Home » Epilepsy journey: “I’ve never had a patient with your symptoms”

Epilepsy journey: “I’ve never had a patient with your symptoms”

It goes without saying that I felt that I was starting all over again by seeing a new neurologist. Nevertheless, mentally I felt positive and I had so much faith in doctors that I really believed that this neurologist would be able to help me.

Initially it was a breath of fresh air in the sense that the neurologist listened for a whole hour and asked very structured questions. Being a recruitment consultant at the time, I hate and still hate being interviewed badly. The neurologist gave off the impression that she was genuinely concerned and could also see how distressed I was from what had happened. This was obviously a relief for me however, she then said the dreaded words:

“I’ve never had a patient with your symptoms”

Neurologist

Suddenly it started to become apparent that that whatever was wrong with me, the doctors were unaware of how to treat it. This neurologist re-did my EEG and in addition sent me for a longer, 24 hour EEG with a sleep study in hospital. She didn’t want to change my medication until she had the results back from the study. However, it was going to take 3 weeks for all of this to be done as it was over the Christmas period. 3 weeks when you are seriously ill feels like a life time, I explained this to the neurologist but she couldn’t do anything to make the process faster. I got through Christmas not being able to string a sentence together, with a horrendous lisp and starting to feel very worried and anxious.

By this point I had been consistently unwell for 5 months but had continued to work in my job at a recruitment company the entire time. This is when it started to take a toll on me mentally because it began to feel as though I was going to live in pain forever. If I didn’t work, I’d have no money. I spent my whole childhood fanaticising over succeeding in a job in London and being able to create a completely independent lifestyle for myself yet I had been given this illness that just wouldn’t go away. I had no choice, I could not quit. I enjoyed my job, a lot, how could I walk away from it, that would be giving up, and that is not in my nature. So I didn’t, and every day for 3 years I would battle through the pain.

My EEG’s always came back the same ‘epileptic activity’ but “we are unsure as to whether it is actually epilepsy”. My neurologist got a second opinion herself based on my EEG results and they also thought it wasn’t Epilepsy. What was it though, if it wasn’t Epilepsy? This neurologist said “I can’t deny that there is epileptic activity showing on your EEG, but I really don’t think this is Epilepsy, I’m going to refer you to a psychiatrist to get their opinion on your symptoms”.

I went to see my psychiatrist and he did a full life analysis on me, digging deep into my childhood. At this point I was thinking well at least he isn’t trying to get me out of his appointment room within 20 minutes like the first neurologist. I went with it because I knew he was just doing his job thoroughly but felt like saying; ‘look, this has randomly just happened, I really don’t think this is because of some sort of trauma in my childhood!’

The psychiatrist diagnosed me with Generalised Anxiety Disorder, this was the first time I had ever been diagnosed with a Mental Health illness. I always knew I had anxiety, but it does still come as a bit of a shock when you get diagnosed. I often thought, ‘this is how everyone feels’ – as I had suffered with it my whole life. My psychiatrist put me on Pregabalin, whilst continuing the Keppra that my neurologist had prescribed. My psychiatrist however said:

“I’ve never had anyone with your symptoms and I don’t think that your physical symptoms are caused by your anxiety”

Psychiatrist

However, when I went back to see the Neurologist, because the psychiatrist had dug into my life story and all the traumas I had gone through as a child the neurologist really hung onto the story of my life and assigned all of this new ‘epilepsy’ attack to my childhood trauma. She said it was best that I sort out my Mental Health before pursuing any further down the neurology route as she was now adamant that it was not Epilepsy, it was my unaddressed Mental Health that was the problem.

So..

Neurologist convinced my case doesn’t sit in the neurology department.

Psychiatrist convinced my symptoms are not from Mental Health and I needed to continue down the neurological path.

Two conflicting opinions, leaving me nowhere to turn.

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