My Experience of Epilepsy Medications

Hello again, lovely people! Today I'm talking about medication and the impact it can have. Medication can be a huge part of anyone's life. It isn't just epilepsy, however as it is something that pretty much everyone with epilepsy has to deal with, I thought I'd share my personal experiences on it. I'm currently on four medications for my epilepsy; Carbamazepine, Zonisamide, Clobazam, and Levetiracetam (if it seems like a lot that's because it is!). Managing four medications can be tricky and I've had a lot of experience with a variety of medications so I thought I'd share some of all that.

If someone starts having seizures and is given a diagnosis of epilepsy, AED's (Anti-Epileptic Drugs) are nearly always the first treatment that is tried. Fortunately, roughly sixty percent of people's epilepsy can be completely controlled with AED’s. However, the process of finding the appropriate combination of medications can be a long and difficult one. Personally, my team at the hospital have never managed to find a combination of medications that have completely controlled my seizures (And for me it's a process that has been ongoing for over twenty years!) However, the adjustments that have been made to my medications throughout my life have gradually improved my seizures. I am now in a position where my medication controls one of my types of seizures but my myoclonic jerks (seizures where my right leg twitches and can sometimes radiate throughout the whole body) are still only partially controlled and we are still working on it.

One of the reasons why it can take so long to find the right AED for a person is because everyone reacts differently to them, and for some people, some medications just aren't effective. Different medications tend to be used for different types of seizures and because epilepsy can come in such different forms, which can sometimes be very complex, particularly if they don't know the cause of the seizures or what area of the brain the seizures are coming from. It can very much become a game of trial and error to see what works and what doesn't. And as new medications are becoming available it is more likely you will find a medication that will work. Zonisamide is a newer drug and it was a personal gamechanger. Finding the right balance of Zonisamide got rid of my bigger seizures pretty much completely. But that's just me. Different things work for different people.

Side effects are probably one of the things I've struggled with most about taking AED’s. I feel especially tired at particular times of the day. It's gotten to the point where I can actually tell the time by how tired I am sometimes! I can be worryingly accurate! I also have to spend my life apologising for burping as that is a side effect of the Zonisamide I was talking about earlier. I'd take the burping over the big seizures any day though, however frustrating. I have been given tablets to manage that side effect though. It does feel mildly ridiculous taking tablets to manage the side effects of other tablets, but if that's what I've got to do… Those are just my side effects though. Just like epilepsy affects different people in different ways, different medications affect everyone differently. Doctors are very kind though. They take you off the old ones slowly and start you on the new ones very slowly to lessen the potential for side effects. Occasionally they’ll just swap you over but only if the AED’s are very similar. This has only happened to me once. Apparently, it normally works, but I had been taking the medication they tried to do it with for over 10 years. Evidently, my brain had grown rather attached because it didn't react well and I had the worst seizures I'd had in years. That's just me though. I could never be normal.

Side effects aren't the only complication to medications. If you're me and find being normal quite difficult you'll prove allergic or intolerant to medications doctors try to give you. When I was little, I was started on a new medication and came out in a horrible rash. I was deemed allergic and I have never taken it since! I also had another experience where I didn't have an allergic reaction, but I reacted to a medication I had in hospital once. It stopped my seizures but also caused nasty hallucinations that lasted several hours. So, I try to avoid that one too! Knowing that I react to these medications I wear a necklace with that information on at all times so if I'm ever in an accident or seize in public without anyone, paramedics and hospitals know what not to give me.

Probably the most important thing about AED’s is, like with any medication, they only work when you take them! However, if you even forget one dose, this can cause a negative reaction almost immediately depending on your seizures. I was encouraged as a child to take responsibility for remembering and as a teenager, my parents despaired at the emergency prescriptions that had to be sent through because I'd forgotten to order my tablets or the number of times my mum had to leave work to bring my morning dose of tablets to me at school! And unfortunately, I'm still forgetful. While I am much better at remembering than I was growing up, I still forget occasionally and that's had nasty results. The best way I have found to remember is my phone has two alarms, for the morning and evening. And I honestly don’t know how I functioned before I had a pill pot. I have one with the tablets I need on a daily basis which goes everywhere with me and I refill every night just before I go to bed. This has helped me organise my meds so much better and because I am refilling it every night, I am far less likely to forget when I need to order something.  

My life since my diagnosis has been this game of trial and error with medications. My seizures have definitely improved as I've got older and although some ideas have crashed and burned, for the most part, things have been on the upward trajectory. I am so grateful to God for the doctors I had who looked after me; my Paediatrician, the team at Great Ormond Street, and now my consultant at John Radcliffe, as well as the consultant I saw privately in between when everything was going pear-shaped. It would be much harder to do the job I do, which I love so much if they hadn't gotten my seizure control to where it is now. By no stretch of the imagination is it perfect but it is much better than I thought it could be when I was younger and that is mainly down to their advice and skill in balancing out my medications in the way they have.