Medicine update: I'm on Keppra...

Ok so I thought I’d do a wee post just as my medicine and everything has been changing quite a bit in the last couple of months.

Basically my epilepsy is at kind of a confusing stage where like half of it is kind of under control and fine but my smaller kind of daily mini epilepsy activity in my brain seems to just not be too happy! It’s like I’m partly there being able to feel less anxious about potentially having a full on seizure but also at the same time I’m having daily reminders of it as my brain continues to feel dizzy and freak out most days.

Most recently my epilepsy has been changing as I have been going from one medicine to another. The drugs I was on was Lamotrigine and Carbamazepine and now i’ve been gradually decreasing my carbamazepine and replacing it with Levetiracetam (also known as keppra).

Changing meds its like one part of you wants to because you want your epilepsy to be happily under control but another part of you grows that anxiety of worrying will it work? is it worth it? what side affects would this cause?

If you know about keppra you’ll probably know that it is very well known of making you feel depressed or angry. Tbh this isn’t my first time on keppra. 2 or 3 years ago my doctor put me on keppra. Its like I see why I went on keppra, its meant be a good and effective drug but for me the side effects it had on me when I tried it before just didn’t make it the right medicine for me. I remember how it made me feel so fed up and so low. Made it so difficult to actually be happy and really enjoy things in life.

Then why am I trying it again?! Well when my doctor suggested keppra I did feel a bit unsure given how bad it made me feel last time but the thing is I tried to remember that that was like 3 years ago and my broken brain will have changed and developed so much since then. I kind of felt like I know how it made me feel then but I can’t know how it will effect me now until I try it.

So I decided to go for it…. and can’t say I was looking forward to this change but I knew I’d never really know until I tried it. For the first 5-6 weeks I was on three drugs - Lamotrigine, Carbamazepine and keppra. The Lamotrigine stayed the same while the carbamazepine slowly was decreasing and the Keppra was increasing.

My first thing I clearly noticed from this was how unbelievably exhausted I felt! I mean I think ever since living with epilepsy I've felt more tired but being on all three drugs felt exhausting. But I’ve always been pretty good at powering through that and finding some way to keep going with things even though i’m so tired! I guess that another tricky thing with medicine changes like this is that you just got to get on with everything while your body feel so drained and sleepy. I’ve felt like just telling people I’m tired doesn’t really make people understand how tricky that makes everything feel but this meds change has really felt like a lot to deal with on a day to day basis.

I’ve felt this exhausting feeling from the start of the meds change when i was on three drugs and still feel it now I’m on two drugs (Keppra and Lamotrigine). I’ve constantly really been finding it so much harder and more difficult trying to sleep. Its like i’m exhausted and want to sleep but can’t get to sleep and this just makes me more frustrated and annoyed knowing I want to sleep but can’t. Its like the extremely frustrating cycle of one side effect effecting another.

I guess I should also mention the effect Keppra has had on my mood. I honestly feel so grumpy all the time. Like so many little things just piss me off it’s crazy. The number of times I’ve said ffs or felt like screaming with frustration at things is ridiculous.

I’ve always felt quite like I’m not going to dislike the drug i’m on just based on some side effects cause I can learn to live with it. But I’ve realised these side effects and general feelings of unhappiness is not something I’m willing to live with.

So ngl trying Keppra was a complete fail haha. There was no real change with controlling my smaller seizures and tbh if anything they’ve actually felt worse. I mean I have a clear feeling of confusion and lost of control in my brain when a seizure is about to happen and ever since I’ve been on keppra most days this feeling of a confused brain freak out happens like 3 to 5 times a day and is just not under control.

I wanted to really try this out and really hoped that my brain got used to it. I just hoped the Keppra was taking its time to settle down but I’ve given it time and its getting no where!

Sorry that this sounds like a bit of a rant about Keppra haha but I wanted to be real and just give an honest little insight to what I’ve felt like since I’ve had this medicine change.

So what am I going to do now? I’ve just really decided this isn’t working. Idk what other drug I’ll end up on but I’m sure I’ll post about it some point soon!

Lucy xo