It was that time again, routine appointment with my epilepsy nurse, for some reason I was so unbelievably nervous about it, I don’t know why because as far as I was concerned nothing was really going to change.
My epilepsy still hadn’t been great even though we had come a long way, I had been using the patient app which meant that all the information I was inputting was being fed straight back to my neurology team. For once I have a detailed record of my seizures, time, date and type, this proved to be useful. We could see a pattern, seizures and activity tended to coincide with Noah not sleeping very well – as ever sleep deprivation was a huge issue for me. What was interesting, and what I did not realise until we were going through the data, all my seizures/activity were late afternoon early evening, I have no idea what that means!
I thought that we were going to just leave things as they were, as in yeah drugs are doing a good enough job, the seizures aren’t as bad as they were if you can manage it we will leave you be and its just one of the, things, you are one of the ones meds don’t work for. I was in for a shock, he then told me that he would like to reintroduce Keppra, I was not expecting that, he nipped out to speak to my neurologist and he was in agreement. I am not always a fan of Keppra, it made me feel tired and ratty in pregnancy but at the minute I was willing to give it another go, who knew how my body would react to it whilst I wasn’t pregnant.
Although I have no intention of more children we had a chat about how things would work if I were to fall pregnant because we seemed to spend 8 months chasing the epilepsy. He said that I would be taken off of one of the meds because it is safer to be on one and on lower doses, which made me happy to hear, it seems the information they are giving out has come a long way even since I had Noah. He also said that they would test my drug levels from the off so they knew the minute they started dipping. He made more remarks about how I was such an unusual case and the worst he had seen, that my liver was processing the meds faster than they could work. As I said that is not even something myself and Chris are considering but it was reassuring. I also had a chat with him about changing GPs and address (finally confessing after four years) pleading with him not to make me change hospitals. He said that wouldn’t happen because they were all the same trust, he also told me that he and the other epilepsy nurse at that hospital were the ONLY nurses for the whole entire trust!! Given we live in London that is shameful, although I know I am lucky to have one because there are plenty of places in the country that do not have one at all, it makes me angry. He also confided that quite often the hospital nearest to me would just refer patients with epilepsy to my current hospital, no wonder they were over worked!
My dear did I come out of there annoyed and upset. I left with a prescription for the Keppra and a slow increase med plan. Chris phoned to see how it went and I couldn’t even talk to him, I was so disheartened. To me having a second med added was like taking a step backwards, I feel like I am constantly battling with the epilepsy and I am so bloody sick of it, why can’t it just do one and leave us alone. I have to apologise to anyone here that come across me on that day because I was in a foul mood and having a right sulk. Deep down I know that this may be the game changer and it may control things but I was just so annoyed at having to add a second med.
Keppra Rage and side effects
Oh this was where the fun started, and it coincided with us going away for a short break. This was both a blessing and a curse, it meant Chris was with me as I was reintroducing the Keppra but it also meant it had an impact on our holiday. I spent a few afternoons in bed sleeping because I was so tired (Keppra is notorious for making people tired) but then hated that I was missing out on time with Noah and Chris, however I could not function at all. I have also been unsteady on my feet and so short tempered and ratty. After a bit of research and talking to people I have found out this is known as ‘Keppra Rage’ (that is an actual term!) I have been fuming this week, like a pot about to bubble over with no reason at all, we have been away having a great time. I have spent a lot of time counting to ten, I have tried to run if I could just to try and help with it. People have also suggested B6 vitamins and Magnesium to help, so that’s one of the first things I am doing when I get home. Chris as ever had the patience of a saint, and I know it was hard for him, so once again I am sorry. I know I need to grit my teeth and wait and see what happens, the drug plan is a very slow increase so I am hoping that this all subsides pretty soon. Keppra is a good drug if you can get through the side effects. All of this also happened to be at a time Noah is not sleeping (blaming teeth again) and that has made me struggle, I was barely functioning so thank God for my husband. I have felt like such a useless Mum and wife, I think I have apologised a million times to Chris and I feel so guilty but I just have to accept that’s life. It has also disrupted my running at times which I am not happy about as I was just getting back into it, but you have to realise it would be bloody stupid to go out when I feel the way I do.
I am due back to the Neurologist in July so all I can do now it wait and see what happens. I have my fingers and toes crossed that this starts doing what I want it to. I have felt worn down recently by the epilepsy, but I refuse to stay down. It is hard, really hard but I know that I have to dig my heels in because whilst I may have lost the most recent battle I refuse to lose the war.
My names Faye, mostly known for being a tea addict and keen runner. I'm 31, married and I had my 1st child in June 2015, oh and I also happen to have epilepsy. This is my story of Pregnancy, Motherhood & Epilepsy.