Living and Travelling with Epilepsy: Seizures, Pills and My Obsession With Sleep
This isn’t medical advice – just my experience living with epilepsy and how it’s shaped the way I travel and navigate life.
My Background With Epilepsy
It started when I was 10. Well, in hindsight there were signs before that but it arrived with full force when I was 10. It turns out I wasn’t just a child who frequently stopped paying attention in class in a way that seemed abnormal, as if I wasn’t really there.
I was in Bosnia with my mum on a trip with our church and had my first major seizure. At the time it was known as a grand mal seizure – the type that everyone thinks of when they imagine a seizure. These days it is called a tonic-clonic seizure, a slightly comical name for an extremely unfunny experience.
It wasn’t the ideal place for it to happen – far from home and involving discussions with doctors via a translator. Once back in London I was seen at the famous children’s hospital, Great Ormond Street Hospital. Following an EEG at GOSH, I was diagnosed with a condition that rules over a lot of my life.
What Daily Life Looks Like For Me
As epilepsy goes, I am extraordinarily fortunate. I’ve learned over the years that epilepsy looks different for everyone. Other people I’ve met have had additional conditions alongside it; I haven’t. My experience has always been fairly straightforward in that sense.
People’s experiences with epilepsy vary widely. In my case, I haven’t had a seizure in years. It took around 15 years to find the right medication and dosage, but things have been stable for me for a long time now.
Long may it stay that way.
I’ve been seizure-free for long enough that I can drive, something that seemed impossible when I was a teenager and everyone I knew was getting their learner’s license. I think that’s why I love driving and road trips so much now – I didn’t think I’d ever be able to do it.
But I still have epilepsy. I’ll still take daily medication for the rest of my life, and I am constantly thinking about sleep. The lack of sleep is my primary trigger for seizures, along with a sensitivity to flashing lights that is strong enough that my EEG had to be stopped before that portion of the test was complete.
And I’m obsessed with sleep. Not in the way that people who love lie-ins and naps mean it. My obsession is calculating how much I have had, whether plans I have will fit in with the amount of sleep I need, and at 2am when I still can’t sleep whether the next day will end my years of being seizure-free.
The medication that works for me also makes sleep more complicated, which has been a long-running frustration. Some of the usual things people suggest for sleep just don’t fit with what I can do or what works for my body, so I have a small monthly prescription for sleeping pills to fall back on.
I use them sparingly because I’d rather not rely on them unless I need to.
My brain cannot cope with the lack of sleep that other adults regularly manage. I can’t power my way through it.
I wonder what it is like for new parents who are chronically sleep-deprived – one of the main reasons I decided to never have children is my absolute inability to cope with just one night of sleep deprivation. It wouldn’t be safe for a baby to have me as their caregiver.
Every day, my ability to not just function normally but remain conscious is determined by the previous night. Seizures can be dangerous, which is why I have to take them seriously. I only take showers, not baths, because that’s what feels safest for me.
Alongside the day-to-day realities of epilepsy, for me there’s also a quieter fear that sits in the background. For me, that fear has always centred around SUDEP.
I’m not going to explain it here — it’s something people can look up if they want the medical details — but simply knowing it exists has shaped the way I think about my condition. It’s rare for me to spend a lot of time directly considering it, but it’s a shadow that never fully disappears.
When I do have a seizure, it takes days for me to fully recover. Aside from the pain that comes with muscles contracting and stiffening repeatedly, there is a loss of memory and lots of confusion.
I might be conscious and functional a few hours later, but my ability to reason and write coherently takes days to come back. The worst exam result I ever had was three days after a seizure – an English Literature A Level exam that was a fairly sizeable percentage of my overall grade.
In some ways I think observing a seizure is scarier than experiencing it. After all, I only experience the after effects – I’m not conscious for the main event with all the twitching, rolling of eyes and going blue from lack of oxygen. It probably looks very scary to someone who hasn’t seen a seizure before.
Despite all this, I try not to let it stop me from doing things. There are some absolute no-gos – anything involving strobe lights, anything that requires staying up very late or being in a situation where sleep is difficult. But I don’t want to let my worries about what might happen completely take over.
How Epilepsy Shapes My Travel Experiences
The activity that is most important to me is travel. I’m fortunate to be able to travel a lot, but it does come with additional complications. I book travel arrangements to work around my sleep needs, not to get the best deal. I allow extra days to get over jet lag. I have to take a lot of medication with me.
When I spent a few months travelling around the USA a lot of my hand luggage space was taken up by medication. Between the seizure medication, supplements to help with some of the side effects and the sleeping pills to help with the insomnia, I had around 700 pills with me.
I was slightly surprised that no one seemed to care. They could have been anything, although to be fair the London to New York route probably isn’t considered high risk for sneaking illicit substances through customs.
On my most recent trip, I set out with a much more moderate 350 pills.
Most days, epilepsy is something I’m aware of without actively thinking about it. It sits underneath everything — not dominating my choices, but adding an extra layer of consideration that other people don’t have to make.
The biggest factor for me has always been sleep. If my sleep is disrupted, everything feels slightly off, and that’s when I notice my condition the most.
