Monday 30 December 2013

Temporal lobe epilepsy and memory problems

I was reading the epilepsy professional magazine and found an article which explained how temporal lobe epilepsy (which is what they are pretty sure I have) can cause memory problems and often quite specific.  They say that it can make it difficult to remember names and often specific past events… so maybe all the problems I have remembering names is more than just me being useless a bit useless.

Saturday 28 December 2013

Christmas 2013

Christmas was amazing :) having a little person around makes things extra magical.  Riley loved it; she is now at an age where she is aware more of what is going on.  She doesn’t understand things like Father Christmas but she understood something exciting was going on.  She got very good at opening presents!
When my parents first came around I think with everyone turning up together with so many presents, it was all too much and she burst into tears!  But she soon settled into it and was running around with a huge smile on her face.  She got a kitchen which she loves and loads of Duplo which is great because the train she had which she absolutely loved was getting a bit repetitive!  Now she has a zoo to go with it.
It was a lovely Christmas, mum got me a swallow necklace to remember Grandad and also got the picture my friend Jenny painted of my Grandad’s tree framed.  Christmas is always a time full of mixed emotions when someone you love isn’t there anymore, but this is our second Christmas without him and I am now at a point where I’m remembering all the wonderful memories I have of him.

Monday 23 December 2013

Horizon Church Christmas Fun

Yesterday we had our churches Christmas celebrations, my friend Emily organised ‘Muddles’ which is messy church and the hope is to reach out to families on the St.Helier estate.  It was fantastic; Riley went and made a wide range of works of art!  There were a few local families and hopefully they will tell their friends they had a good time and it will grow like that, it can be quite difficult to encourage people into a 'church'...  
Then in the evening we had carols by candlelight, we walked round nativity scenes singing a carol at each, the scenes had been painted and decorated by people at the church.  It had some very amusing moments; it made the nativity more real somehow, more on everyone’s level.  Riley stayed up for it and loved it, she has been up till 9ish a few times recently and seems to stay in a good mood and then just pass out when we put her in her cot!
I love going to our church, it feels like a true family, it accepts everyone, even if you don’t believe like Rich you are still made to feel so welcome.  My mum sort of summed it up; the people running the church are on a level with everyone else.  It’s not like they are looking down on the people they are helping.
Muddles happens once a month - the next one is Monday 26th January 2014 and is Superhero themed.  So if you fancy some arts and crafts fun come along to Horizon Church, Assembly Walk, Carshalton, SM5 1JH from 4-5.30pm. See you there!

Coping with side effects

So I have now increased my Lamotrigine to 500mg and I have to admit I’m struggling with it… I’m feeling really dizzy, not light headed dizzy but dizzy in a thick sort of way – difficult to explain!  I’ve also got a bit of a tremor started, not all the time, only when I try to do prise movements, I’ve had that before and I can live with it until June when I switch meds, but the dizziness… not sure I can cope with that.  I’m going to carry on for a few more weeks; sometimes it just takes a little while to adjust to a dose.  When I first started on Lamotrigine I used to have panic attacks at night, but they stopped after a while. It only happens in the morning, I think I need to make sure I take the doses exactly 12hours apart, rather than taking them at breakfast at about 8am and then before bed about 10pm… see if that helps.

Thursday 19 December 2013

So what now for the Meds?

So as for meds, I have put my Lamotrigine up to 500mg and touch wood seem to be tolerating it.  I have had a bit of a tremor at times, but I have had that before and I can live with it.  But I think it is time for a change of meds... the Lamotrigine has definitely made a difference, I was having them monthly and when my Lamotrigine got above 200mg they became yearly.  But since then I don't think things have changed much.

So in June when I next see the consultant I will change to Keppra.  I'm a bit nervous, I've heard a lot of negative stuff and apparently 1 in 10 people have changes in their mood... I hope that's not me.  I hope that my family will tell me if I become different.  I sort of feel that the Lamotrigine maybe helping with my mood too  I know it's used for bi-polar as a mood stabilisor, and I don't know enough about it to be able to say but somehow I feel less up and down since being on it.  I'm not in anyway saying I have bi-polar and I started Lamotrigine as a teenager when being up and down is normal.

I guess when you've been on a medication for more than a third of your life you start to question what you were like before... the side effects from medication are often negative but I guess sometime medication can help other things without you even knowing.  A med change is pretty scary to me, it's the first one and on top of all that stuff I'm worried about having seizures too!  But it makes sense and I know I can do it and that I have so much support from my family :)

Reflection on a Seizure

It has been a while since my last post.  I think with Christmas so close and trying to recover from the seizure, I've just been focused on other things.  But I wanted to write now in case I don't get a chance til after Christmas.

