Communities…the online ones…are a great tool especially when you have an illness. I love feedback, input, opinions, examples. Everyone has a story or an example of what has happened to them. In this situation, I’m talking about medications.

I think I’m a bit unusual when it comes to Epilepsy because I’ve always been a ‘one drug girl’. And let me tell you…I’ve tried virtually all of them. Depakote, Dilantin, Keppra, Lamictal, Tegratol, Lyrica, Zonegran, Trileptal and so on. If the FDA said ‘yes’ to it, I’ve had it on my shelf. Many of them I’ve had allergic reactions to…so they didn’t work out so well for me. In the spirit of fair disclosure, I’m on Topamax now, trying to get off of it and get onto the newest drug…Vimpat. All is going quite well (thanks Vimpat for your daily emails–wow, what a marketing campaign!). Why, you might ask? Anti-seizure meds run their course for me. I think they simply ‘stop’ working well after a period of time and my seizures pick up. My epileptologist tends to agree. Even though my Vagus Nerve Stimulator (VNS), which was implanted nearly a year ago is working well, I still do have seizures and they have been increasing with the Topamax. So, it’s time for a change.  

As for my one-drug philosophy. This isn’t right for everyone.As I always reiterate, everyone’s Epilepsy is very different. But, one medication, one set of side effects. That’s how I look at my world. I read all of the emails I receive and all of the posts on the various ecommunities I’m a member of, and sometimes I wonder if some of the suffering from these brutal side effects could be alleviated if the medication cocktails were altered? Maybe some of us could question our neurologists about this? It’s worth asking… In the meantime, I’m thinking of all of you and the side effects you suffer from. You’re not alone…