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My Cavernoma and Epilepsy: Heather’s Story – Epilepsy Week 2021

In 2016, I was pushing my 10 month old son in his buggy through the park, and experienced a shooting pain in my right arm before collapsing into a tonic clonic seizure. And there began by journey with Epilepsy and my Cavernoma. A further tonic clonic seizure in A&E and a CAT scan confirmed a bleed on the frontal lobe of my brain. I was started on Keppra (Levetiracetam) to help control my seizures. It was a very scary time, as I didn’t really know what was going on, didn’t yet have an actual diagnosis and primarily was in hospital away from my son for the first time. When I returned home, I was tired and worried about having more seizures. I did have another one whilst at home and it was evident that things were not yet under control.

It took a number of months to get the seizures under control by increasing my dosage as recommended by my neurologist and GP.  Thankfully things calmed down and became much more localised. All the same, any twitch in my right hand would fill me with dread wondering what was coming next. It was a very anxious time, I was worried about being on my own, or with my son in case something happened- at that point in time I found a personal alarm helpful.

Finally, after being diagnosed with a Cavernoma close to my right motor strip in my left frontal lobe, it started to become a little clearer and manageable. Having Epilepsy did change things, for example not being able to drive. My partner and friends were brilliant at giving me lifts and I think you need not to be afraid to ask for a lift! My son loves the bus and we walked/balance biked everywhere together. I started running with a local club through the couch 2 5k scheme with run leader’s which helped me feel safer in case something happened.

My seizures are, touch wood, under control and my Cavernoma behaving. Although over the Christmas period in 2018, I did have a recurrence of my seizures (thankfully only partial seizures) with no change in my Cavernoma. There is a bit of me that wonders if painting my new house, moving house and the madness that Christmas brings just triggered a reoccurence! I don’t think it is every clear cut with Epilepsy what can trigger seizures.  But this time I wasn’t nearly so scared, my Epilepsy nurse gave me great advice and support and I was more just annoyed that it was ruining Christmas!!

At the moment, whilst I feel really lucky, the worry of having a seizure is always there, particularly in new places or situations, or remote holidays but I do my best not to stop it from leading the life before I knew I had a Cavernoma and Epilepsy. One of the things it has absolutely taught me is to have empathy for people and we never quite know what is round the corner. For me, the support family, friends, colleagues and access to the right information has really helped my Epilepsy and Cavernoma journey.