So... from an epilepsy point of view.  It has been the first time I've had one of my big seizures and had to carry on with pretty much everything in my life.  I'm not saying I didn't have such great help from my wonderful family and friends but I had to look after Riley and go to work.  I know so many people with epilepsy have a seizure and just carry on with the day and may have lots and lots, and I know I only have one every now and again.  But it takes me a while to feel like me again, I feel tired and down, maybe that's because my body hasn't become used to them.  Or maybe it's because I will just think I am becoming seizure free and then it is all taken away... and this is the 4th time that's happened, I guess it will take more than a year or even 2 seizure free for me to believe it is really controlled.  But then I suppose I have still been having the odd partial seizure so I wasn't completely seizure free, maybe if they are controlled I'll feel a bit more confident....

I don't want to let my epilepsy affect my life and the fact that I did carry on, go to work, care for Riley, makes me feel a bit proud of myself.  I know that may sound silly, it's just one seizure, but it made me know I can do it.  I'm not saying I was easy for my family, I think I was pretty difficult... but I did it, and they understood that :)

My church has given me a lot of hope and support too.  I feel very lucky to be involved in them, I feel like part of family.  This weekend I'm helping with messy church and then there's a carol service so I will talk about the church more after that :)

Wednesday 4 December 2013

Well I suppose it was overdue ~ tonic-clonic seizure :(

On Sunday it happened.  I had a big tonic-clonic seizure, I was riding my horse at a sort of organised ride thing, and he’d been really strong so I was a bit stressed but he had started to calm down.  Then apparently he stood still and I fell off having a seizure.  It’s quite a miracle really I didn’t hurt myself more and Mojo was a star standing still, it could have ended a lot worse.
I almost ended up in an air ambulance, I think communications got crossed a bit, they couldn’t find us because we were in the middle of a field and they’d been told a girl had fallen off and was having a seizure… the fact it was the other way round made it slightly less serious… but anyway I am sooooo glad that didn’t happen, if there’s one thing worse than being sent off to hospital after a seizure it would be going to some London hospital in a helicopter!  Although don’t get me wrong the fact that they did all that is fantastic, makes you feel safe in the hands of the emergency services :)
Everyone was amazing, a friend from a long time ago happened to find me and put something under my head, my Mum was there and as always saved the day, someone I didn’t even know walked Mojo all the way home.  My uncle and aunt picked me up and then a family friend took me home and took Riley for a walk.  Rich was there when I got home, with a hug and has looked after me so much since then as well.  I am so lucky to have such wonderful family and friends.
So what now?  Well at the moment my brain feels a bit stuffed up, a little bit slow and my memory is awful.  My brain feels like it is gradually returning to normal but it’s taking a while and I have to admit it is frustrating me at work.  But this seizure has shattered a little bubble I have been in.  In a way I had started putting the last seizure down to being pregnant and was sort of thinking I’d been 4 years free of major seizures… but looks like that’s not the case, damn epilepsy for being so unpredictable.
I think it’s too soon for me to think about all the consequences.  But at the moment with our amazing holiday to America booked for the end of March I just don’t see how I can change my medication now, I don’t want to be on holiday in America either having more seizures or maybe even worse with major side effects from Keppra.  So in my brain I’m think maybe putting my Lamotrigine up to 500mg daily and then in April start a medication change.  Then Riley will be a bit older, it will be getting on for summer and just be more settled.  Hopefully I won’t have any more seizures before then or things could be different. At the moment I’m waiting for the epilepsy nurses in London to get back to me after they’ve talked to my specialist, there is no real rush, it’s not like it’s going away tomorrow, it’ll be a long time before I can even begin to think I might be controlled...
The other consequences I guess are, do I ride again, I mean I’m pretty sure I will ride again, but I’m not sure I want to ride on my own.  I think I need to get back on as soon as possible; it’s playing on my mind.  And then there is skiing in America… I just don’t know what to do… right now Sunday is still in my mind and it scares me a bit, but in a month maybe I will feel differently about it.  We will have to wait and see how I feel, and more to the point wait and see if I can get travel insurance.
I’ve called the epilepsy nurses at my London hospital, I am so so thankful for them and the ability to have someone to contact when things do go wrong.  They are speaking to my specialist over the next couple of days and will then get back to me; hopefully by that time my brain will have recovered some more and I’ll be able to think straight.  But for now I need to keep going with life and try to rest as much as possible which is easily said but Riley has decided now would be a good time to stop sleeping through the night!