I've felt so awful in the run up to this appointment that its only today, the day of the appointment, that I have thought to sit down and write a list of questions. At the last appointment we discussed adding another med if things were no better. I am really apprehensive with this as I know being on more than one AED isn’t great and lamotrigine alone in pregnancy is one of the safest. However he did reassure me at the last appointment that after the first trimester the risks when introducing another med were minimal.
My options would be either Keppra or Clobazam; I have previous experience of both. Clobazam was used as a rescue med for me back in 2011 when I couldn’t break a cycle of seizures. It worked, however it made me very very tired.. Keppra I have only ever tried on its own and it was of no use to me at all but Ive heard it works very well along side lamotrigine.
I’ve done some research, but there isn't very much out there. There has never been enough research into the 'newer' AEDs. With the information I found my choices in short were:
1) Do I go for Clobazam a drug that I know works for me but according to reading I’ve done comes with higher risks. One risk is that that if used long term and in the third trimester that the baby may become dependant. On the otherside I know it reduces my seizure activity, the risk of tonic clonic seizures and therefore would be beneficial for both me and baby.
2) Or do I go for Keppra, a drug I have had no success with previously but used together with lamotrigine is considered safer. But by taking chances on this drug I am potentially exposing baby to a drug that won’t have any impact but still exposes them to possible risks?
3) Or do I just refuse any extra med and run the risk of tonic clonic seizure.
I have a few hours until the appointment and still no idea what I want to do. My husband and I are on different sides of the fence. He is in favour of adding Keppra, he says Clobazam turns me into a zombie and makes me not myself, which understandably he doesn’t like. I however have confidence in Clobazam and don’t want to waste time with Keppra when I have no proven success with it. Its selfish but I’m the one who is living with feeling ‘funny’ day in day out and I just want to feel better, if that’s at the expense of being drowsy so be it. I’m hoping the neuro will guide us and then we will both have an opinion on what we prefer, lets just hope we agree!
The first thing to come out in the appointment was the result of my blood test, my lamotrigine levels had dropped and were very low. I had a reason for the seizure increase, silly as it sounds that made it easier to cope with. Then the neurologist told me his plan. He explained that knowing I had always responded well to an increase in lamotrigine he didn’t want to introduce a secondary drug at this stage. He is confident that with an increase of lamotrigine alone my levels should improve and I should gain better control again. Well this was one option I hadn’t considered. I felt nervous at the increase, wondering how my body would tolerate it, but also relieved. I still didn’t like the idea of a second med, yet again he reminded me that the risks of a second med were lower than the risks of a tonic clonic, that was me told. So now I am starting the gradual increase from 300mg twice a day to 350mg twice a day. He also reassured me that he had full confidence that I would gain seizure control again once baby was born. Then we had our chat with the obstetrician, covering how sick I had been and how dizzy I felt, who said pregnancy was glamorous! He then did a scan, and finally someone said to me they were happy with the size the baby looked! He also told us the babys heart beat was strong and that they were very active - so he was happy with the progress. I discussed my concerns with him that came about from the 12 week scan (see blog 4) and he answered them all, reassured me and not once made me feel I was being neurotic or silly. (I will cover these in a future blog). Both the neurologist and obstetrician explained that the biggest risks to a baby who is exposed to lamotrigine are: spina bifida, cleft palet and heart defects. They explained the 20 week scan would cover the first two, but ordered a fetal echo to do a more detailed examination of the heart. They also told me they would be seeing me monthly due to low med levels and lack of seizure control, this reassured me greatly. I came away again happy with how the appointment had gone.
However I can’t shake the feeling that something is ‘brewing’. Those reading this with epilepsy may identify with that feeling that your body is building up to a tonic clonic seizure. It’s an odd feeling and one that you cant explain (sorry!). It’s also scary and unnerving. I’m just hoping the drug increase works before it gets that far.
What would you do?
On all the above information Id be interested to know what you would do? I don’t mind if peoples opinions are different to my own - just trying to open up healthy debate :-)
Get in touch:
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.