So here we are 20 weeks in, can you believe its half way, and it is time to see the Neurologist again. Honestly I am starting to see this man more than I see some of my own family and friends! Chris is working so I have asked my Mother in Law along so she could see the baby when they scan.
Where we are now
I have gone back to the old school method of keeping a diary of any seizure activity. I have done this because when it came to the last appointment I missed things out or forgot things, and with there being a lot of activity Im struggling to remember things and am getting confused. I also have been writing down questions as things crop up.
I think for me personally I have come to the stage that I have accepted that for the foreseeable the seizures aren’t going anywhere. I have also come to accept again that meds don’t work in every case and about 30% of people on AED’s still don’t gain control, and right now I am in that statistic (thank you Epilepsy Action for the figure). As much as I don’t like it I am ok with that for the time being.
What does my diary show? We have gone from daily to every other day. That is not to say it is ok, because I spend the days in between recovering from it. For anyone who has limited/no knowledge of epilepsy it doesn’t mean it is better because it isn’t daily - just different .The seizures are now coming in clusters. It’s the thing that frustrates me the most, not being able to predict a pattern.
Last Tuesday whilst at the theatre I had an episode, and it frightened the life out of me more than anything has in a while. Now I have to say thank you to my friend Alex, because as I was starting to panic at the thought of causing a scene and worrying about what was going to happen she barely batted an eyelid and made no fuss at all which helped me no end. It is that sort of calmness that you need. But why on earth after 21 years of this do I still worry about causing a scene and what other people will think! The only benefit of this episode was that it appeared to clear my head for a few days.
However it did leave me with this question. I know partial seizure activity can do no damage physically to baby, but does it distress them at all? I only say this because as I was back in my seat and calm I could feel baby moving a lot, and it’s left me wondering how they are affected by this sort of activity.
It didn’t help that on the day of the appointment I was feeling very fuzzy headed, luckily Chris had managed to also join us for the appointment. We walked in and there were two males I didn’t recognise. They were quickly introduced as the new epilepsy nurse (finally I got to meet him) and another obstetrician. I warned them they would have to go slow as I was having problems processing things. We went through a general overview of how I was doing; the diary came in very handy.
My first question was about the baby being distressed. The obstetrician reassured me that it was unlikely to distress the baby, which made me feel better after the episode the week before.
I then began talking to the new epilepsy nurse. Now I’m not going to lie I was sceptical. It is no secret how much I loved my old nurse and whoever was taking over had big shoes to fill, but I liked him instantly. My first question for him was how high were they willing to take the lamotrigine. I asked him what was considered a high dose, his answer 250mg per dose; I laughed and said that was my dosage before pregnancy. He then looked at my drug levels, and to all of our shock it had dropped AGAIN and I was now sat outside of the safe zone. I may as well have been eating smarties for all the use this level of meds were. I think Chris and I mirrored each others expressions as the shock registered. It was at this point the nurse said he was going for my neurologist.
He came in with the usual obstetrician and asked how things had been. After telling him he started talking about a secondary drug. His choice was Clobazam. I felt Chris instantly stiffen beside me. The Neuro knows I’m in favour of it, so he turned to Chris to talk through his concerns. The Neurologist explained that using Clobazam as a secondary med rather than as a cycle breaker meant the side effects would wear off and I wouldn’t be as drowsy all the time, this reassured Chris. However he then asked the nurse what my drug levels were and his face mirrored mine and Chris when he realised just how low they were. Based on that information, he decided a further increase would be necessary. He explained that although I was on a high dose of meds the amount in my system was tiny, so the number on the box didn’t matter as it wasn’t a true reflection. This makes perfect sense but it’s hard to process. I mean how high do you go before you accept my body isn’t going to tolerate the AED whilst pregnant? Also given the low drug levels and the incident the week before there were now very real concerns about a TC seizure. So the neurologist suggested the increase of Lamotrigine but also to use Clobazam to break the cycle as and when needed, to give myself that little bit more reassurance and support.
When discussing the use of Clobazam the neurologist said there isn’t a lot of research into the effects of it but there haven’t been any horror stories. I laughed at this, it just highlights everything that I have been saying and the whole reason that I’m doing this blog. There isn’t enough research into AED’s and the effects in pregnancy! This really has to change it is not good enough!! No horror stories isn’t exactly a cast iron recommendation but I realised I was at the point that I needed to try something different, as my body was processing lamotrigine faster than I could absorb it.
I raised concerns again about the effect of Clobazam on the baby, my obstetrician acknowledged these and said that yes baby could come out needing some support breathing (just what any mum to be wants to hear) and they could also come out a bit floppy due to the effects of the drug (much in the same way it makes me drowsy). He told us that if I continued to use Clobazam then there would be a detailed plan for the team who would deliver baby so they knew what to expect. He reassured me that weaning the baby off the meds wouldn’t be as bad as I feared.
So my poor mother in law has sat through all of this, we get to the bit that I want her to see....and the baby lays with their back to us! I wonder where they get the awkward streak from!! It had been a pretty hectic meeting with the epilepsy nurse, two obstetricians and my neurologist all talking and giving opinions. I could hear Chris during the appointment checking that his mum was following things or explaining terms he thought she wouldn’t know. Thankfully my team, as ever, were amazing in making sure that everyone followed. My mother in Law, came away feeling that she understood everything they had said because they took the time to explain it all, and she was as enthusiastic about the team as I am! I am very fortunate with my neurology team, and having someone there who has never seen them before has reminded me just how lucky I am. I know other people haven’t been as fortunate, and again it’s the difference in care across the country when it comes to epilepsy - it really is hit and miss.
My neurologist continues to remain positive that if we can increase the meds in my system that we will have control again and I have to just believe him when he says that or I would drive myself mad. I must admit I came out of the appointment and had a bit of a cry. More out of frustration than anything, just wishing there was a way to balance everything out. It had come as a shock that the drug levels had dropped again. They have taken more bloods again and I have an appointment for four weeks time to review everything. I was grateful to have Chris there because he remembered things I had again forgotten to tell the team, and with not being at my sharpest it helped to go over it all again with him after the appointment when my head was clearer. There really is no accounting for when epilepsy will play up.
This entry is a bit heavy going as I’ve tried to condense down an hours appointment into just one entry. If you have any questions about anything I’ve said or would like me to clarify anything please get in touch:
In the run up to Purple Day on 26th March Epilepsy Research are running their 1 in 103 campaign. 1 in 103 people in the UK have epilepsy.
Sooo they are asking that when posting on facebook/instagram/twitter if there is ANY purple in the picture can you use the hashtag #1in103 so they can collate lots of purple piccys and raise a bit of awareness. Heres me and Chris on holiday back in 2011 following a rough spell with the epilepsy . :-)
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.