Please note this is a personal account of an invidual's journey with medication
We all know that medication messes with our bodies in weird ways. The first thing you’re told when prescribed a new drug is the long list of side effects it comes with. But constant exhaustion, memory loss and dizziness are better than seizures, right? Well yeah, until the effects of your AEDs just aren’t worth it anymore and can become potentially dangerous.
In April 2019 I began my second med swap of the year. Why was I changing drugs again so quickly? Because the first new pill I tried was debilitating me, I was suffering from medication toxicity.
I started the initial change in December 2018 and by the time I’d fully transitioned and reached the full dose of my new drug things were de-escalating quickly. I completely lost all of my balance. I had to change the way in which I did everything.
I like getting dressed and undressed standing up in order to avoid procrastination. But I couldn’t even put joggers on without falling over, let alone pull up my socks. The number of times I nearly fell head-fast into the corner of my chest of drawers was terrifying. I had to do everything slower and make sure I always had something to hold onto or somewhere to sit down.
It became unsafe for me to do anything or go anywhere alone. I felt like a toddler, constantly being watched and having to relearn how my legs worked. Things as simple as slipping off my shoes became hazardous, stairs and slopes became a nightmare and I lost a lot of confidence.
But what made this even worse was that the pills weren’t any better than the previous ones. I was still having clusters of up to 10 seizures every few weeks and every seizure just made my body weaker and even less stable. I’ve considered my epilepsy to be an invisible disability for many years, but all of a sudden it became a physical one. I could barely walk.
Luckily I only had to live in this state for a few weeks. I was seeing my consultant every couple of months due to the current severity of my epilepsy and as soon as she asked me to walk in a straight line, she agreed I had medication toxicity and needed to switch drugs immediately. But I know not everyone has a neurologist that is as considerate and compliant as mine.
There’s not a lot of information about medication toxicity, and it can be hard to work out if what you’re experiencing is ‘normal’ or not. It’s considered to be rarer for young people to suffer from toxicity but the reality is you know your body better than anyone. If something doesn’t feel right to you, trust your gut and tell your doctor. Also, ask yourself, do the results of my AED justify how it makes me feel? If the answer is no or you’re unsure, again tell your doctor.
After I got off the toxic meds it took months for me to regain my balance and my confidence still hasn’t fully returned. I’m now scared of stairs and slopes or any surface that’s potentially slippery. And I’ve become cautious about meds. Having been diagnosed with epilepsy at the age of three, AEDs have always been part of my life, I’ve always been open to taking pills. But now I question every tablet I take.
To this day I’m still on a second AED that is toxic. But because I take it at night and it only makes me dizzy, no professional has ever seen it as a hazard. I really am hoping to get off this drug at some point as my seizures are under better control now and I’m not even sure I need to be on two meds. But it’s not always easy to persuade doctors to follow what you want to do.
If you feel that you may be suffering from medication toxicity, my own advice is to listen to your gut. Follow your instincts, you know yourself better than anyone. Contact your consultant or epilepsy nurse and tell them your concerns, especially if it’s a new pill or a new dose. Toxicity can become dangerous, even more so than being unable to walk, so don’t hold back.
