Thursday, November 1, 2012

November is National Epilepsy Awareness Month

If you're going to read just one of my posts, please read this one.

I was going to do a couple of different blog posts tonight, but I started feeling kind of odd and just decided I did not feel up for it. I was going to wait to write this post next week, but considering how I'm feeling today, I thought it might be a good time to write this post today.

November is National Epilepsy Awareness Month.

I wanted to begin my story by sharing with you the definition of epilepsy. Instead, I'm going to share how I learned what it is. At the age of about 4, I started having migraines. By the time I was ten years old, I was having headaches every single day. At some point in time I realized the pain never went away. Around the age of 13 I went to the doctor because my headaches were getting too bad to deal with. This meant a lot of tests, including an EEG. The test showed seizurely activity.

Anyone can have seizure activity. In fact, some types of seizure activity are perfectly normal. Only recently did I discover that hiccups, in fact, are a type of myoclonic activity.

My point is, you can have seizures or seizure brain activity but not have epilepsy. Here is the medical definition of epilepsy:
"a disorder of the central nervous system characterized by periodic loss of consciousness with or without convulsions. In some cases it is due to brain damage but in others the cause is unknown"

When I was 14, I ended up in the emergency room because I was having a seizure. It was about 4 years later that I was finally diagnosed with epilepsy. About 6 years later that my seizures were finally under control. During that time, I under went a lot of tests, took a lot of different medicine, but what scares me the most is all of the time that we were not aware I was having seizures. I was probably having seizures for years and not knowing it, and as a result I do have some brain damage.

I was diagnosed with two forms of seizures. The first is probably one of the more commonly known types: petit mal or now more commonly known as absence seizures. Those who have witnessed petit mal seizures often describe it as though the person is just staring off into space for a few seconds. Now, we all do this to some extent, and I can tell you it's not the same thing as what most people do normally! Often we find ourselves relaxed, or just waking up and daydreaming and we just kind of let ourselves go. This is not the same thing as a petit mal seizure. I can't think to describe the difference, but I did want to make that point because people often confuse the two.

I also have complex partial seizures. These scare me more than anything else, and it's been almost 13 years since I had any to the best of my knowledge. The memories of them are locked in my mind, however. In short, during these seizures the mind kind of goes on vacation and the body takes over. That's the simplest way I can think to describe it. Normally people don't remember having these seizures, but I was aware for at least part of them. The seizures themselves aren't necessarily dangerous. However, people having these seizures may put themselves in harms way without having any control of it or even being aware of it. Here's a few examples from my own experiences:

- crossing the street in front of moving vehicles
- using a microwave - I microwaved something for much too long, then picked up the item and burnt myself
- dropping things

One of my worst memories is one day coming home, I think from the neurologist actually, and pouring myself some orange juice. I dropped it all because I lost control of my arms. My poor mother had to clean up the mess, but she also had to help me take a drink. Same day, I tried doing some cleaning, picked up an antique oil lamp and dropped it. I still feel terrible about breaking it. I vaguely remember a few times my mom would tell me she thought I was having a seizure and then maybe ten twenty thirty minutes later I would try to tell her I was having seizures.

 I've been fortunate because my seizures seem to be under control with my medicine. Although I suspect I just outgrew the complex partial. They tend to go into remission and then reoccur during midlife, so I still live with that fear every day that one day I'm going to wake up into the world of seizures again.

As I said, it's been almost 13 years since we got my seizures under control. There are still some things I have to live with:

  • I have to take medicine every day. This particular medicine causes Lupus, and I'm scared I will develop it as well, if I don't have it already.
  • At the age of about 14 I made the choice not to have children. I wasn't even a woman yet, not really, and I had to make this choice for myself. I want children more than just about anything, but I do not want them to have my problems or worse.
  • I still have a headache, which the doctors think is from the epilepsy but they don't really know.
  • My memory sucks at times. Sometimes I remember things incorrectly, or just not at all and I'm sorry but my loved ones, as much as I do love them, sometimes treat me like I'm nuts because I remember things wrong. Other times I remember things much much clearer than others do. I often have to write things down or I have to do things right when I'm thinking about it otherwise I'll forget.
  • I've never learned to drive. Partly because of the seizures, but also the headaches. My reaction time seems so slow and I don't trust myself. The last thing I would want to do is hurt someone else because I was too lazy to walk.
  •  I am having trouble losing weight and I suspect it's partly genes, partly being in pain all the time but also simply because of the brain damage.
  • I communicate much better via the computer than I do in real life. This post is witness to how effectively I can express myself while typing. On an average day, I wouldn't speak even half of these thoughts out loud.
  • I also have days like today where I don't feel "quite right". Can't put a finger on it, obviously not having seizures but it certainly feels like my body is trying to.
Now, I'm writing this and sharing my story with you all not for sympathy, but just for some understanding. The one thing I struggle with the most is confidence. I lost many, many friends when I started having seizures because at the time I was a teenager and that level of confidence waivered even further.