Jet lag is the clearest example of that. I don’t worry about flying itself, but the time-zone shift completely messes with my sleep pattern, and sleep disruption is one of my biggest personal triggers. When I land somewhere after a long-haul trip, I give myself a few days to make sure my sleep patterns settle before I start exploring.
None of this stops me from travelling — I just end up pacing myself a little differently.
What people don’t see are the small internal calculations. Checking in with myself at odd moments. Paying attention to how tired I am. Deciding whether I feel “off” in a way I can’t quite define. These aren’t dramatic moments — they’re quiet ones — but they shape the way I move through my day more than anything else.
Travelling Alone With Epilepsy
I mostly travel alone, being single and without kids. When I travel with friends, they have always been very understanding about the sometimes inconvenient arrangements I need to make.
I know I’m lucky to have friends and family who are so willing to make allowances for me. I can’t always be flexible with my travel arrangements in a way that would suit other people – the risk is too high.
I woke up once in Melbourne, Australia after having a seizure. I didn’t know anyone in the country. I was confused, bruised, and had hit my head on a piece of furniture in my hotel room. Something that was hard or sharp enough to make me bleed.
I dragged myself to the hospital to be seen by a doctor, not having anyone with me that could keep an eye on me and get help if I had another seizure. It’s not an experience I care to repeat and the memory of it is still very hazy.
I’m cautious about the trips I take, especially as a solo traveller. Will I be able to communicate in a confused, post-seizure state that I need help? Will people understand what’s wrong? I don’t usually tell anyone I meet – not hostel roommates, not tour guides, not seatmates on a plane. It’s not secrecy; it’s just how I’ve learned to move through the world.
Most of the time, travelling alone feels completely normal. But there are moments when I’m more aware of it: arriving somewhere jet-lagged, feeling unusually tired, or navigating a busy city when something feels slightly “off.” Those are the moments I notice my condition most, even if no one around me does.
Travelling With Epilepsy Medication (My Routine)
Travelling with medication is simply part of my routine now. It’s not something I make a big deal about — it’s just one of those practical realities I’ve learned to work around.
For me, that means keeping my medication in my hand luggage rather than checked bags, because the idea of losing everything I rely on in a delayed suitcase is a level of stress I’d rather avoid. I also keep everything in its original packaging with the prescription details visible — it just makes travel smoother and saves awkward explanations at customs.
Because rules around medication can vary, I personally check what’s allowed before I travel, especially for my sleeping tablets. Time zones can complicate things too, so I set alarms or reminders for myself when I need to take my pills.
I’ve also learned that the generic travel insurance bundled with bank accounts rarely covers pre-existing conditions, so I always buy specialist insurance and make sure my epilepsy is declared.
And if I’m visiting a country where I don’t speak the language, I carry a short note explaining my condition and medication in that language — not for anyone else’s benefit, but because it makes me feel more prepared in case something goes wrong.
Why I’m Sharing This
If you got this far, thank you for reading a bit about my story. It’s a condition that many people live with, even though it often isn’t well understood. There’s no telling what will happen next. Maybe I’ll never have another seizure. Maybe I’ll have one tomorrow. But in the meantime, I want to keep its limitations to a minimum.
When I was younger, personal stories about epilepsy mattered more to me than any medical leaflet. I didn’t know anyone else with the condition, and doctors can’t always explain what my life would really be like.
I’m writing this in that same spirit — not to give advice, but simply to be honest about what life and travel can look like with a condition many people never see.
Questions I’m Often Asked About Travelling With Epilepsy
Do I travel alone with epilepsy?
Yes — I mostly travel alone. It’s what I’m used to, and it feels normal for me most of the time. That said, travelling solo with epilepsy means I stay more aware of how I’m feeling: whether I’m tired, whether something feels “off,” whether I’m jet-lagged.
Does jet lag affect my epilepsy?
The flying itself doesn’t worry me, but the time-zone shift absolutely affects me because of how closely my epilepsy is tied to sleep. Jet lag completely disrupts my sleep pattern, and that’s when I notice my condition the most. I usually give myself a few days after landing to settle into a rhythm again before diving into sightseeing.
How do I manage sleep when travelling?
Sleep is the biggest factor in my daily life and in my travel planning. For me, trips are built around when I can sleep: the flight times I choose, the number of recovery days I add, when I explore, how long I stay out. It might look overly cautious from the outside, but it’s what keeps me feeling stable and able to enjoy the places I visit.
Do I take epilepsy medication with me when I travel?
Always. Taking medication is such a normal part of my routine that packing it feels like grabbing my passport. I keep it in my hand luggage, in the original packaging, and I slightly far more than I’ll probably need — not because I expect problems, but because running out simply isn’t an option for me.
Do I tell people I meet while travelling that I have epilepsy?
Usually, I don’t. Not because I’m hiding it, but because it doesn’t feel necessary most of the time. The only moments I question that choice are times when I’m jet-lagged, overtired, or feeling slightly “off.”
How does epilepsy shape the way I plan trips?
The biggest difference is that I pace myself differently: I plan around sleep rather than around savings or convenience. I book flights that won’t leave me exhausted. I add buffer days. I choose itineraries with flexibility built in. For most people, those choices probably look overly careful — for me, they’re what make travel possible.
