They told you it was Glandular Fever?
Well A&E couldn’t have got it any more wrong. I had experienced a severe reaction to Lamotrigine that only 1% of people who take it have. My neurologist was very shocked and relieved that I had stopped taking the medication. I was feeling mentally strong and ready to battle through whatever illness was being thrown at me at this point.
I went to the neurologist this time with my friend because I had figured that my version of a ‘seizure’ was triggered by stress and being diagnosed with Epilepsy meant, I was a tad stressed. When I got diagnosed I didn’t ask any questions whatsoever as I ended up freaking out, forgetting everything I needed to ask and well to be honest, I don’t think I really knew what I needed to ask. So my friend came to support me to ensure I got as much information as possible in the appointment and ensured I asked all the questions I needed to ask.
My friend and I were waiting to be seen by the neurologist and I said “this is a crazy situation, I never thought I’d be in this position at my age, I could write a blog on this.” We laughed as we never thought I would actually do it – here we are! Oh and I’ve learnt… age is just a number.
We had prepared fully for this appointment, I had written notes on my phone of exactly what had happened and a list of questions I wanted to ask the neurologist. When I showed the neurologist the rash he confirmed that it was definitely an allergic reaction and said:
“We will just put you on the next medication”
Little did I know, those words, as anyone with Epilepsy will tell you, will be the most piercing words that would haunt me for life.
What I wanted at this point was someone to listen to what had happened over the past couple of weeks and how scared it made me feel. I wanted reassurance from my neurologist that everything was going to be ok. Instead, the neurologist couldn’t have been any more uninterested if he tried. He acted as though what had happened was completely normal. My friend would emphasise my rash which I was covered in from head to toe with “there’s not a part of her body it hasn’t covered”. It was extremely shocking, I felt like I had been in an acid attack my body and face felt burnt and stiff when the skin moved.
He kept talking over me explaining his knowledge in the field of Epilepsy rather than listening. I was petrified to try another medication given the reaction I had to Lamotrigine. This didn’t seem to cross his mind, he just wanted to move me on to the next medication and get me in and out of the appointment, which he managed to do, within 20 minutes.
Before I started taking Keppra, I had a look on google to see what people’s experience was with Keppra but my symptoms were completely different to everyone else’s on the online forums, so how could I draw comparisons? I had no choice, there were no other avenues being offered to me, I had to start taking the 2nd medication, Keppra.
I began on a low dose and gradually increased it to 1000mg twice a day. I didn’t have an allergic reaction but the side effects on this medication were absolutely crazy. I got seriously blurred vision, I told my neurologist and his response was, “it won’t be the medication, go and get your eyes tested”. I got my eyes tested and my eye sight (unsurprisingly) was fine and it was a side effect of the medication. Every time I spoke it felt like a clash of electrical signals in the left frontal area of my brain, similar to when you scratch a knife on a plate. My brain had also started to slow down, it was more difficult to get information out and it felt like some of the knowledge in my brain had been removed. I remember doing a quiz with my friends and basic questions were being asked like ‘name stations on X tube line.’ I got the tube to work every single day yet couldn’t think of a single station. I also developed a lisp and would lose my train of thought almost every time I spoke, which was incredibly annoying whilst trying to work full time in recruitment, a job that requires you to talk, all day.
Each time I went back to see the Neurologist, I would explain my side effects, but his answer was to increase the dose of Keppra. As a result, my symptoms were getting worse and worse because they weren’t actually my symptoms at all, they were side effects of the medication. The thing to note with Epilepsy medication is that you can’t stop taking it at any point as that can actually cause you to have a seizure, even if you aren’t epileptic. You have to be weaned on and off medication every time. Therefore if you have side effects, you have to ‘put up’ with them for about 2 weeks because they may just be initial side effects and then you are able to say ‘this medication is making me worse’ and then you can be weaned off the medication. Each medication you try is roughly a 6 week process, and if you have bad side effects, that is 6 weeks you have to try and go to work feeling horrendous! Unless of course you decide to leave your job after your diagnosis, which I hear is not uncommon because the process of trying different medications is incredible difficult to work with.
What my neurologist couldn’t get his head around was that I would emphasise I had constant pain, not specific seizures or episodes anymore. Those ‘seizure’ type feelings only happened right at the beginning up until I started taking Lamotrigine. He wanted me to write a seizure diary, which was impossible because I never had any ‘seizures’ anymore. I said “so you want me to write for a month I felt like ‘this’ all day, every day, for 30 days?” I knew at this point that this neurologist was not listening to me.
I spoke to my friend who suggested I get a second opinion. I called my insurance and changed to a new Neurologist.