Half of me doesn't want to share this at all. You tell people you have epilepsy, and they treat you differently. They don't mean to, I know that, but it's still there regardless.

While in many ways this has been a gift - I've had to take care of myself and monitor my health which means no drinking alcohol, for example - in many ways I still feel like a burden. It's not easy being a burden and I do try not to be one, but the financial burden is always there. I don't have a job and I don't know if I could hold down one. That more than anything else is scary, depressing and also frustrating. So many times I think "I wish I could do this" or that for people, such as holding giveaways for you all, but unfortunately I can't. I mention this because Christmas is next month of course and it was always a big celebration time for me, a time I always really looked forward to and at the moment it wears heavy on my mind because there is so much I would like to do and give to others but I don't know what the means to that could be, not for me.

Which brings me to another point, I wanted to express that people - and epilepsy - are like snowflakes, no two are a like. So while these things are that which I have lived with and felt, it may be different for other people. Especially because I have the wonderful addition of the permanent headache, I don't really know which of my problems are caused by which problem so to speak.

Now I am rambling. As I said though, I don't speak much out loud. Most of my thoughts are in my head and this blog allows me to get them out, so I hope you'll understand why at times I post so much. I do know I blog more than a lot of other bloggers. Again with the rambling.

Anyway, if you have any questions, anything at all, please feel free to ask away and I'll try to answer your questions.

So, as I mentioned it is National Epilepsy Awareness Month. The color for this ribbon is actually one of my favorites: lavender. I will be wearing my light purples off and on throughout this month and I'd appreciate it if you would too! I'll have my first purple manicure to share with you tomorrow :)

If you actually read all of that, I'll give you a cookie! Well not really, but thank you!


  1. Thank you for sharing your story with us. I am sure it was hard growing up with that terrible headache and feeling helpless and have no one understand how shitty it feels. I am glad your mom was there at some point of time for you.

    I am also happy to know that your seizures are under control and even thou you have to make hard decisions, it was responsible decision and right now, with you explaining to us what you have went through, I better understand what Epilepsy is now. I hope those headache stays away and visit you less often.

    Thank you Melanie for sharing this and with technology, I hope you can make lots of good friends through the net despite the distance and with support from everyone to help you through and lend u a listening ear when you need someone to talk to. I know I met some awesome people on the net and we are connected with a common love which is nail polish :)

    I will try to wear lavender more this month in support of National Epilepsy Awareness Month and remember, we are proud of what you are doing now, bringing awareness to more people what Epilepsy is about.

    Now where is my cookie~!!

    Stay happy always and feel free to pm me if u need to chat.


    1. Thank you so much for your kind words, it is very much appreciated. Yes, growing up with this was not easy. I've made some good friends online fortunately :) Thank you for wearing lavender, also! Glad my post could be informative!

  2. This was very touching to read, especially when I read that part about you having to make a very grown-up decision at such a young age to not have children. My aunt has epilepsy and decided to have a child against her doctor's wishes. Her seizures are grand mal without drugs and she knew that any child she had would have severe mental issues. She had my cousin, the same age as myself, and he was born without the top part of his skull as well as blind. The amazing thing is he went to school and has a degree performance and plays concert piano flawlessly! It hasn't been easy for her and my cousin so I understand why you would choose not have children. I think I would do the same. Thank you for sharing your story!

    1. thanks for the feedback Jayne. I'm so sorry to hear about your cousin... glad to hear he has something he can do so well! It's such a tough decision to make, at any age. I know most people chose to have kids.. I wish I could.