I had my follow-up appointment this week for all of the diagnostic tests and to review medication. To recap, the head CT and MRI were normal. The EEG, however, was not. I expected this. Epilepsy is a life-long issue. It can become a non-issue for many people. And, it was for me for a very long time. Now that it is back, life will be very different for a while.
An EEG records electrical activity in the brain. The Doc wants to see steady waves. My Doc saw plenty of steady waves, but he also saw spikes. I asked him when the spikes were seen in the EEG. He didn't give me straight answer, but it made me believe that the spikes didn't only occur when my brain was provoked by hyperventilation and a strobe. He actually said, "there is some irritable activity in your temporal and parietal lobes." I honestly laughed out loud when he said that. I love it, "irritable activity." So, now I can use my irritable brain as a crutch if I say something offensive.
So, what does all of this really mean? It means, my brain has uncontrolled electrical activity and yours does not. The two types of major neurotransmittrs in the brain can't get it together to either increase activity or decrease activity. The result is a seizure. The medication I take is to control the activity. The first medication was called Keppra XR. It has not been kind. I feel tired, have insomnia, loss of appetite, crabby, and did I mention crabby? It is hard to be a Mom and a career woman with those side effects. Heck, it is never easy. But, it is a giant struggle on this medication. The Doc suggested a new drug that is supposedly more mild. But, I have to take both for a month. I have to have the new med in my system for a month before I come off of the old med. I still can't drive until the end of August. I also suspect that I will be on medication for at least two years.
I mentioned that the "irritable activity" was found to be in two lobes. That, of course, drove me directly to the internet to see what it means. It means, I freaked myself out. The different lobes in the brain are responsible for different functions. The Temporal lobes are on either side of your head, right above your ears. Think, your temple. The Temporal lobes involve sensory, memory, language, and personality. The Parietal lobes are centered between the top part of your head and the very back. So, probably the "crown." The main function is cognition and spatial relationships.
What does this mean for me? I have no idea. My biggest worry and concern is not that it will be an issue today or tomorrow. But, that I will end up with problems as I age, like dementia. I watched my dear Grandmother struggle with this. It isn't pretty. So, my extra time is now being spent looking up ways to take better care of my brain. Yes, you can actually take care of your brain.
Many people laugh about a more natural lifestyle. They can laugh. It is okay. But, it is not okay to think that our society is "okay." You are what you eat. So, if you eat chemcial-laden foods, processed foods, and slather aluminum under your armpits for 70 years, believe me, you will have problems.
Pteri .. your blog is so right on several points and I want to just add a couple more.
ReplyDeleteNeurological disorders, as well as other diagnosis's out there, require some work to manage. Your doing a great job, your informed and knowledgeable. Your also writing and expressing your feelings, which is equally important, and actually therapeutic.
I'm not an MD, but I have had some exposure and experience with Neurological disease as well as Cancer in my own life.
Another truth is this; we have the best medical care in the world, but, its medical are that we have to manage pro actively, and re actively. You have to go after that medical care because it won't come to you. Second opinions are big in my plan. Its worth it to do the travel and confirm what you already know, or possibly get some new direction that will benefit both short term and long term. And then, we have to react to what may happen on any given day, from side effects to new symptoms. Especially for Neurological disorders, and as so accurately written, it depends on the part of the brain being affected.
Thanks too for the blog opportunity and stay the course, not only will you help yourself and your family, you help all of us who struggle both physically and emotionally with illness.