isn’t cheap. And you’ve got souvenir shopping to do!
• Tell the Flight Crew about your epilepsy - the more people know the better, but chances are you’ll be absolutely fine.
• If it’s a hot holiday - hydrate, hydrate and hydrate some more.
• Account for the time difference - yes your holiday destination might be 4 hours ahead, but your epilepsy doesn’t care about that. Be prepared for your sleep pattern to change, and your meal times. But if you feel a bit strange, just have a nap. It’s better to take 1 hour out of your day than to be ill for the rest of it.
• Relax - The worst thing you can do is stress yourself out. Enjoy yourself, and remember you know your epilepsy better than anyone else. Make good and safe decisions. You can always come back to the holiday destination again, but your health should always come first.

If you do have any more questions about my experience with epilepsy, or just fancy connecting, feel free to follow me @_TommyMason on Twitter. I mostly talk about design, but it’s always great to connect.