It was the hammering on the bathroom door that jolted me awake.
Someone was saying my name on the other side of the door. I raised my heavy head from the wet floor. "Yep," I mustered in response. As I parted my lips to speak, I tasted something metallic — blood.
"Rachel?" the voice repeated. "Open the door."
I have no recollection of unlocking the door. All I remember is the cloud of confusion that engulfed me as I sat on the edge of bed trying jog my short term memory. "We're in Morocco," my friend told me, in response to my question about our whereabouts. "Marrakech, to be precise," he added, his face full of worry.
At some point during that hour locked inside the hostel bathroom, I'd had a seizure. It wasn't the first, nor was it the last I'd have, but it was certainly the first time my epilepsy had reared its head when I was traveling. My cheekbone was throbbing. It would later turn into a bruise, a souvenir from hitting it on the edge of the shower pedestal. I couldn't remember the last 24 hours of my life. I couldn't remember flying thousands of miles from home, how our flight had been delayed, how we spent the night lying on the cold hard airport floor.
Those memories flooded back an hour later. I recalled arriving at the hostel and attempting to nap. Awaking with a start, my thoughts felt jumbled, like a disordered Rolodex.
Then my limbs started jerking involuntarily. With each twitch, I drew in a sharp intake of breath that sounded like a shocked gasp. It'll pass, I thought. Those twitches were my body warning me that a seizure was coming. For some unfathomable reason, I didn't heed the warning on that occasion. I got up to take a shower and locked the door behind me.
What I learned was how to travel with epilepsy.
That day I realised my epilepsy wasn't the greatest travel companion. I wasn't born with epilepsy, I had my first seizure at age 16. And from that moment on, my life became a hazardous obstacle course — the only reward was new knowledge of my own limits.
Those limits, I learned, were my seizure triggers — sleep deprivation, excessive alcohol, stress, and traveling long distances. The latter was a limit I was in no hurry to accept. I figured I could do my utmost to ensure I got enough sleep, be careful with booze, and manage my stress levels. But to stop traveling? No.
I did not stop traveling.
I was determined to make sure that seizure in Morocco didn't ruin my trip. I rested up, got plenty of sleep, but we went for walks and explored the city. When I was feeling strong again, we went trekking in the Atlas Mountains. Then we went to the Sahara Desert.
There would be more seizures on hotel bathroom floors. More sleepless nights in airports. There'd be near-misses, too. All of them, lessons learned the hard way.
What I learned was how to travel with epilepsy. Now, if I'm in a different time zone, I set an alarm on my phone to make sure I take my anticonvulsant medication at the exact time I take it every night when I'm home. I make sure I bring more than double the amount of medication I need for the trip and split the packets equally into my hand luggage and hold luggage. I avoid booking flights when I have my period, as my menstrual cycle has been known to affect my seizures. If I'm taking a long-haul flight, I pack Valerian tablets and a sleep mask to make sure I sleep on the plane. That failing, I go to sleep straight away when I arrive at my accommodation. The first few days, I let myself sleep late or take naps if I need to. If I start twitching, I stay in bed in the hope that they'll pass.
Whatever I do, I won't let my epilepsy stand in the way of my travel plans.
I'm not alone in this. Sophie Heilbron, 26, was diagnosed with Jeavons Syndrome, a rare form of epilepsy, when she was seven years old. "I think I was a bit too young to realise at the time the impact it would have on my life, but as I’ve got older I’ve started to learn a lot more about the condition as well as how I’m able to deal with it," she told me.
"For as long as I can remember, travel has always been a passion of mine," she said. "I didn’t want my epilepsy to affect that." Heilbron said that every time she had a seizure she learnt something about herself. "One occurred after a heavy night of drinking with very little sleep, another occurred when I had the flu and had to sit some school exams," she explained. "I quickly realised that stress, tiredness and dehydration were common triggers."
At the age of 18, she had finished Sixth Form (high school in the UK), and she booked a girls' trip to Zante, Greece. "Realistically I knew that alcohol would be on the cards and sleep would be precious, so I actually wrote a three page booklet for the other seven girls going with me called Sophie’s Guide to Epilepsy so that in the unlikely scenario that I did have a seizure, they would know what to do," she said.
