Our phone chat #12 – Carl

Maria: Hi Carl, it is always lovely hearing from you and to know that you are doing well. Your epilepsy story is an interesting one because you have been experiencing unusual thoughts and feelings for a very long time now. You never imagined that you could have epilepsy but the brain is a mysterious organ and people can experience seizures other than tonic clonic, which most people instantly recognise as being epilepsy. Please tell me about your very first ‘episode’?

Carl: Back in October 2015 whilst composing music, I experienced a sudden indescribable feeling that completely overwhelmed me. It felt like I was experiencing a past memory or living out something that I had previously dreamt, and it made me feel very fearful. I had never experienced this before and I put it down to having a severe lack of sleep and depression. I didn’t seek help at the time because I didn’t think that it was anything that could be explained. Perhaps it was just that I was so tired and my brain was telling me to sleep and relax. I took up meditation, which I thought would help with my anxiety.

In 2016 I wrote a lot in my journal about feeling washed out, woozy, and feeling continuously tired. I went to my doctor in October to talk about my fearful jumbled dream-type episodes and to get my moles checked. She referred me to the neurology department to have a sleep-deprived EEG which came back clear. At the same time, I was diagnosed with melanoma and had a malignancy removed. It was Stage 1A. This experience caused me massive amounts of anxiety and I became a hypochondriac, convinced I was going to die of cancer. This continued into 2017. I started to fear dying of a heart attack, or stroke. I didn’t want to be left alone and couldn’t stay by myself at night. I saw a psychiatrist.

During 2017 I also started to worry about my memory. I tried not to remember past events to avoid my unusual fearful jumbled-dream episodes from happening. My doctor prescribed anti-depressants in February but I didn’t take them. My sleep was consistently very poor and I contemplated suicide.

By September I was convinced that I was getting dementia. My memory was terrible, especially my short term and I started forgetting the names of people who I knew quite well. I decided to take the beta blockers and melatonin prescribed to me to improve my sleep and anxiety levels. I had a CT scan which confirmed that I didn’t have dementia, which was a relief.

In October I had more jumbled dream-type episodes and I began taking anti-depressants. I sought help from a male counsellor, who felt that these episodes were repressed memories trying to come back. I went back to meditation but I found myself getting derailed by my anxiety, which caused me to have bouts of nausea. I developed appendicitis and had to have an appendectomy in December 2017.

Maria: In epilepsy terms, episodes like these are called focal aware seizures. A person is aware that something is happening in their brain and they can describe it. In your case it was the sense of fear, of jumbled dreams and memories. Other people can hallucinate, experience deja vue, jamais vue, and a whole raft of experiences that can barely be explained. It all depends where these seizures are happening in the brain.

Carl: Interestingly, my ‘episodes’ seemed to develop a pattern of happening every three months and they would come when I least expected them, for example, when I was playing football, playing music − in fact they would even wake me up from my sleep. When they happened, they created a huge degree of anxiety and I became aware that it was starting to affect my memory. This really bothered me.

Maria: Memory loss is really common in people experiencing seizures but at this stage you didn’t know if you had epilepsy. Did your GP click that something else was happening since your beta blockers appeared not to be working?

Carl: It wasn’t until the beginning of 2020 that I eventually managed to persuade my GP to refer me back to the neurology department at the hospital. I had a series of tests to determine if in fact I was okay. I was starting to worry that something nasty was happening to me.

My MRI, EEG, blood, and neurology tests came back normal but the specialist was able to quickly deduce that I was having seizures in my amygdala. This region of the brain is known as the flight/fight/freeze area and it was being switched on. It somehow activated my dreams and past memories and I became fearful because the brain saw these jumbled messages as me being in danger. These seizures always leave me feeling scared. Frightened. Fearing death. And yet I have nothing to fear in my life.

Maria: Anti-epileptic medications are designed to hopefully stop your seizures so that you can lead the life that you want. Hopefully they will also help to alleviate your anxiety and depression.

We will stay in touch, Carl. In the meantime, take care and enjoy the life that you have. I know that you are a great musician and I look forward to your next gig.