If I am being entirely honest, I don’t remember the day I was diagnosed with epilepsy in 2001. It’s all very fuzzy to me, likely because my medication at the time wasn’t right for me. I spent many of the years that followed in a fog. But I was a bit surprised the first time I was asked about that moment to realize I remembered almost nothing. My first seizure, yes, but my diagnosis, or even my second seizure? Almost nothing.
An Epilepsy diagnosis is certainly life-altering news, especially for more debilitating cases, and even in mild ones. You eventually find a new normal, but there is a process there, and that process takes time. I still have to adjust every time it is recommended to me to change my medication dosages or the medications themselves, or every time I have a seizure (even if it has been a while since my last one), and every time that any of these things interfere with my life in some small (or large) way.
Here are a few things I wish I had known when I was diagnosed.
Your First Medication Will Probably Not Be Your Last
For some reason, I never anticipated having to change medications in my life. I, and possibly my parents, thought my first medication would be the only one I would take. But, as technology has changed dramatically since then, so have opinions on what I should take, how much I should take, and even when I should take it. This has all lead to a dramatic reduction in side effects.
You Should Seek Support
It is hard for people who don’t have epilepsy to really understand what it’s like. Friends and family members may be sympathetic and can listen; but finding someone out there who has epilepsy, who knows exactly what it’s like, is an invaluable resource to someone who is suffering. They can be extremely helpful to the families as well, as others with epilepsy are typically better equipped to help in emergencies when family members are not around. (link to support group information?)
You Shouldn’t Ignore Your Neurologist….
Your neurologist can be one of your new best friends in this fight. It is certainly in your best interest not to lie to them, to ask them questions, and to take advantage of his/her expertise. Looking back, it was my first instinct to hide from and deny my diagnosis, but the more knowledgeable you are, the better able you are to help yourself.
…but You Should Find One You Trust, Too
Neurologists are also human beings, and if you don’t like the one you have, and it is reasonable to do so, find one that you do like. I made the mistake of seeing one I didn’t like for years, and changing doctors was simply life-changing for me. He immediately found better medications for me and put me into testing to see if I was a surgical candidate. This engendered a sense of trust right away, and I always hope others trust their doctors as well.
The experience of having epilepsy is often an uphill battle that can at times feel isolating. It is so important, especially at the beginning, to seek out those that truly understand, and to seek out information that helps in your understanding.