Leah's story

A brain haemorrhage and the surgery that saved my life didn’t just change my health; they changed who I am. For a long time, I tried to keep pace with the woman I was before, wanting to match her independence and energy. But recovery taught me something important: I can’t go back, and that’s okay. Instead, I’ve learnt to slow down, give myself time, and accept the new version of me, not as less, but simply different.

When I had my first seizure in 2022, I didn’t know what was happening. It started with a strange tingling sensation that lasted a couple of minutes. It felt like tiny bugs crawling across my head and face. My mum urged me to see a doctor and after an MRI and EEG, specialists confirmed the diagnosis: focal epilepsy.

I was prescribed Keppra, which controlled most seizures, and life carried on almost as normal. It took a bit of time to get used to the medication; I felt more tired than usual, but I soon adjusted. I managed occasional breakthrough seizures and continued my normal life working as a project manager. I didn’t really make any big changes; I’d still go out and have a few drinks with friends.

In June 2025, I was staying in the apartment of my German partner, Henry, just outside of Hanover (I’m usually based in Oxfordshire). I started having more breakthrough seizures than usual, which I put down to the stress of a new job. Even when I collapsed on the floor, I blamed low blood pressure and thought a change to my medication would fix it. One afternoon, after wrapping up an online meeting with my boss, I went to lie down with a headache. I began suffering extreme amnesia, unable to remember anything, even simple details, like where I was at that moment. Suddenly, I was vomiting, delirious, and in excruciating pain. Henry realised something was seriously wrong and rushed me to hospital in Bielefeld, where I had my first full tonic-clonic seizure.

I woke up a week later with no memory of what had happened. During that time, doctors had given me an MRI and discovered I’d had a brain haemorrhage. They had fitted an intraventricular drain, a metal straw inserted in my skull to remove the blood. It wasn’t until the blood cleared, almost a month later, that they found the cause: a walnut-sized cavernoma—a cluster of abnormal blood vessels. Cavernomas are rare, but mine was even more unusual: it was in the ventricles, an area so uncommon that less than 2.5% of people with cavernomas have it there. No one at the hospital had ever seen a case like mine. Doctors believed the cavernoma was the cause of my epilepsy and that for three years, it had grown silently until it dramatically—and almost fatally—haemorrhaged.

The Hardest Decision

Doctors told me the haemorrhage could happen again, but there was no way to predict when. Surgery was the only option to remove the cavernoma, but it was complex and success wasn’t guaranteed. The time between being given the choice and making the decision was the worst. I wanted someone to tell me what to do, but it had to be my choice. After a great deal of thought, I decided to have the surgery. When I saw a scan of my skull and realised how unnatural and out-of-place the cavernoma looked, I knew I had to have it removed. The night before the operation, I wrote my will. It was the most I cried during the whole experience.

On July 9th, I underwent surgery. An entire bone flap on the side of my head was removed, the cavernoma cut out along with some healthy tissue as a precaution, and the flap reattached with titanium screws. During the five-hour operation, my parents waited in the prayer room.

Surgery went well, but recovery has been tough. I experienced vision problems and new types of seizures. I had to learn to cope with high doses of medication that left me feeling foggy. Thankfully, other than one small focal seizure when I was first discharged, I have been seizure-free since I left hospital. But I have had more tears since leaving the hospital than when I was in it.

Inside, my only goal was to get out. Once I was home, recovery became more complicated. I’ve been playing catch-up with my past self—the version of me before the haemorrhage. She was super independent, travelled alone, got a PhD, and never let epilepsy stop her because medication gave her control. Now that control is gone. I look in the mirror and don’t see that same girl anymore—because of my scars, my choppy hairstyle, my poor memory, and the maximum-dose epilepsy meds.

I don’t feel like her anymore. My medications make me tired, my memory is still poor, and I forget my life day to day. I’m a different version of myself, always desperately trying to catch up with the old me. The one thing that’s helped is treating myself like I’d treat a friend. I wouldn’t tell a friend to recover faster, be less restless, or improve their memory quicker—so why do that to myself? My epilepsy has changed, my medications have changed, and I now have a hole in my brain where a cavernoma once was. Of course I’ve changed.

Within our community, we face unexpected change all the time: breakthrough seizures, medication adjustments with awful side effects, and sometimes even brain surgery. That sucks, no denying it. But the universal perception of epilepsy makes it harder. People think epilepsy is just seizures, but it impacts every part of our lives, all the time. That perception can feed into how we see ourselves. I forget I’m not built like a perfectly healthy 30-something. I’m running as fast as I can, but the goalposts keep moving. Worst of all, I forget that and treat myself harshly. Now I ask: what would I say to someone else in my community facing this? I’d be gentle, patient, and proud of them for even trying. I’d never judge them for how long it takes. That’s how I treat myself now, as a friend, and I reward her for every little step forward.

The hardest part of my journey was feeling alone. People mean well, but they can’t relate. You can be empathetic without saying you’ve experienced the same thing. By sharing my story, I hope others facing epilepsy or rare brain conditions won’t feel as isolated as I did. I’ve found support through online communities and resources, and I want others to know help is out there.