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…
Ah here we are again – bright and early on a Monday morning. I’m the first appointment of the day – so I should be seen on time. I’m alone having left my beautiful boy with Nanny, Mummy needs to get things sorted. The team appear and I smile making a comment about it being far too early, I get a smart answer of “yes but at least I got a full night sleep”. Let the fun begin….
Myself and Chris had been talking about this appointment for quite a while. It had been the case that the level of lamotrigine in my system and the Keppra being stopped hadn’t really been going in my favour. Every time I made a reduction of Keppra my activity increased. It wasn’t just the decrease I also seemed to be having issues with the Lamotrigine – a drug I have always tolerated well. This wasn’t the case of late – it just wasn’t agreeing with me at all. It was leaving me off balance, confused, irritable, anxious and generally just not myself. It has made life interesting that’s for sure! I had also been noticing that hormones were still an issue where the epilepsy was concerned. There was a lot to talk about and I wasn’t really sure where to start, however my ever devoted and observant husband was making lists and doing his homework. It was him that pointed out that all of this was likely to be down to the meds. I was grateful for this as the side effects were a pressure that both of us could have done without. He was living with someone who didn’t resemble the wife he knows.
The first thing noted at the appointment was that my levels were sat at the very top of the scale that was considered safe, they had shot up as my liver stopped working double time. I couldn’t really afford for them to go any higher. This was the first issue I raised with the team, they listened and were understanding. The conversation turned to how it was affecting my ability to look after Noah. I went to give the standard yeah we are fine answer but realised I had to be truthful. I told them that there were times that I wasn’t steady on my feet or I have just had to put Noah down because something is brewing, or there have been times I don’t feel like I should be responsible for Pup never mind Noah. I don’t like admitting to that but I guess it’s the right thing to do because it means as a family we can take precautions to make sure our precious boy is always safe. I told the team I hadn’t admitted it to the health visitor and he was brilliant, he didn’t judge he just encouraged me to talk about my concerns. We just had a chat about safety measures again, which was really basic stuff but was also reassuring.
Then came a heated debate on drug doses. I wanted a reduction, if it wasn’t working at the dose it was where was the harm in trying to reduce it and hopefully eradicate the side effects. They were not in favour of this at all because my epilepsy wasn’t being controlled on the high dose I was on but I dug my heels in. I was willing to try it so I gave as good as I got. They relented a bit but only very slightly. They suggested dropping the morning dose by 25mg but not touching the evening dose. I accepted this was the best offer I was going to get. This was all on the condition I phoned them in two weeks to update them and also find out what my drug levels were.
We also had to talk about the influence my hormones were having on my epilepsy. It was a huge problem in pregnancy and it has seemed to continue since. The team acknowledged that the goal post kept moving, and therefore finding a new solution or at least partially controlling the epilepsy would be a challenge but they were confident we could manage it again. They talked about Catamenial epilepsy (https://en.wikipedia.org/wiki/Catamenial_epilepsy) which was something that had never been put on the table before and I had never heard of. We discussed trying to get hormones under control by taking the pill. I came away feeling totally drained and with an appointment for three months time. It is an ongoing battle and with Noah the last thing I want is my meds not working or being messed about with.
My mood soon cheered up though as myself and Noah went to the Pumpkin Ball at his Baby Sensory class (https://www.facebook.com/BabysensoryCanaryWharf/?fref=ts for anyone that wants to check it out). We have so much fun at these sessions, Anna is fab and I really notice Noahs development coming on and I love seeing him interact with the other babies. I would recommend it to anyone. Plus seeing him looking super cute as Mummys Little Monster (photo below!) was enough to melt my heart. The smile on Noahs face reminded me that getting myself sorted was all for him, and I have the class to thank for picking me up out of my mood that day, and obviously our beautiful son.
I do have to add sat here a good four weeks later, that although the epilepsy is not always behaving itself I’m feeling a lot more positive in myself, my anxiety went through a rotten patch as it started playing up again but generally speaking I feel like we may be getting somewhere. Christmas for some reason has always been a time that causes my activity to increase (big kid in me getting excited!) and as its Noahs 1st Christmas and we are having everyone to ours I am doubly excited, so I’m already trying to preempt anything and think around it.
Now when is too soon to get the tree out?!
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.