Neurology Appointment
Three weeks after my initial neurology appointment following having Noah I was back again. For the first time in months I went alone. It was a weird feeling but I needed to get out alone and what better place to be heading than to the neurology team! On the whole there had been some improvement with the epilepsy (Noah was just over four weeks old). I had slowed down the decrease because of lack of sleep, I was worried about the effects the decrease would have on me as it is a huge trigger for me, and now more than ever I knew I had to be fit and healthy for Noahs sake. I always knew having a baby would mean sleep deprivation but I was trying my hardest to manage it as best I could. So I went against the doctors suggestions of how quickly to reduce the Lamotrigine, in my case I slowed down the decrease, thinking I knew best. However I was still feeling dizzy and “drunk”, this was where I got a bit of a slapped wrist from the epilepsy nurse. He informed me that I was feeling like this because my hormone levels were dropping and the lamotrigine levels were rising, and I needed to do it at the speed suggested to make sure the levels didn’t get too high. He sent me off for blood tests to check my drug level, I hate blood tests, so last time I won’t do as I’m told.
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Epilepsy awards
One of the positives that come following that awful day was Faye had been nominated for a Young Epilepsy award. I think focusing on going to the awards kept Faye sane and gave her something to focus on. It was an amazing night and the stories were so inspirational and it was good to hear others experiences. I was so proud of her for being nominated and then short listed, and although I was disappointed for her that she didn’t win she will always be a winner in my eyes and my champion. Epilepsy affects all
In keeping with the theme that epilepsy affects whole families and not just the person with epilepsy, and I think it is fair to say this trimester has taken its toll on Chris too. This is the first of a two part entry covering the second trimester, lining up with my entries as much as he could. Epilepsy debate I sat down to watch this with Faye and it took us a while to go through it as she was taking notes the whole way through it. I was really pleased that epilepsy was getting some exposure. My first surprise is how much the local governments were failing to meet NICE guidelines, and the variations in care depending on where in the country you were. Invitation
One afternoon I was spending the day doing not very much and an email landed in my inbox from Epilepsy Action, “The EMPIRE team at Queen Mary University of London have recently completed a Delphi survey, Defining core outcomes for clinical trials in pregnant women with epilepsy (E-core). As the next step, they are going to hold a consensus meeting between different stakeholders, to finalise the results before publishing them. They would like to invite you to attend the meeting as a patient representative, to help them gain more insight from the survey results." |
AuthorMy names Faye, mostly known for being a tea addict, swimmer and now Paralegal and part time student. I'm 36, married and I had my 1st (and only) child in June 2015. Oh and I also happen to have epilepsy. This is my story of Pregnancy, Motherhood & Epilepsy and the voice I have become for those with epilepsy. Archives
December 2022
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