Neuro appointment two days on.

I decided to leave it a couple of days before writing about my neurology appointment that I had on Tuesday simply because my head wasn't in the right place. Two days on though, if I'm honest, I still don't know what to make of it all.

My mum came with me to this one which was a massive help in terms of moral support and in trying to explain what has been going on in terms of seizures and episodes. I had a couple of smaller ones in front of her whilst I was staying there so that was useful for them to hear what happens from a witnesses point of view. I also happened to be sporting a nice cut and bruise on my forehead where a couple of days previous I'd had one of the weird drunk episodes, lost my balance and headbutted the side of a barn. That was pleasant..

I've now managed to catch two seizures on camera. One of a minor drunken feeling 'episode' which I'm still non the wiser as to what they are and one of a big convulsive seizure that I had whilst sleeping at night. I really do have a massive issue with the idea of watching myself have a seizure. Unless I REALLY REALLY have to I won't watch the video's. I think it's a control thing. Makes me shiver just to think about it, I prefer to be literally kept in the dark about the whole seeing what I look like during a seizure thing... I showed these to the Epilepsy nurse and the Neurologist they didn't really say much about the smaller seizure but when it came to the bigger one during my sleep they seemed to be rather baffled by it. The neurologist commented it was quite long... this bothers me slightly because the morning after that one I didn't feel particularly achy and tired compared to some occasions which makes me wonder how long some of the others are. Another thing she said was "it's unusual"... and left it at that. Unusual... WHAT DOES THAT MEAN?!? That one word is probably what's bothering me the most. I can't get my head around it. 

After my appointment I was sent straight to other parts of the hospital for blood tests and an ECG to check my heart rhythm. These are just usual tests that I will have to get used too. The ECG in particular is important in this case as I am about to start taking a new medicine which can disrupt a normal heart rhythm. The new medicine is call Lacosamide, another Anti Epileptic Drug (AED) that I will be adding to my current 2000mg's per day of Keppra. I start it tomorrow at a low dose of 25mg per day for the first week and will increase it over a month to 400mg per day I have no idea how I might feel on it so I'll just have to see. Hopefully it'll do nothing but lessen my seizures. I still have no idea what these newer episodes of unresponsiveness, talking no sense and feeling drunk are. I did talk to a lady who told me that what I explained sounds almost exactly how her husband acts and he has had them diagnosed as Complex Partial Seizures.  This wasn't mentioned in my appointment though, no names for anything where mentioned actually. The Lacosamide is supposed to be used for partial seizures so I'm assuming this is what my neuro has in mind...

All in all I'm more baffled now than when I went in but these things take time. A long time. 

Stay well!