Not the original plan
This post was not meant to be from me, it was meant to be from Chris perspective. However theres a subject I feel I need to touch on whilst it is an issue. Apologies if this post is rambling but its a reflection of where my heads at at the minute.
The truth? Im struggling.
Believe me that one sentence is not easy to admit to, however after two lots of tears today to both Chris and Steph (my sister) I feel like
its a subject I need to address. Firstly I want to say thank you to them both. I know they are both living with a shell of the person they know and love but both have unlimited amounts of patience with me. I actually have tears as I write this because Id be lost without them, and the public acknowledgement of what they do is only the start of the way I can say thank you for everything you both do.
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 thought long and hard about writing this post. Namely because I was concerned about peoples reactions as its brutally honest and blunt, I make no apologies for this. This isn't to shame anyone but to highlight some comments made which show the lack of understanding of both epilepsy and epilepsy in pregnancy. Shockingly sometimes the worst comments have come from those closest to those with epilepsy.
Did you really just say that?
When I asked for peoples experiences I was shocked at how many people came forward and even more shocked at some of the comments. Out of respect for those who have told me of their experiences I have made all posts anonymous:
Time to meet baby
My hospital do things a bit differently, when you go for your first scan, you also see the midwife for the first time, and have all the routine blood tests. Sat in the waiting area I was so nervous, I dont think I still believed that this was actually happening.
We went in to meet the midwife first of all and answer the huge list of questions she had for us.This was going fine until it became clear that she had no idea about epilepsy and pregnancy. She barely glanced at the notes from the neurology appointment the week before.
she went on to suggest I may like a birth at a birthing centre. I had to stop her there and point out that having epilepsy meant I was a high risk pregnancy and this would not be possible. She carried on but kept making statements relating to the epilepsy that I either had to correct her on or ask what she was basing the statement on.
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.