Kate's story

When people think about epilepsy, they often think about seizures. But for Kate, the lasting impact of her diagnosis was anxiety. As she struggled to cope with the fear and uncertainty that followed, alcohol became a crutch that would shape much of the next decade of her life.

Content Warning: This case study contains references to drug and alcohol misuse

"When I was 19, I took ecstasy for the first (and only) time during my first year at university. I was at a club, most of my friends were taking drugs and if I’m honest, I was probably worried that if I didn’t take it, I’d look boring - despite being surrounded by non-judgemental friends. 

A few hours later, I started blacking out for a moment whenever the strobe lights flashed. I didn't understand what was happening, so I ignored it.

The next thing I remember I was in a taxi surrounded by my friends. I'd had a seizure. I was so confused and I asked my friend if I was going to die. She reassured me as much as she could and put me to bed. I convinced myself it was simply a bad reaction to the drug. When I saw my GP, they agreed that was the most likely explanation but advised me to take a number of precautions over the following six months, including avoiding baths, notifying the DVLA and making sure lifeguards knew about the seizure if I went swimming."

"I carried on drinking alcohol regularly but found I'd developed a new hangover symptom: severe involuntary jerks. I realised this was alcohol withdrawal and I could avoid the jerks if I had at least one drink the next day. 

Over a year after my first seizure, I had another when I was hungover, sleep deprived and having a panic attack because my car had broken down. When I came to, my brother was knocking on the car window saying, "Kate, are you okay?" I responded, "Who are you?" That memory still hurts. After this second time, I became absolutely terrified of seizures.

Because I'd now had two seizures I was booked in for an MRI and an EEG and I was diagnosed with Juvenile Myoclonic Epilepsy. I had been experiencing tonic-clonic seizures, and I was put on Levetiracetam, 500mg twice a day. 

The months that followed were horrible. I developed severe anxiety. I was scared of everything, in case I were to have a seizure and die. For about six months I hardly slept or ate. I don't know how obvious it was to everyone around me but looking back I was a complete shell of myself. Before my diagnosis I was both ambitious and laid back. But now every day was just about surviving. 

Although the medication completely controlled my seizures, the anxiety that followed my diagnosis never really went away. Looking back, it shaped the next decade of my life far more than epilepsy itself.

Drinking started as a way to take the edge off that fear, but over time it became less about enjoyment and more about survival. As my anxiety worsened, so did my reliance on alcohol. What began as heavy drinking at university gradually turned into dependence, and by the time I graduated, I was struggling to cope without it. 

I moved back home hoping for a fresh start but instead spent almost four years trapped in a cycle of drinking, isolation and declining mental health. I would spend months drinking myself into blackouts, either alone or with anyone who would join me. My behaviour became increasingly destructive. My behaviour got worse; I ruined several events including Christmas and holidays. I caused my family a lot of pain.

I wasn’t having seizures because I continued to take my medication, but I was binge drinking to oblivion to cope with the anxiety."

"Then, in 2018, I skipped several doses of my epilepsy medication and had three seizures in one day. I was admitted to hospital, but I discharged myself, went home and continued the cycle once again. 

Things got so bad that my mum moved out of her own house to get away from me. I'd drink straight vodka all day, getting no food or sleep. I didn't even want to get up for the toilet anymore, so I stopped going. 

One day I woke up and my stomach was in agony. I unblocked my mum's number and I called the ambulance. My Mum met me at the hospital. The doctors told me I needed immediate surgery. They called my whole family and asked them to come to the hospital to say goodbye to me because they didn't think I'd make it through the night. 

The emergency surgery worked. I woke up confused by the fact that everyone was there and I stayed for another week until they could get me back to full health. 

I didn't drink for about four months after this. In this time, I got a job and I met the man who is still my partner to this day I started trying to drink again in moderation, this time, I told myself, I could control it. 

In 2025, I underwent the same epilepsy tests I'd had 10 years prior. All the results came back the same as before, meaning nothing had changed and the medication was still working just as well. 

Despite being in a good place with work and my relationships, my anxiety came flooding back - it felt like I was being diagnosed all over again. I lost control of the drinking; I was back in a cycle of alcohol misuse and despair.

I'm not going to go into detail about the last drinking spiral I had - but that was the one where I decided, for the first time ever, I am never doing this to myself again. 

Looking back, I believe the return of my anxiety was because I was finally in a strong enough place mentally to deal with the emotional pain, so my brain started to process all the stress and anxiety I had been holding onto since my epilepsy diagnosis. I can see now that I never truly regained control of alcohol, I simply convinced myself I had. I wasn’t ready to deal with all the PTSD it had left me with. 

With the support of my partner, I began to explore ways to manage my anxiety and after trying a variety of treatments I was able to find one that worked for me."

"Now I have my anxiety under control, combined with being sober, I am the happiest I've been since I can ever remember. I don't feel very scared of my epilepsy or my anxiety. Sometimes I even forget they're there. I have connected to my childlike brain; I have so much excitement and curiosity for the world. Every day I go to bed grateful for my health now. Every day I wake up excited for my day. 

I wanted to share my story as a reminder that epilepsy is so much more than seizures. For me, it was the anxiety of worrying about when the next seizure might happen that had the greatest impact.

Epilepsy can be extremely isolating. I hope that others struggling with anxiety related to their epilepsy will see that they are not alone, and that reading my story encourages them to seek appropriate support rather than turning to alcohol. Help is available, and no one should feel they have to face these challenges on their own."

For those worried about their own or someone else’s drinking, please visit the Drinkaware website where they have information and resources that can help, including their confidential Drinkline service.