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My experience with Cavernomas

Iona explains their experience living with cavernomas and how they have affected their life.

I have 4 cavernomas, which are abnormal clusters of blood vessels on the brain. My cavernomas were caused by late effects of radiotherapy. Some people have asymptomatic cavernomas, which means they don’t experience any effects from their cavernomas. However many people have symptomatic cavernomas that can cause several difficulties including seizures.

At first we were unaware that I had cavernomas because they were not symptomatic and didn’t cause any problems. But, in January 2020, I had my first seizure. I was on placement in a primary school doing an activity as part of my childcare course at college. The activity was my first physical assessment which involved playing ‘Simon says’ with the children. This made me feel scared and confused.

Following the activity I walked over to my assessor to gain feedback and the first thing I remember was waking up with several people surrounding me including members of the school staff, my parents and my assessor. Over the next couple of weeks, I had multiple other seizures.

Having multiple other seizures made me feel frustrated as I felt that I didn't have control of my body and that I had to be careful about what I was doing and when.

After having so many seizures, I had an electroencephalogram (EEG). This involved me lying down on a bed for an hour with stickers called electrodes being placed on my head. I will never forget the nurse conducting the test asking me if I was okay, which I was. The EEG discovered that the activity in my brain is similar to what it would be if I was having a physical seizure—this wasn’t ‘normal’.

Now, my symptoms are more manageable. I manage my seizures with medication which is occasionally changed in order to find the best dose and medication for me. I feel both relieved and frustrated about medication, as I feel good there is some way of managing seizures, but also frustrated that it means taking several tablets a day. The cavernomas have also caused other symptoms, such as fatigue, memory loss and occasional slurred speech and struggling to articulate myself.

Currently, I continue to live my life as normal as possible. I do this by ensuring that everyone I meet or spend long periods of time with are aware of my seizures and what to do if they witness me having one. The main piece of advice I can give to anybody with a rare condition is to live life to the best of your ability, as that is all you can ever do.



Instagram: @cavergirl_2002


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