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My Cavernoma and Epilepsy: Sarah’s Story

I started having seizures in 2013 at 32 having had no history at all, but it took until 2017, following new seizures, to get an MRI which showed up my cavernoma, situated in my left frontal lobe. I call these my ‘new seizures’ as the first ones I had were tonic clonic, whilst these are small in comparison. I’m 100% conscious throughout, I get a flicking in my eyes and turn my head to the right. However, I can’t talk (found out slightly hilariously when I tried to talk to my husband and just said ‘nang, nang, nang!’)

The neurology team I was under at the time didn’t really know what to do with me, saying there was nothing they could do and I should just carry on with my life. This lead to a bout of depression. You don’t tell someone they have something in their brain and say just forget about it. My seizures were bought under control and I’d been almost 2.5yrs seizure free.

Fast forward to 2020 and pregnant with my son. We’d moved house and I was now under a different hospital trust. At 16 weeks, I had another seizure. I then had a seizure probably every 4-5 weeks right the way through and still now, my last was about 6 weeks ago.

The team here, however, are completely the opposite. My case was taken to a board of neurologists and radiologists with the outcome that my Cavernoma causes my seizures. I felt/feel elated to have a definite link. Finding out that the seizures and cavernoma are related was the biggest weight off my mind and I have an appointment to discuss the options for surgery going forward.

I’ve obviously had a lot of freedoms taken away, the big one being driving, but I do count myself lucky. I know of lots of other people who have symptoms so much worse than me.