09-09-2015 | Travelling with Epilepsy – Sun Sea and Seizures

09 September 2015
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We are deligthed to publish the following article fro Sarh's Blog

Travelling with Epilepsy – Sun Sea and Seizures

By Sarah Holden – check out www.destinationanywhere.org

I've had epilepsy for five years now. It causes memory blackouts – sometimes I'm missing entire days. I can watch a movie and watch it again the next day only to remember half way through that I've already seen it, if I remember at all.

I found out I had epilepsy just after my 19th birthday. My friend came to visit me so we could celebrate but, due to untreated seizures, I had forgotten.

Two weeks later, I called her asking why she hadn't come to visit, she must have thought I was crazy and told me to check the pictures on my Facebook. I checked and sure enough there was a photo of both of us taking silly pictures while having birthday lunch in my favourite restaurant. That week she made her way back to my house, helped me pack my things and off I went to the hospital where I would spend the majority of that year.

It took four years to find a medication that would have much of an effect on my seizures. At one stage I was having up to twenty a day. I'm grateful that I have finally found one that works pretty well and now I only occasionally get partial seizures.

What happens when I have a partial seizure?

I'm one of the lucky ones, I get a warning beforehand and have time to put myself in a safe position and let someone know what's happening. It's always the same; I get the smell of chicken, get déjà vu, feel a euphoric rush through my body followed by a sickness that feels like it's dragging my consciousness into the ground and then I trip out for a few minutes. During this time I feel like I'm out of my own body and can control senses that I didn't know I had before. I also visualise talking to people and have a sense that I know what the meaning of life is about. Strange, I know, but that's what happens!

Despite all of this I have never let my epilepsy hold me back. I'm currently in Brazil where I have spent the last five months soaking up the sunshine. Next month I'm beginning my backpacking adventure around the rest of South America, first stop; Argentina.

Of course I take precautions. I travel with my boyfriend who knows exactly what to do when I get a seizure, I don't go

into the sea alone, I try not to take long bus journeys during the day because the sun flickering through the trees can act as a trigger and I always make sure to have enough medication with me.

Sometimes the fear of having a seizure is worse than the seizure itself but epilepsy shouldn't hold you back in life. In fact, I would say that it has made me a more confident and outgoing person because I know I have conquered an illness and now I am fully capable of conquering the world.

Some travel tips for people with epilepsy

Always let the people you are travelling with know that you have epilepsy, especially if you are feeling unwell. Let them know what to do if you have a seizure. This will minimise panic in the event of a seizure and you will feel a lot safer knowing that you will have someone to look after you.

Before you travel, book an appointment with your doctor. They can give you a check-up and give you notes on your medical history in case you need to go to hospital while travelling. You will also need a letter for customs stating what medication you have been prescribed. I haven't had any problems with my medication so far.

Always carry emergency contact details with you. It's a good idea to have them translated into the language of the country you are in. On mine I have details of the type of epilepsy I have, what medication I'm on and details on what to do if you find me unconscious. It's a common misconception that people can swallow their tongue during seizures so I also include instructions NOT to put a spoon or other object in my mouth. In Ireland, you can get a free ID/ emergency contact card from Epilepsy Ireland.

Don't take stupid risks. For me, things like cliff diving are completely off the cards. If you are prone to having seizures it's probably not a good idea to swim in deep water or go hiking alone. In saying that, you can't always let your epilepsy hold you back, we all need our moments of independence. If you feel like your epilepsy is under control and you are in the company of people who can look out for you then go for it, just don't do it irresponsibly.

Have fun! Don't let the fact that you have epilepsy hold you back. People use enough excuses not to travel the world. Epilepsy shouldn't be one of them.


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