From one medicine to another

So first of all it’s been quite a while since my last post. I mean its been a pretty weird year so far… 2020 in general is a very strange year and I guess with both the world being so odd at the moment and many things changing I just haven’t got round to posting another blog. But I am definitely back now with so much more to say about what I call my broken brain!

My Epilepsy

I have had epilepsy for about 5 years now and it was all caused by a brain tumour I had removed when I was seven. A long time ago and I know I was very lucky because they were able to remove all of the tumour, it just left me with small side effects like learning difficulties and a few years later epilepsy (focal point epilepsy to be more specific).

You can get so many different types of epilepsy and it can effect people in many different ways. For me I have focal point epilepsy which is slightly less well know type. I previous did a blog post explaining and talking about my epilepsy and what happens when I have a seizure. As everyones circumstances can be slightly different I decided to just explain in a blog post what it is like for me.

No More Keppra

So a few years after the brain tumour was how it all started and now its just been the game of trying to find the right medicine which does the job without side effects that drive me crazy and if you know Keppra, which is the medicine that I have just recently been on, you’ll know its kind of known for having such a bad effect on your mental health and it can very often make you depressed.

A few months ago I wrote my previous post about epilepsy and keppra when I was starting it all and hoping the side effects wouldn’t effect me but now I can tell you that it did not work out.

I feel like there is always going to be some level of side effect to whatever medicine i’m on even if its just being tired or not being able to drink alcohol or whatever it is but there is a point where your side effects get so much that its not really worth using that drug and to be honest even though we kept increasing the Keppra the epilepsy was never 100% under control either.

It always feels like yes the seizures and fits of course are the main big concern, but thankfully they don’t necessarily happen every day, but if you are on the wrong kind of drug that is causing you bad side effects like Keppra can do then that is effecting you practically every day.

So after two attempts of taking Keppra and hoping it will work out we officially moved on from that drug and I was put on a new drug called Zonisamide.

New Medicine: Zonisamide and ‘emergency medicine’

Have been on Zonisamide now for a couple of months and so far have not been effected much by the side effects!

Although I’m feeling positive about the side effects a few weeks ago once I was on the full new dose of Zonisamide along with the small dose of Lamotrigine that I have been on for years I had a pretty bad seizure. I literally was stood there for ages like I was in my own world kind of dizzy and totally unaware of whats going on. My mum and my sister were talking to me but my mind was completely unaware of what they were saying.

It ended up leading to an ambulance being called and as my type of epilepsy normally means I don’t go unconscious or anything I don’t normally need an ambulance I just come back to normal by myself but that didn’t happen this time.

Thing is I hadn’t had a seizure this big in a long time. I have had much smaller ones and and regularly have small ones that only last like less than a minute but are still technically seizures so this was so out of nowhere and annoying that a new medicine that wasn’t really causing side effects and was going so well ended up with me having a seizure!

Zonisamide dose I was first put on was 300mg in the evening and they especially said that I should take it in the evening because Zonisamide makes you sleepy. I mean I practically am sleepy and tired all the time anyway and drink a lot of coffee so wasn’t bothered when later on after I had the much bigger seizure the neurologist then said that I should actually also be talking 75mg of Zonisamide in the morning.

375mg of Zonisamide therefore is what I am on now and as usual I am tired but since taking zonisamide my seizure diary on my phone has a less in it. These smaller seizures i’m used to having literally all the time are getting less ever since I took zonisamide so I don’t want to speak to soon but I can’t help but wonder and hope that this is working!

As well as being told to increase my dose of Zonisamide by my doctor I was also given something I have never used before which was this emergency medicine called Buccal midazolam which is used by injecting it inside my gum if I am having a seizure. The nurse was showing us how it works and my mum was like I can barely get her to sit down when she is so unaware of what is going on during a seizure but um yeh i’ll try injecting this into her gum on both sides of her mouth... I could only imagine my mum attempting that. Basically its just another option to help me if I’m having such a big seizure that I have never tried before but if it works the best thing is that the seizure should stop sooner and we won’t necessarily need an ambulance or anything like last time so we weren’t going to say no!

These have just once again been a number of medicine changes I've been going through. Epilepsy just seems to be this constant trying out new medicines until you hopefully find the right one. Some I find are fine like Lamotrigine and some are just fucking awful to take like Keppra. But I am now trying Zonisamide and I hope that this doesn’t cause the kind of crap Keppra did!!

Lucy xo