Hi! My name is Vera and I am one of those with a brain cavernoma. I from Sweden and this is my ongoing story. I hope I can write an ending sometime in the near future.
Since I was a little girl, probably around 10 years old I have had one day per month these extreme feelings of deja-vu and euphoria. These feelings held for about 10 to 20 seconds and then disappeared like nothing had happened. They often came in clusters so I could have 10 of these feelings in one day. Since it was a good feeling and so much like a deja-vu experience I never talked about it and thought everyone had the same experience.
I have a memory of when I was a little older I googled it and didn’t find anything that sounded the same and was a little bit confused. I also remembered thinking that I was “supernatural” because I would sometimes hear music and voices when I had these weird feelings. But more than that I never thought about it.
My life kept on going and I got older. When I was 20 I stayed at a friend’s house and went out partying. The day after I was hungover and felt strange. I got up from bed and went to the toilet so I could be alone. Once I was there I started feeling super weird and outside my body. Then I don’t remember anything until I woke up in my friends couch while my friend was talking to an emergency-doctor.
She had heard me from the bathroom where I apparently had “slammed” the door many times in a row. We drove to the hospital where the doctors had me doing an CT-scan which showed nothing abnormal. They told me that I probably had fainted and hit my head on the floor. A little concussion probably and therefore I had had a seizure and cramped. That explained the noise my friends had heard from the bathroom.
My life then went on and everything was normal, I continued to have my deja-vu feelings as usual. Until April 2021. I hung out with my friend and suddenly I couldn’t read the text on the computer I was using. Everything went blurry and I started to feel very strange. My eyes started to move side to side and I couldn’t stop them nor close them. Then I don’t remember anything until ambulance-workers walked me to an ambulance. I was driven to the hospital once again and they did another CT.
After an hour of waiting a doctor came in to my room and told me that my left-brain half had a deviating venous blood flow and wanted to do another CT and a MRI. I felt normal in the evening and was sent home. A week later a doctor called me and told me that I have a cavernous malformation in my left temporal lobe (a pretty large one in my left amygdala and hippocampus) and probably have epilepsy.
She asked me if I ever had another epileptic seizure and that was the moment where I pieced together my seizures and dejavu-feelings. Almost my entire life I have had focal epileptic seizures many times a month and I was unaware of what it was. My seizures had also turned in to tonic clonic seizures twice. I was started on lamotrigine right away and an investigation started into whether they could operate on my cavernoma or not. I spent a large part of the autumn in the hospital doing long EEGs, MRI scans and neuropsychological evaluations.
Now, one year later, I’m waiting for my operation-date. It feels good but also pretty scary. I am going to do an amygdalohippocampectomy and the risks are relatively small. Worse memory and a little difficutly finding words are the “big” risks but I already experience both of them. My medication works well and I only experience very small focal seizures now. Before this happened I studied a bachelor in molecular biology and my goal after the surgery is to finish the last year of my university courses.
Wish me good luck!