I wanted to branch out and discuss a few of the various epilepsy syndromes including a basic definition, some helpful videos, and possibly some guest posts. I thought I would start out with Lennox-Gastaut syndrome.
I have seen this challenge and thought I would try it myself. Mine might be a bit boring compared to some others, but I will do my best to answer the questions honestly so you can get to know me better.
Day 1: Introduce yourself. What illnesses do you have? How long have you had them?
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.
First Aid for Complex Partial Seizures
I did not create the following video, but it does a great job of illustrating what to do if someone is having a complex partial seizure.
More First Aid Tips for Partial Seizures
The following is a guide developed by the Epilepsy Foundation for specific types of partial seizures. For more assistance, please contact your local Epilepsy Foundation.
Recognizing Partial Seizures
The following video, created by Health Guru, describes partial seizures and the difference between simple partial and complex partial seizures. Many people are familiar with tonic-clonic (formerly known as grand mal) seizures, but are not as familiar with these types of seizures. Being able to recognize the type of seizure will help you figure out how best to help.
What is a Myoclonic Seizure?
According to the Epilepsy Foundation:
Myoclonic (MY-o-KLON-ik) seizures are brief, shock-like jerks of a muscle or a group of muscles. “Myo” means muscle and “clonus” (KLOH-nus) means rapidly alternating contraction and relaxation—jerking or twitching—of a muscle. Usually they don’t last more than a second or two. There can be just one, but sometimes many will occur within a short time. They occur in a variety of epilepsy syndromes that have different characteristics. During a myoclonic seizure, the person is usually awake and able to think clearly.
My Myoclonic Seizures
At this point, it is important to remember that epilepsy is a very individualistic condition. What happens when I have a seizure may be radically different from another person with epilepsy. Time of day is important for me. Most of my myoclonic seizures have occurred late at night or really early in the morning. To anyone else, it would seem like my jaw is twitching. If the myoclonic seizures do not stop, often they progress into a tonic-clonic seizure (type of seizure normally shown in tv shows and movies). I can tell when this is going to happen because I gradually lose the ability to think clearly, speak or even walk. I have always considered my myoclonic seizures to be a warning of a potential tonic-clonic seizure.
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?