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Getting Diagnosed

Is it a brain tumour? Is it epilepsy? Or had I made everything up in my head?

When I initially went to see the neurologist I was my typical self (happy), I can never seem to act ill, even though I am ill? Does that even make sense? 

I explained my symptoms and he said it was very unlikely to be Epilepsy but was happy to rule everything out for me. He booked me in for an EEG, ECG and an MRI to rule out a brain tumours. He said the most likely case was that I was fainting. I assured him, I was not fainting. 

I did the MRI that same day and suddenly things started to feel real. That loud churning noise going round and round with the light sound of music they ask you to choose, when all you can really hear is – is it Epilepsy, is it a Brain Tumour or am I really mental, have I made it up in my head like I felt he was implying?

I did a 45 minute EEG, but it takes a while to stick all the wires on. I honestly thought I was going to be electrocuted, it looks so scary but it doesn’t hurt at all. However, I did get the feeling, like I did all the time of electric shocks going through my face down to my teeth the whole time. I was so eager to find out whether or not I had Epilepsy but the EEG technician can’t tell themselves, they have to send the EEG off to get read by a specialist in reading EEG’s. What she could say was that I didn’t have photosensitive Epilepsy (when they flashed a light in front of my face nothing different came up on the EEG). I was very relieved as I am a huge music fan and would have been gutted to not be able to go to music events any more.

The ECG was 24 hours which they stuck on my chest and then I took it home. It was really annoying and uncomfortable but I saw it as a tick box exercise, I just wanted my results from the other two ASAP.

Results day had arrived, I went into the Dr’s room and he rambled on for a bit… I was being polite but just wanted him to cut to the chase…eventually he did:

“You have Epilepsy”

My stress levels obviously rose at this point. I thought:

What do I need to ask? What does this mean? Am I going to be ok?

This is when I identified that a ‘seizure’ (I’m still not entirely sure what a seizure is for me) but my version of a seizure was triggered by stress.

Everything went blurry, my jaw was locked, colours were flashing everywhere in front of my eyes, I started hallucinating, the room was breaking down into different shape, I couldn’t hear at all what the neurologist was saying and I couldn’t think of anything to say. When I did talk my words were slurred and disjointed and it was sending so much physical pain to the left frontal side of my brain, as though a knife was being stabbed mixed with a firework being set off. All I knew was that I had to leave this room as soon as possible.

The neurologist gave me medication, lamotrigine, explained that I would be taking it for a minimum of 5 years, told me I couldn’t drive for 5 years minimum (I can’t drive anyway but I didn’t like having the option being taken away from me) and told me to come back in 4 weeks. He said he knew there was a lot to take in, gave me his card and told me to email me if I had any questions.

Just like that, I walked out in Central London with a life changing diagnosis, a piece of paper with medication I had to take for 5 years and I couldn’t see the pavement properly to try and walk home.

But everything will be ok right, I’ll take this medication and I’ll be back to normal?

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