In my blog post “Counting My Absence Seizures,” I talked about my inability to count my absence seizures. I want to be as independent as possible. Once I saved up some money, I wanted to buy the technology to actually start trying this.
I need some advice on the technology part. I have a digital camera that can record videos (max length of video is 25 min) to a memory card. I was hoping to save money and use my current digital camera, but buy a memory card that can store larger videos. Is this possible or is this project going to be more complicated than I thought? If I ask someone at a store, I feel that they will try to get me to spend as much money as possible.
My idea is to occasionally record myself for a length of time doing normal activities at about the same time of the day (such as: 7pm). I could then look at the videos to count my absence seizures. I also want to keep the videos just in case they would be needed at a later time.
I had a checkup with my Neurologist today. I went to a little cafe nearby and ate breakfast before going in. I arrived at the office early and started filling out paperwork. They then measured my height, weight, and blood pressure. Here are the details of how things went. I will start with the bad news and end on the good news.
The Bad News
I might be shrinking. I have lived my life believing that I was 5 feet 2 inches tall. When they measured my height today I am only 5 feet tall. Either some nurse earlier in my life measured me incorrectly or I am shrinking. It is a depressing thought since it is already difficult finding dress pants short enough for me.
My neurologist asked about the number of seizures that occurred since my last visit. I had no definite way of saying how many I had been having since I am not conscious of them. I do notice that the back of my neck hurts sometimes. In my post Counting My Absence Seizures, I talked about attempting to find a method of measuring the number of absence seizures and received some good feedback. I will have to try it out before my next appointment.
I told my neurologist that I believed my absence seizures had increased due to many stress-related issues including searching for full-time employment. She recommended a second medicine to better control my absence seizures. I would take it along with the one that I am already taking. I fear changing my medicine routine especially if it will slow me down cognitively. She mentioned that we could start on a low dose and go up from there. I wonder if the new medicine is really necessary since I have not been meditating as much as I used to. I also stopped exercising in an attempt to save money this summer. In the end, my neurologist said that I could think about my options and get back to her.
The Good News
I lost 8 pounds since April! This was so good to hear. My progress has been slow, but I have focused on making better choices when picking out the food that I will eat. I have tried to get more for my dollar by purchasing more fruits and vegetables. I also attempted to stop eating out at restaurants.
My neurologist noticed that my hands do not tremor as much as they used to. I attribute that to the fact that I have cut down on coffee, which I heard only makes the tremors worse.
I have tried to think of a way to accurately count my absence seizures. I have generalized epilepsy, which “impairs consciousness and distorts the electrical activity of the whole or a larger portion of the brain.” (wikipedia.org) Since I am not conscious for these type of seizures, how can I count them accurately so my neurologist can get an idea of how I’m doing? I don’t have a roommate that I can rely on, and would prefer to be as independent as possible.
Does anyone have a method that has worked for them?
I know it has been awhile since I have last posted, but I have been through alot in the past few months. I will attempt to fill you in on the details in the upcoming blog posts. Here is a basic summary:
I still don’t have a full-time job despite having gone through a difficult job search.
My spouse and I are going our separate ways. It was a decision that we both made and I am attempting to make sure that we are separating on the best possible terms. Not even professional counseling was helping.
Due to the tremendous stress of #1 and 2, my absence seizures have increased and I have small bouts of insomnia due to anxiety. However, my myoclonic seizures and tonic-clonic seizures are still well under control.
I will make sure to keep you up-to-date on how things ended up like this. I am hoping that my story can offer some insight for others.
Nothing probably causes more confusion than my absence seizures. According to the Epilepsy Foundation, “Absence seizures (e.g. a seizure common to petit mal epilepsy) are lapses of awareness, sometimes with staring, that begin and end abruptly, lasting only a few seconds. There is no warning and no after-effect…Absence seizures are characterized by a brief impairment of consciousness, which usually lasts no more than a few seconds. The seizure is usually associated with some degree of altered awareness.”
From what I have been told, my absence seizures consist mainly of staring. I don’t know for sure because I am not conscious of it happening. The absence seizure only happens for a second or so, but people think I’m staring at them. Fortunately they are very short so I don’t miss too much of what is going on around me. If they start coming more often, I am stressed or was sleep deprived and more serious seizures could be on the way.
I implemented a plan to help control stress. I started doing stress-reducing activities to try and control the staring. I went to the beach on many occasions. I also am trying meditation and yoga.