In talking about depression and epilepsy, I mentioned the cyclical nature of seizures and stress that can lead to depression. Having a seizure can cause stress, which can trigger another seizure, which causes more stress. I want to talk about another long-term effect of that cycle.
What Does this Mean for Me?
While seizures are difficult to handle on their own psychologically, I’ve found that the one thing that can make them worse is having multiple seizures in a short period of time. I rarely have more than one a day. In fact, to my memory, this has only happened once. For which I feel very fortunate. However, there have been periods in my life where my seizures come once a day for long stretches of time. And the effects of this, anxiety and depression are (unsurprisingly) at their worst at this time.
Anxiety about work and school are a part of it, but there is additional anxiety when seizures are frequent. That anxiety is not knowing when the next seizure is coming but having to assume it is soon. As a result, I cannot plan for anything.
Losing independence at these times does not help matters, although it is one element that I can actually count on. Because the severity of the side effects of my seizures (muscle soreness, headaches and a bad mood) do not have time to go away before the next seizure and instead build up, I have to rely on my family for even the most simple of tasks. ‘Trapped’ would be a good word to describe how I feel.
It takes a long time without a seizure to be comfortable again after one of these periods. A week without a seizure is usually not long enough to give me hope that they have stopped. In combination with medication changes (increased doses), it can take a month or two to recover from frequent seizures, perhaps longer depending on how long they last.
My family is vital. When I have been unable to sleep for fear of having a seizure (which is common), they have been there to support me. They help me with chores when I am too exhausted to do them myself, they bring me food and get me outside when I am unable to drive, and they ensure me that what I am going through is, in fact, not going to last forever when I am sure it will.