Monday, August 10, 2009

Always a person with Epilepsy

I have a dear friend who coincidentally had seizures earlier in her life. I never knew that she had them until I started having seizures. And then one day she decided it was okay to talk about it.

When she was in college she started having seizures. When she went to the neurologist he asked her if she had a history of seizures. She said "NO" and at the same time, her mother, who had accompanied her to the doctor's visit, said "YES".

My friend was shocked. She had no idea she had seizures as a young child. Her parents had never told her! Looking back now, she remembers a few incidents which were never explained to her in her youth. College brought on the "perfect storm" for her, with stress and sometimes a lack of sleep. She went on medication and her seizures became controlled.

Her seizures were held at bay for quite some time and then years later her neurologist allowed her to go off of medication. For the past 10+ years now she has been off medication and seizure-free. But somtimes I wonder... are we really ever "seizure-free" entirely?

Over these past years she has had moments that she and I both describe as "brain pain", where you have a sharp head pain. She has had times where her face appeared to droop, as if she were having a stroke. Not everything has been perfect, but she has been able to live without medication and in a somewhat "seizure-free" world.

That has all changed now, as her seizures have surfaced once more and she is now awaiting an appointment with the Epileptologist's office in Omaha. In her and my mind, it cannot come soon enough. We know she will have a consultation, and then probably be referred for an MRI and EEG testing. It has been years since she has had either. We know that the conversation will inevitably come up regarding medication or going back on medication. I think she has had enough seizure activity these past few weeks that she is ready to accept that route if that is where testing and consultation leads her.

My husband and I recently met a young man in his 30's who had a stroke about 18 months ago. You wouldn't know it, as he is strong and young and healthy. You wouldn't suspect that he was hospitalized for a long period of time, learning to walk/talk and rehab. In a conversation with him, I asked him if he was on any medication since his stroke. He is only on one and it is a cholesterol medication. He said he "fought hard" to not be on meds.

I remember when I first started medication. It was Tegretol and I was miserable. I remember dreading taking medication. I kept thinking of the medication bottles that adorned the dining room table at my grandparent's house. Who wants to take medication if they don't have to? I hesitated at taking aspirin. I would suffer through a day or two headache without taking anything just because I wanted to get through it without the aid of medication... even an aspirin.

My body was so overtaken by seizures that I finally gave in as well and have lived a life with anticonvulsants and medication changes over the years. I hope that one day I can be medication free, but in the meantime I am enjoying my "seizure-free" moments and relishing every day that goes by when I do not have to think about the fear of a seizure.

Medication is a huge topic at our monthly support group. It is a concern for everyone no matter what age the patient. Read more!