Wednesday, August 28, 2013

Being a mum with epilepsy

I have had absence seizures since about 17 years old, we don't know why they started but one day as I was locking my bike up at college I wondered how I had got there. I'm sure there were other things that happened that made me go to the Dr but my memory is bad and I don't remember them now. I remember seeing the consultant at the hospital and having an MRI scan and being admitted for what is now called video telemetry (it was called a cassette EEG in 1996).  I remember staying in hospital quite clearly and was hoping I would never have to be admitted again as I did not enjoy the experience (old hospital, horrible food, toilets that didn't lock, that sort of thing).

My absence seizures at the moment happen about 4 times a week, sometimes I can have about 6 in a whole cluster almost one after the other until I have a nap. Others it's a one off and I'm back to normal except for missing the 30 seconds to 4 minutes that I have been having a seizure. I don't fall to the ground, I just stop what I'm doing for a moment, some people don't even know I'm having them if they are short. I'm aware of what is going on around me, I can put a book mark in the book I'm reading or go find a seat to sit on. Sometimes one or both arms will shake but its not a whole body violent shaking.

I was put onto carbamazepine in 1997, this worked fine for a good number of years, I was happily seizure free but slowly over time they appeared again so in 2004 I went back to the Dr and referred again to the consultants, it took seeing a number of different registrars for me to convince them that I had become immune to my tablets but got there eventually. In 2005 I was put on lamotrigine and was again seizure free for some time. I was on lamotrigine whilst pregnant and had a very healthy little girl, Princess C. Until 2009 when again they returned and referred again. I saw a great registrar (a good one makes a huge difference after all the rubbish ones I have seen) who really listened and instead of increasing meds switched me to keppra and again my seizures stopped. That is until 2012 when again they came back. My Dr increased meds due to the low dose I was on but this made no difference so early 2013 I was back to the hospital and saw a new consultant. She is really excellent and decided that we will go back to the start and have the tests retaken but add in a new tablet, vimpat, on top of the keppra.

Sadly the vimpat just did not work for me, it made very little difference to my seizures and the side effects were dreadful, I don't know how I made it through some days I struggled with talking, finding words, I had no want or desire to do anything and made mistakes on some of the easiest tasks. After a few desperate calls to the specialist epilepsy nurse at the hospital I came off vimpat.

So this year I have had another MRI scan and went for an outpatient EEG (they stick metal disks to your head and measure the electrical activity). Sadly the outpatient EEG didn't give the consultants quite the answers they were looking for so in August I went for an impatient VEEG (video telemetry). Thankfully I managed 6 seizures over the 5 days I was in hospital for and so didn't have to stay in any longer, and the experience was so much better than last time. The west wing at the John Radcliffe Hospital in Oxford has purpose built rooms and wonderful staff. It's not fun having disks stuck on your head for 5 days and being videoed 24/7 and not being allowed to leave the room but hopefully if the results are good they will be able to find me a better medication.
This blog post explains really well about what having a VEEG is like with photos.

It's still a waiting game, I'm still on meds that don't work, I'm now waiting for an appointment at the memory clinic and will hopefully see my consultant in a few months to see where we can go from here. Being a female of child bearing age also makes a difference to medication, I've done the "safe" medicines so now the options left are those that are untested or not suitable for pregnancy so epilepsy has made the decision for us to only have one child. A hard one to accept at times.

So how do I cope as a mum, I just do but with a lot of support from family. I don't let it rule my life and I try not to let it stop me doing things. ReaditDaddy and I have always been open with Princess C (who is 5) about my epilepsy and both of them can tell when I'm having even the shortest of seizures, as Princess C has got older she has understood more about letting me rest when needed or taking something off me if I'm holding a cup for example. It's rare for me to have them outside of the house or office. It's like something inside me will hold them off until I'm in a safe place... not always though. The hardest thing I find is not the epilepsy it's self but my memory. Events and conversations new and old that I just can't recall. I can't drive and probably find this the most frustrating bit (which means I rely on ReaditDaddy and buses a lot), I shouldn't really go swimming by myself or with just my daughter. But I often think of the things I shouldn't do after I have done them!

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