As I mentioned in my previous blog, epilepsy in pregnancy does matter, and so this is a much awaited appointment.
I had mixed feelings about it. Firstly I felt defeated, worn down by the epilepsy and the break through in my seizures,it had been almost two years since I last had to see my neurologist.Mostly I was anxious for it to be here, I knew I would get some much needed answers. It was also my chance to take my husband along for him to ask any questions or to just put his mind at rest.
I have been under my neurologist for 8 years, and I have total faith in him, so the relief when we sat down in his office was plain for anyone to see. The first hitch was that my notes were not at the appointment. Luckily he could remember all the details he needed to. We discussed how I was having an increase in complex partial seizures. How I was finding it frustrating that I couldnt seem to control it. He suggested increasing my lamotrigine from 250mg twice a day to 300mg twice a day. A look passed between myself and my husband which the neurologist didnt miss, I was already on a high dose so I was very nervous about going any higher. The doctor didnt miss this look and went on to explain about medication levels dropping, and ordered some blood tests. He also talked us through the risk of any drug increase V's the damage a tonic clonic seizure could potentially do, he also discussed SUDEP (Sudden unexplained death in Epilepsy) reminding me how serious epilepsy can be, which has scared me a little into taking even better care of myself. He was of the opinion that I needed to be healthy for baby to be ok; I was in total agreement with him on this and agreed to the increase. He also suggested introducing a secondary drug at my next appointment if the increase didnt help. Then the Neurologist introduced the obstetrician who would be working alongside him, I liked him instantly. He realised we hadnt had our first scan and so asked us if we would like to see the baby, of course we said yes. It a very surreal moment seeing your baby for the first time, I couldnt quite connect this blob on the screen as being something
I was carrying inside my belly, and thankfully there was only one! (twins run in both our families) He said he was happy with the growth of baby and said the heartbeat was strong, which made me smile. A risk of Lamotrigine is having a baby with a lower birth weight.
Peace of Mind
I left there with an appointment for four weeks time, a prescription for the AED (anti epileptic drugs)increase, having heard our babies heartbeat and feeling like a weight had been lifted. Although one thing I would do in future would be to write a list of questions I had for the team, I was so overwhelmed by it all that I forgot pretty much everything I wanted to ask. I was also relieved that they had taken my husband into consideration, addressing us both when talking, and also slowing down or pausing to check he understood the terminology that was used. After 21 years of this I forget that not everybody is used to the jargon, and I did have to explain to him that a complex partial seizure was just the fancy name for aura/fuzzy head/absence. Since the appointment there has been very little/no improvement and I am looking to my next appointment with hope that adding a drug will bring some control. Overall I feel like Ive been thrown a curve ball, and Im at the very beginning again having to relearn everything to do with my epilepsy, especially as its changed with pregnancy. Its an isolating feeling but I keep reminding myself that Ive got this far its just a case of adapting with it.
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.