I am so behind in posting lately! I have a line of entries ready to go up, I keep writing but forgetting to share. My epilepsy over the last two weeks has not been great, I’ve had to cancel meetings I had planned for a long time, but as I sit here adding this we have had a good two days (so fingers crossed!), in other exciting news – last week I took Noah for his first swimming lesson and he LOVED it! So bringing you up to speed…
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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. Before
The four weeks since I had last seen the team had been four of the easier ones in terms of the epilepsy…I’m not saying it was great but I was doing ok, it would appear the med increase was finally doing something. I had a few days the week following the appointment where I felt like something was brewing but nothing came of it. I did however spend quite a lot of time in bed napping as the drug change was making me very sleepy. The week before this appointment Chris and I took the opportunity of no medical appointments to get away for two nights, not anywhere far, but just a bit of seaside fresh air. We remembered to pack the maternity notes so that there would be no mad dash if anything went wrong. But for once all went in our favour. I had auras both mornings we were away but neither amounted to anything. So it was a good break and it was lovely to spend some time being just a couple rather than everything being one medical appointment after another. However the pregnancy sickness hasn’t been any better in fact it has got worse again, lucky me and Chris! So much has happened in the run up to this appointment that I have barely had time to think about it. Chris is on his best friends’ stag do – a much needed break, but it means he won’t be with me on the day.
We did sit down and have a chat shortly before he went away, he gave me his opinion of how he thinks things have been. He doesn’t think things are any better, and he is well aware of how tired the Keppra has been making me. I also raised the point to Chris that I don’t think the last four weeks have been a fair judge of the introduction of Keppra, which he is in agreement with. I have been under a lot of stress and my sleep has been disturbed so both auras and absences have increased. However this always happened no matter how well controlled the epilepsy was if I am tired or stressed, so like I say Keppra hasn’t really been given a fair chance and I think my opinion would be to give it another month and hope things in life settle down on a personal front and therefore the epilepsy will also calm down. I have also been being sick quite a bit again so I haven’t really stood a chance. I am tired, really flipping tired. I have also been suffering with heartburn which has meant I have been up several times in the night, again not great! So does this – my epilepsy - matter?
Ours wasn’t an unplanned pregnancy, but thanks to my very good epilepsy nurse, I had started taking 5mg of folic acid since December 2013. My nurse has been amazing, but I was shocked at how little information and support there is available for mums-to-be with epilepsy. I had millions of questions – but nowhere to turn for answers. I don’t know one other mum or mum-to-be with epilepsy. I also found that my epilepsy did matter. No sooner had I done the test when the morning sickness started and my epilepsy got worse. My GP (who is amazing) has given me some anti-sickness tablets. This is to prevent sickness and help me to keep my meds down, pretty important in controlling epilepsy. |
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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