"Waking up after the first night of the trip, I knew I wasn’t feeling great but wanted to make the most of the Greek sunshine so I went out to the sun lounger by the pool and within 10 minutes was having a seizure," she recalled. Her friends handled the situation and made sure she wasn't in any danger. Once she'd regained consciousness in her bed, her friends told her what had happened, they called her parents, and they went to the local hospital to make sure she was OK.
"I think in a lot of scenarios, that would’ve put me off traveling but no, it did the opposite, I realised that as long as I’m around people who are aware, then I’ll be in safe hands," she said. "Since then, I’ve lived on my own in Australia for over a year and try and take as many trips now I’m living back in London including solo travel to Vietnam and Mexico."
Through identifying her seizure triggers, Heilborn has learned her limits. If she's had a long day of traveling, she knows she needs to sleep. If she doesn't feel great, she stays indoors. She always carries sunglasses, a sunhat, and emergency medication with her wherever she goes.
"Personally, I believe that as long as you feel comfortable and feel as though you’re able to make people aware of your situation, living with epilepsy shouldn’t stop you from doing anything that you’re capable of," she said.
"Epilepsy shouldn’t stop you from doing anything that you’re capable of."
Heilborn also makes a point of telling people she meets while traveling that she has epilepsy just in case she has a seizure, and lets them know what they should do. In the event of a seizure, she has her medications listed under her medical ID on her phone too. "I’m never going to stop traveling and I get such a sense of freedom when I’m alone in another country," she told me. "As long as I feel safe, then I know I’m going to have a great time."
Having epilepsy doesn't have to be a barrier to traveling overseas, according to Chantal Spittles, of the UK nonprofit Epilepsy Action. "It’s important to consider how long you’ll be away for and speak to your doctor about getting more medication than you’ll normally need," said Spittles. "This will make a huge difference in the unfortunate case it gets lost or stolen, or your return trip is delayed."
The summer after my travels to Morocco, I spent two months working in New Hampshire, in the U.S. Those months were seizure-free, but as I was packing to travel around Cape Cod, Massachusetts, I couldn't find a week's worth of medication. The missing packets of pills were needed to get me through the rest of the trip and I couldn't risk not taking my medication.
I got advice from a nurse at my place of work, and I ended up having to go to hospital to get a prescription for the missing anticonvulsants. Neither the hospital nor the pharmacy would accept my travel insurance paperwork. When I returned to the UK, my travel insurance company refused to reimburse me. It was a costly, upsetting ordeal that I hope to never repeat. As Spittles told me: "It’s also important to make sure you have travel insurance as the cost of medical care and treatment can be very expensive outside the UK."
"If there’s a time difference, think about what time you’ll need to take your medication to minimise the risk of seizures," added Spittles. I learned that lesson the hard way when I travelled to the U.S. a few years ago and didn't take my medication at the usual time. Instead, I rather stupidly had drinks with friends and took my medication at 2 a.m. EST — many hours after I should have done. The next morning, I had a seizure. Ever since, I've been extremely strict with myself about taking medication at a set time while traveling.
Epilepsy isn't the only neurological condition that can make traveling more challenging, according to Dr. Fizzah Ali, a neurology registrar at the NHS Royal Free hospital in Hampstead, London. Conditions like migraines, multiple sclerosis, Parkinson’s disease, and other neurological conditions can make traveling more complicated. "As someone with a neurological condition you are an expert of sorts. Through your lived experience you will have an idea of your symptom set, the factors which help manage it, and the factors which trigger your neurological condition. Keep these in mind when planning your travel abroad," Ali said.
While our bodies and neurological conditions are individual, she shared some general advice that can make traveling with a neurological condition less stressful. "These include managing hydration, meals times, fatigue and sleep, as well as avoiding recreational drug use including excess alcohol, whilst traveling," said Ali. "Discuss your plans with your GP, neurologist, or specialist nurse. You may also wish to consider informing relevant parties such as the airline about your condition."
Epilepsy Action has a list of useful advice for traveling with epilepsy. The Epilepsy Society also has a great list on its website.
When I was diagnosed with epilepsy when I was a teenager, I could never have imagined traveling the world. But with each seizure, I learned something new about my condition and how I might be able to prevent seizures. Since then, I've lived abroad in France, Kenya, and the U.S.. I've travelled throughout Africa, Asia, North America, and across Europe.
Lying on that bathroom floor in Morocco, I feared the worst: that this would be the last holiday I'd go on. I'm so glad it wasn't.
Topics Health Social Good
