If there is one thing people have said to me more than anything else over the years, it is, “If you’re still having seizures, why don’t you change your medications? Or why do you take them at all? You know eating eggs is supposed to help with that. And it’s completely natural.” Less frequent but I feel more harmful, are comments about how bad these medications are for me.
I understand this attitude to an extent. The people who say these things see me have side effects. They see me talk about how tired I am and how much I don’t like taking medicine. I know in the end they are trying to help. Some don’t trust medications in general and believe they are saving my life. And then, to top it all off, they hear I am having seizures, the very thing these dangerous pills are supposed to be stopping. With all of that in mind, it seems fairly logical. If my pills aren’t “working”, then why should I keep taking them?
What Medications Do
The misunderstanding might come in thinking that medications are a cure for epilepsy. But my goal in taking them is to control my seizures, and that is what they currently do. The number of seizures and auras I have at the moment are infrequent enough to enable me live my life comfortably and independently.
Another comprehensible idea is that less medication is always better. In one sense, this is true; less has been better for me when it comes to side effects. But when it comes to controlling seizures, less medication (or no medication) is not always better. With my current method of treatment, it is dangerous.
None of this is to say that there aren’t other options for those living with epilepsy. Current treatment does not boil down to medication. The thing I want to emphasize is how important it is to discuss these options with a neurologist. Because I know that simply going off medications without any medical supervision is the wrong approach.
In late 2004, a few months after I started college, I decided to stop taking my medication because the side effects were too much. I was exhausted and couldn’t get any homework done. And for a while, my strategy seemed to be a good one. I went over a year without having a seizure. So I continued to do this for the next couple of years, and I became convinced my medications were the cause of my seizures.
But the good times did not last. In 2006, I had three seizures back-to-back one day and ended up in the hospital. After a blood test, my flawless plan was uncovered when my medication levels were found to be far lower than they should be. I’m pretty sure this is wishful thinking, but a part of me hopes my parents were relieved to know the seizures occurred for a logical reason.
I do remember very clearly that they were not happy with my plan, and did not trust me again with taking my pills for a very long time.
Epilepsy has been an experience. A 17-year long learning experience that has required a lot of experimentation, willingness to confront reality, and patience. Many of these things have only come with growing older. I certainly was not capable of any of them at 15, and some of them I refused to do at 30. But I am getting better. I’ve had to learn the hard way to be safe in some of these endeavors.
Finally, not everyone is going to understand epilepsy. It is unreasonable for me to expect them to do so, especially as someone who lives with it and does not completely understand it myself. So, just as patience comes with having epilepsy, patience comes with learning how to share my experience of epilepsy.