Posted 3/31/2014 10:15 PM (GMT -7)
Can anyone relate to me? I would like to describe my seizures and see if anyone has had similar episodes. If you do please share, thanks in advance.
I am a 40 year old, male, healthy otherwise. Starting about 14 years ago I had times of confusion, not able to find words when speaking, problems reading and writing that lasted for 10 seconds up to a minute. I dismissed this for years until things got worse.
The episodes would be more intense and more frequent. By then the events would cluster into having seizures lasting 10 seconds up a minute sometime for 5 minutes coming and going for few times a day. These clusters would come and go for 2 or 3 days and may not happen again for weeks even months.
As things got worse I would experience nausea where I would want to vomit, this was the onset of not being able to understand someone speaking to me, or able to find words when talking to someone, not being able find words to write or read. I would simply walk away from a conversation or try my best just to end it. I could hide it very well. After the seizure I would become extremely tired and still do. This occurred for a few years until I had a seizure that put me in the hospital. That was the only major seizure I ever had. At that time is when I was put on Keppra. I still experienced seizures.
In the time since I have taken 4 other medications with Vimpat being the most successful. I have seen 4 different neurologists. Have had 4 EEG's, 3 MRI's. I still experience these seizures but they are not any better, they are more intense and frequent. The only positive thing I can say is that the sensation of wanting to vomit has decreased, but still occur. My memory has decreased to the point my wife notices it and have problems remembering planned dates. I have to write things down constantly so I don't forget appointments. I sometimes, not often, have problems remembering conversations that occurred a few weeks or months back.
People don't seem to think I have a seizure issue because I am good at hiding it. My motor skills are not affected, they seem to think if I am having a seizure I should be laying on the ground or something obviously wrong. No one seems to understand. I look normal, act normal, motor skills are as good as any 40 year old can be, even during a seizure.
I want to make them obvious so people will understand when I am having a seizure. By this I mean saying to them "Give me a few minutes, I am having a seizure", But then I am afraid they will want to call 911 or come running, or calling for help, When I Don't need it but just a few minutes to recover.
I have an appointment with a surgeon in two months, but I don't think the risk is worth the reward. I function well physically, can read fine, my writing is okay (has never been real good), my memory has gotten worse, but not sure with aging a bit. I do want to get rid of the seizures, but I am having a hard time worrying with the surgery.
They have located the area of the brain that is affected. It's been there since birth. It's just a 2 small pea sized "gray matter" parts of the brain that are relatively deep in the frontal lob. My neurologist says I am a perfect candidate for surgery because medications have not worked well. He says there is about a 70% chance for me to be seizure free. I am afraid of memory loss, losing motor skills, making things worse then they are
Can anyone relate to me?