Mya's story

When Mya started waking up feeling disorientated and anxious, she didn’t realise it was because she was experiencing seizures whilst she was asleep. Diagnosed with epilepsy, Mya faced the prospect of losing her independence, just as she was about to leave for university.

Mya explains the impact of her diagnosis and how she navigated university. 

Diagnosis

When I was 17, I started waking up disoriented, distressed and deeply affected by events from the previous night that I couldn’t fully process or understand. It felt too traumatic to be nightmares; it was so intense I didn’t even want to think about the cause. 

Everything became clear one evening as my family was getting ready for bed. I had a tonic-clonic seizure in the hallway outside my parents' bedroom. They noticed my shadow moving strangely underneath the door and came out to find me having a seizure.

I was taken to hospital with injuries to my legs and a badly bitten tongue. Initially, doctors thought it might be a one-off seizure. But after returning home, I had another seizure within an hour and was taken straight back to hospital. The same pattern continued over the following weeks.

My mum managed to record one of my seizures, which helped doctors understand what was happening. I was diagnosed with nocturnal epilepsy and experience tonic-clonic seizures predominantly linked to sleep.

Living with fear

Epilepsy runs in my family. My mum has epilepsy, although hers presents very differently from mine, and thankfully she has now been seizure-free for around 16 years. My great-uncle had epilepsy and sadly died from SUDEP. Knowing that family history made my own diagnosis difficult to come to terms with.

I don't experience an aura or any warning signs before a seizure. There were occasions when I became aware during a seizure itself. I remember being face-down in my pillow, hearing myself struggling to breathe but being physically unable to turn myself over because my body was still convulsing. I became terrified that one night I would suffocate and my family would discover me the following morning.

Because of that fear, I stopped wanting to sleep, creating a vicious cycle: sleep deprivation is a trigger for me, so eventually my seizures began occurring during the daytime too. 

Medication

I was initially prescribed Keppra, but my seizures continued, so my dose was gradually increased. Alongside the seizures, I experienced significant side effects, including extreme fatigue, dizziness, headaches, loss of appetite, hair thinning, as well as what people often refer to as “Keppra rage”. My dose got as high as 3,000mg per day, but I was still struggling. 

Eventually, I was switched to lamotrigine while slowly reducing my Keppra dose, a process that took around a year and a half. The difference was transformational. Not only did my seizures improve, but I finally began to feel like myself again. I didn’t experience the same side effects I experienced with Keppra, and for the first time since my diagnosis, things started to feel more manageable.

Could I leave home?

Despite seizures, hospital appointments and medication disrupting my education, I managed to achieve the grades I needed to attend the University of Exeter. However, Exeter was around four hours from home, and I was still experiencing seizures.

My mum was understandably worried about me living so far away. After everything we had been through, moving away from the support of my family was a huge step for all of us.

Fortunately, my epilepsy nurse was incredibly supportive. She was very encouraging about me going and helped both me and my mum understand how we could make it work safely rather than simply telling me I couldn’t do it.

Preparing for University

Before I started university, I did a lot of preparation. I had a lot of support arranged for my studies prior to starting university. Before I arrived, I had met online with the person overseeing my course and knew that if I had concerns, I could go directly to her.

Once I had started, I would message my mum twice a day to let her know that I had taken my medication, and if I forgot to message her, she would call and remind me. I also had an epilepsy seizure-detection watch. If it detected a seizure while I was asleep, my mum would receive an alert and could contact the university. 

Estate Patrol had been made aware of my epilepsy and had access to my accommodation, so they could enter my room if I was having a seizure, stay with me while I recovered and organise further medical help or hospital treatment if it was needed. I also had support through the university's disability service and received a Disabled Students’ Allowance.

With socialising, I just made sure that the people I trusted and went out with knew I had epilepsy and understood the basics of what to do if I had a seizure. I would always factor in how late I would end up staying out, since sleep deprivation is a trigger for me, as well as other potential triggers like alcohol or missing mediation. 

Getting help

Throughout my journey, my family has been my biggest source of support, particularly my mum. I genuinely don’t think I could have done it without her.

Because she also has epilepsy, even though our experiences are very different, I never felt that I had to completely explain why certain things frightened me. She could understand parts of it in a way that somebody who had never experienced epilepsy couldn’t.

I received counselling to help process the trauma of those early seizures. Talking openly about what had happened helped me begin to come to terms with it. Over time, I developed coping strategies for my anxiety too. Breathing exercises and listening to podcasts at night help me focus on something other than the fear of having a seizure.

Living fully with epilepsy

My outlook on life has changed enormously. At one point I felt as though university might not be possible for me. Travelling independently seemed almost unimaginable.

Since then, I have graduated with a Bachelor of Science degree, travelled around Asia for several months, and I am about to begin my master’s degree. I have even jumped out of a plane at 15,000 feet!

I still have to be responsible. I take my medication, I check whether activities are safe for me, I understand my triggers, and I put precautions in place. But once I’ve done that, I want to live my life as fully as I can.

Advice for Students

To students about to leave home for higher education, my number one tip would be: prepare.

Even if you have just been diagnosed and you have absolutely no idea what "preparing" is supposed to look like, you do not have to work it all out yourself. Contact DSA, email your university or speak to the university's disability or accessibility team and simply tell them that you have epilepsy and want to get support organised before you arrive. They will usually be able to point you in the right direction and help you work out what needs to be put in place.

For me, independence did not end up meaning doing everything completely on my own. It meant having the right systems and people around me so that I could safely get on with my life.

Once I knew those precautions were there, I could stop thinking quite so much about everything that might go wrong and enjoy being a student.