My epilepsy story

Today is Purple Day – an international day for raising awareness of epilepsy – and one of the main ways people do this is by sharing their stories. So here goes…

I was diagnosed aged 29 at a press event in Germany, which sounds glamorous, but was anything but. I was attending a trade show in Dusseldorf’s version of the Birmingham NEC – just much, much bigger. I was in a foreign place on my own, trying to find and write news stories, going to evening press events and being plied with lots of alcohol. I was stressed, I was tired, and I was hungover – my main seizure triggers ­– and I blame this triple whammy for what happened next.

I remember going into a shop to get a drink and after paying falling backwards as if fainting, the next thing I remember is fighting off two paramedics as they tried putting me in the back of an ambulance – and when I say fighting I mean it! I didn’t know what had happened, I didn’t know who they were, or where they were taking me.

At the hospital the first thing I was asked was did I have epilepsy? I remember almost being disgusted at the question – of course I don’t have epilepsy, I replied. The doctor wanted to run some more tests, but I wanted to catch my plane home that was in a few hours. Reluctantly the doctor let me leave.

So I jumped in a cab and head to the airport. I remember going through security, being really pissed off that I had to hand over a bottle of champagne I was given as a gift because of the liquid allowance rules, then suddenly I was being put into the back of an ambulance again. I was later told that a man had put is wallet in my mouth because my breathing had got really bad and I was turning blue – scary stuff.

While I waited to be seen at the hospital again, I had at least one other tonic-clonic seizure – one which resulted in me wetting myself (cringe) – and I was kept in and put on drip. Once you have three seizures you officially become diagnosed with epilepsy – I achieved that title in about five hours!

So there I was in a German hospital by myself, wishing I’d paid attention in my GCSE German taster sessions, and not knowing what the hell was going on. They ran some tests on me – the usual EEG and MRI – and started me on anti-epileptic drug Epilim. They finally told me what was going on by handing me a wad of A4 paper – it was a print out of Wikipedia’s epilepsy page translated into English!

It probably wasn’t the greatest way to be diagnosed, but it could have been so much worse, what if I had got on that plane and had another seizure?

If I’m honest all of the above could have been avoided – I’d actually been diagnosed a few years earlier during a pub lunch. A former colleague had taken me out to tell me she thought I had epilepsy after I started acting strangely in an editorial meeting – I had tried to hold my editor’s hand – which again I have no recognition of! Her partner worked with disabled children so recognised the signs of smaller partial seizures. For some reason I knew what she was saying was right, I knew I had funny feelings and daydreaming episodes, but I didn’t do anything about it. I thought my GP would have laughed me out of the door I when I’d explained my symptoms, so I left it.

I think my epilepsy started about five years before I was diagnosed, when I fainted three or four times within a couple of months, until that point I had never fainted. After the first faint I saw a GP and they told me that “everyone was due a faint every now and again” and sent me away. When it kept happening I went back and saw a different GP who took me more seriously, but he thought the problem was with my heart, not my head. I was sent for an ECG, which surprise surprise, was normal and it went no further.

Since I was diagnosed and started on medication I have had no further tonic-clonic seizures for which I am incredibly grateful. However, I continue to have partial seizures, mostly manifesting in funny feelings, but a few times a month I lose awareness of everything and will talk nonsense for a few minutes. Not life threatening, but embarrassing when it happens on a rush hour train or in a supermarket!

I have tried four epilepsy medications so far – being a woman of childbearing age makes things a tad complicated because many of the drugs can cause birth defects. Not that I was planning on starting a family, the doctors just don’t want to take any chances, they even insist I use two methods of contraception! The German doctors started me on Epilim (sodium valproate), but when I got back to the UK I was immediately taken off of it because it is one of the worst for causing birth defects, and I was put on Lamictal (lamotrigine). The doctors then added Tegretol (carbamazepine) and later decided that Keppra (levetiracetam) would be better that Lamictal.

So here I am, almost 10 years and four drugs later still having seizures, but now I’m being considered for surgery. In just over two weeks I have an appointment with a neurosurgeon at Kings and if he thinks I am up to it I will have to have a few tests to see if I am a good candidate – they will only operate if they can find a single point where my seizures start.

The thought of potentially being seizure free, drug free, and side effect free is very exciting, but the thought of having a part of my brain being cut out is a tad terrifying to say the least! I’m trying not to get my hopes up because I know that there is a possibility that the doctors won’t be able to find a single focus, so won’t be able to operate, and I know that some people continue to have seizures after surgery. Oh well, whatever happens I will continue to write about it here. Have a good Purple Day everyone!


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