So two weeks ago was the first time I saw my neurologist since I had had Noah, he had popped in during my appointments with my epilepsy nurse but this was my first appointment with him directly. I had a huge list of stuff I needed to talk to him about, mainly keppra, which was destroying me and my relationships with people closest to me.
I had no choice but to take Noah with me to this appointment, I had been hoping I wouldn’t have had to because I needed to discuss things but this didn’t end up being the case. Thankfully he slept through most of the appointment before waking at the end giving my neurologist the biggest smile and chatting away to him whilst he was trying to do his dictation, we did joke that it was because he recognised his voice.
However, it wasn’t all smiles, I walked in we did pleasantries and he asked me how things were…I promptly welled up. I have NEVER cried in front of this man, no matter how bad things had gotten during pregnancy, no matter how hormonal I was, I had always held it together (well at least until I left the appointment). I was mortified and he asked me to tell him what was going on, was it the epilepsy? My honest answer was no; it had really calmed down with the most recent increase of keppra. I had few blips of late, the most recent being the day before the appointment, as I mentioned in the last blog. Needless to say I got a stern look but he was not one bit surprised at what I had done in carrying on, although he has always been cautious he had always been supportive of my running knowing what a stress (which is a trigger) relief it was for me. None of the recent incidents were things that I couldn’t cope with, in fact compared to the last year or so I was almost giddy with excitement, I mean I am never going to get a driving license but we were doing ok.
“So if the epilepsy is better what on earth has brought you in here like this? This isn’t you.” Keppra, ah that bloody med again. So I started to explain to him everything I was going through, I will highlight them all and go into more detail of some. Most of these when I was pregnant I put down to pregnancy (hormones, tiredness, more weight = joint pain) I explained the tiredness (quite common on AEDs), joint pain, the anger (I’m surprised I’m not on a murder charge), being super emotional, having no patience, paranoia (my latest being that Noah is going to crawl into a washing machine or tumble dryer (sorry Steph!) and die or his buggy will roll onto the tube track!) feeling completely detached from my life. He confirmed what I thought that it was all the side effects of keppra and then looked at me and said AND? I had two options here 1) smile and say that was all or 2) be more honest than I had been and tell him things I hadn’t even told Chris (and didn’t until I started putting this blog together.)
Option 2 it was then. I think I am going mad, well and truly bonkers and it scares the living life out of me. I am losing the plot. Every bit of patience and energy I have goes to Noah but I admitted to him that I am frightened I am frightened that patience will run out. I am not me, I don’t know who I am and this is all because of one stupid med! More than that there are the thoughts, I talked about the stat last time that those with epilepsy are 22% more likely to commit suicide than those without the condition and for the first time in my life I could really understand this, believe me not for one second have I considered this or wanted to hurt myself in anyway; but the negative thoughts, anxiety and black cloud that have followed me around since keppra got into my system is frightening. It is breaking my heart, I didn’t trust my own judgement and I didn’t know myself anymore. To be blunt I am not even a very nice person lately.
When I finally took breath he looked at me and said ok time to get you off of it, to be honest my opinion was he would reduce it, apparently not. He explained his duty of care and with how low and all over the place I was he could not let me carry on taking it. I said to him that I felt like an awful Mum for saying it all, but he very kindly reassured me that it just made me human and said how happy and well looked after Noah is, he will never know what a difference that made that day. He talked through three different drug options I am not even going to lie I did not hear a word he said. He asked if we had any plans for baby no.2, after I finished laughing I managed a firm no. Having not listened I asked which he suggested, his choice was Zonisamide. I asked about side effects, he said it would make me tired much the same as others and could possibly cause a bit of anger but nowhere near the issues I had been having, it may cause me to struggle with word placement (apparently quite common on this med) but as I had tolerated Lamotrigine well there had been studies to show people then tolerated Zonisamide well.
He also advised me against pregnancy whilst on this drug as there was insufficient evidence or studies to show what the effects would be on an unborn baby never mind that for a period of time I would be on three AED’s at one time. Him addressing this as a routine part of my appointment alone shows how far things have come since I fell pregnant with Noah, so I was pleased about that and the impact this will have for women with epilepsy wanting to have children in the future. As we were discussing my running I asked him if the joint pain would go away once off keppra, he confirmed it should. He asked how much I intended to run again if the epilepsy would allow and decided to tell me that people with epilepsy are more prone to developing Osteoarthritis (brilliant!) so he wanted to start me on a calcium and vitamin tablet to take indefinitely although he didn’t want to put me off of running.
So the plan is my Lamotrigine will remain unchanged working away in the background, slowly introduce Zonisamide (I will learn to say that) until I am on 200mg each evening and slowly reduce the Keppra until it is gone. It will still be mid/late September before I am off of this God awful drug but I guess I have got this far a bit longer won’t kill me, except I have a genuine concern it will tear me apart before then, I cannot do this anymore, there has to be light at the end of the tunnel but to finish with a quote that says it better than I ever could...
My names Faye, mostly known for being a tea addict and keen runner and swimmer. I'm 32, 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.