I was nervous about this appointment, as I hadn’t phoned the team to tell them about my TC just after our last appointment. My reasoning being that I had only just had an appointment and was on an increase/introduction of the Keppra so what else could they do? Two TC’s in six weeks was the worse I have been since childhood, and I was feeling very out of my depth, so I was relieved that Chris was back for this appointment with me. Just under three weeks earlier there seemed to be some improvement in my seizure control. I also had questions for obstetrician about the baby and the impact falling on my stomach repeatedly would have.
Surprise in waiting room
We were sat in the waiting room just chatting between ourselves and the lady next to me turned and asked if I was Faye. I answered yes whilst racking my brains to work out where I knew her from, I was drawing a blank. She introduced herself, this was a lady that had got in touch with me via email after finding my blog online. She was trying for a baby and was getting little/no support from her local hospital, so based on conversations we had had regarding the team at my hospital she pushed for a referral to the hospital I am treated at. She saw both my epilepsy nurse, neurologist and obstetrician and although they were unable to treat her due to where she lived they did point her towards the best hospital to help her where the set up was the same as it is at my hospital. She said the neurologist was really helpful and sent an email directly. She told me that she had told the neurologist that without my blog she wouldn’t have known about all the help that was out there. So I now know my neurologist knows about my blog, if he has gone out of his way to find this, thank you for everything and sorry for not mentioning it :-)
I saw her as she was leaving, and she thanked me for my help, I was so unbelievably proud and have to admit I got emotional. The fact I have helped one person has made my day and means this is all worth it. We are continuing to keep in touch via email so I know how she is getting on.
I have to say this was the most positive appointment I have had. Chris said I seemed very nervous, and I was but only because I feel well and truly out of my depth. I am scratching my head at where we go from here. We had a chat about the fact I had had another TC and how I was feeling generally, I explained my partial seizures seemed to be coming under control a bit more, but obviously two TC in six weeks was not good by my standards. My neurologist then went on to say something that made complete sense at the time but I’ve struggled to put coherently on paper since, so I am going to use Chris analogy. The neuro said that the fact the partials were coming under control and I seemed to only be having TC’s was a good thing…confused? So was I.
However as Chris managed to explain it afterwards when I tried to repeat it to my sister and parents, he uses the “dripping tap” analogy. The partial seizures were like the drip from a tap but now they are being controlled it means the tank fills up and will overflow (which is the TC’s). Makes perfect sense, and I can see why this is an improvement, we are bringing one aspect under control and now it is just to deal with the TC’s, which hopefully once baby is here will come under control anyway.
The obstetrician did reassure me also that baby was well protected inside me so try not to worry too much about any falls or TC’s.
The Keppra seems to be working for me as things stand and there is a possibility that once baby is here Keppra will become my main or only med. However it does make me very very tired at the moment.
As my next appointment falls at 36 weeks pregnant both the neurologist and obstetrician were looking towards labour and drawing up my birthing plan. I am both nervous and excited about this.
Since the appointment I have been really rough, hence why it has taken me almost two weeks to write this, I have spent most of the time in bed and had to cancel lots of plans again, and had numerous days where Chris has had to shift plans to be with me. :-/ The drug increase is making me tired, the sickness is worse again and the epilepsy is being a pain, something is brewing and I feel like a ticking time bomb again.
The neurologist talked about Clobazam in labour, and I have since come away and researched it, but as per anything pregnancy and epilepsy related I am not finding very much at all. Although I have to say Epilepsy Action have been fab in trying to give me all the help they can or point me in the right direction. But again if the research hasn’t been done in the first place all you can go on is people experiences, and everyone is different.
Baby shower: Positive Note
To end on a positive on Sunday 10th May my sister and friends threw me a baby shower. I’m not normally the biggest fan of stuff like this as I’m superstitious, however having the start to the year we have had it was lovely to be surrounded by friends and family for happy reasons and just to spend time with those I love. After how tough the pregnancy has been it was a nice to sit down and appreciate that we are actually having our first child, and to get excited about that whilst forgetting all of the medical stuff that has come with it. I had a really wonderful day, Baby Waddams was very spoilt and I got some much needed time with some of the people I love most. I am so grateful to those who came and to the girls who organised it, thank you ladies.
National Epilepsy Week: 17th – 23rd May 2015
As its National Epilepsy Week I wanted to promote my brilliant friend Mel’s event for Young Epilepsy…. The Great London Bake off and Cake Sale!! Details can be found here:
It will take place on: Sunday 21st June 11:00 – 15:00
At: Cherry Tree Café, 25 Woodbine Place, Wanstead, E11 2RH
So come along and enter, or if you are anything like me just come along and eat cake. :-) It will be a brilliant afternoon.
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.