46085 full
Data Quality: 1 star
  • Gender: M
  • Age: 36y
  • Duration: 35 yrs
Quality of life:
  • Mental: Moderate
  • Physical: Mild
0 seizures
262 weeks ago


Male, 37 years
Henderson, KY

Primary condition
Epilepsy and 6 more
First seizure
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About Stormborn

I am 31 years old. I am married and have 2 children. In the past I have had a horrible experience with Epilepsy and other medical conditions. The Epilepsy is finally under control with medication. I feel like I finally have a life again, and a chance at a better one. Now, if I could just find a job...

As a child I would often have "staring spells". I would sometimes hear noises, almost like someone whispering in my ears, or wind blowing across them. I would see... rotating lights... crawling... across my vision. I would sometimes switch from very angry, to very depressed and quiet, sometimes within seconds.
I was given several tests, including CAT scans and an EEG, which came back negative. Because of my symptoms I was put in a mental hospital a few times, though thankfully never for longer than a week. I was a smart kid, I knew what the Psychologist wanted to hear, and that's what I told him.
As I got older, the symptoms continued, but I got better at dealing with them and so they were not as obvious to my parents and teachers. I was only put in the mental ward once as a teenager.
At the age of 19 I had a few seizures, but these were different. I actually fell and lost consciousness. I was living alone at the time, so I was able to hide it pretty well. I was afraid they would put me back in that d*** hospital. I finally told my doctor about these "spells". I also told her she would want the police there before she told me if she decided to put me in the hospital because there was going to be one hell of a fight.
She sent me for another EEG, again, negative. But they stopped for almost a year.
I finally decided to go to a neurologist when I was 21. He did an ambulatory EEG (3 days, you carry the monitor with you everywhere you go, with your head wrapped up to keep the electrodes in place). It showed "spiky" brain waves, but I didn't actually have a seizure during that time. He decided to do a regular EEG again. This one was positive. That's when I found out that a negative EEG doesn't necessarily mean you don't have epilepsy, but a positive test is 100% proof positive that you do have it.
After 16, 17 years of occasional hell, I finally had a diagnosis. A reason for the darkest times of my life. Unfortunately, things got even darker. Over the next few years, things got much worse. There were times when I would have dozens of seizures a day. I was put into the hospital for a week, with an EEG connected the entire time. During that week it recorded more than 200 seizures of differing types, some I wasn't even aware of. My wife left me.
During this time of my life I had different types of MRI's, 2 kinds of PET scan and multiple CT scans. They didn't find anything. Not one thing physically wrong with my brain. There is no known cause for my epilepsy.
Using a combination of Depakote and Keppra, I was able to achieve complete control for a few years. I even went off the medications. When I was 26, newly re-married with a second child on the way, they started again. Worse than ever. I was put into the hospital several times. The ER quit doing x-rays of my chest unless I had been hurt very badly. They couldn't tell the difference between new cracks in my ribs and where old ones had healed up. I broke my arms, broke a collar bone, hit my head so many times I can't tell you how many concussions I had.
The new neurologist tried me on every medicine there was. Nothing helped, and some of the medications had side effects so bad, that when combined with the epilepsy I was reduced to sitting in my recliner and crawling to the bathroom. In 2009 my 3 year old son saved my life. I fell and hit my chest on the side of the bathtub, as the seizure ended and I regained consciousness I realized that I had slid down the bathtub and my chin was caught on the side. I was so weak I couldn't move and I couldn't breathe. He just happened to come to the door. Somehow, he realized what was wrong. He crawled between me and the tub, and stood up. I'm not sure how he had the strength to lift a 200lb man, but I thank God he did. I still remember waking up from another seizure, and hearing him running down the hall screaming "Daddy's dead, daddy's dead".
At the end of 2010 the doctor tried a newer medication, one last try before we started looking at surgeries. He put me on Lamictal XR, 200mg x 2 per day. The seizures stopped. I have not had a seizure since January 24th, 2011. I have my license back. My wife and I just celebrated our 6th anniversary. Life is hard, I don't have a job. It's hard to get one when you have no work history, especially in times like this. But I am alive, and seizure free. I have a wife who has stuck with me through everything. I have 2 wonderful children. Life is hard, but life is good. I pray it stays that way.

I also have a few psychological problems. I have OCD, I often have to... perform a few rituals. If I feel specific textures or make certain movements with one of my fingers, I have to do the same with the other fingers. Items that I use often have to be in a specific place. Not necessarily in the same place every time, but a specific place. This may not sound like much... but spending 30 minutes trying to make yourself feel balanced can be a real pain. 

Another is what they call "Adult onset Attention Deficit Disorder". For me and for my ability to work, this is probably the worst after epilepsy really. I had a job for a while, and it was great because I was constantly having to switch tasks. I didn't have to concentrate on one thing for very long. But now I'm looking for a new job, and most aren't like that. I'm scared to death because it is sooo hard to just concentrate on one thing for more than a few minutes. If I happen to see or think of something else, I'm gone.

I had a psychologist tell me that I was severely depressed. Well no kidding. Who could imagine that? 

One more problem I have: my joints, especially my knees and feet. The meniscus, the cartilage between the upper and lower bones of your leg, is wearing down and has torn a few times. I've had one operation on my left knee and two on my right. I have a hard time walking long distances. After my wife drags me to Walmart or the mall I come home and have to sit, doing nothing. Once I sit down they stiffen up and it is hours before I can walk anywhere. 

As difficult as my life has been, I know that God has a plan for my life. There is a reason I was made this way. I have a wonderful wife, and two children I love with all of my heart. My family is amazing, my mother helps us out whenever she can. So does my brother. I've had aunts, uncles and cousins help me so many times, I can't even come up with a general idea of how many times. They've helped when we needed money, they've helped me get to Dr's appointments, sometimes driving several hours, even going on overnight trips. Again, Life is hard, but life is good.


Comments: 14 updates, 1 for others
Member since: May 23, 2012
Last Login Jun 25, 2012

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