Living with Epilepsy/Seizures

When I was about 17 and 18, I started to feel a heat sensation all over my body, a deja vu feeling, see flashes, and I would be out of it, and sometimes I could not remember things. At first I ignore what was going on and thought I was just going through some teenage hormonal thing because everything was changing any way since I just graduated high school.

After a while the episodes became more frequent and I got scared and had no idea what was going on. I told my mom. She told me to go see a therapist. Go figure! The therapist happens to be a Neurologist. I spent hundreds of hundreds of dollars for each session for several months talking about my feelings and this Dr had no clue what I was describing.

Well, I finally realized therapy was not the answer and I would just live with what was going on and told my mom I was all better. In fact it got worse and worse over the years and more frequent. Not until I met the love of my life did my life change. I met her when I was 19. A couple of months after we soon started living together. I describe what was going on to her. She was very understanding and compassionate. One day she noticed I was doing something funny I was smacking my lips, staring off into space, and all the color had left my face. She kept screaming Dara, Dara, but I would not answer. She asks me what was wrong. I told her I was feeling the déjà vu feeling, heat sensation, and other feelings I had described before. This happened a couple of times more and she started to see more and more things odd like twitching in my hand and still no response and I would have a glaze in my eye.

She said we need to take you to the Dr. we went to my family Dr and they suggested I go to a Neurologist. The Neurologists pin pointed right away I had partial complex seizures based on what she and I described. She ordered a battery of test which included sleep tests, EEG’s, MRI’S, Cat scans, Blood work, and some maybe others, I have no clue. Needless to say, the test found no cause for the seizure The Dr prescribes me a medication called Topomax which I hate. I told my Dr. it made my eyes hurt and my vision blurry. Up until I started taking it I hade 20/20 vision and now I have to wear glasses. See the correlation, I do.

Just in the last couple of months I was at work in a meeting and some coworkers saw the seizure. The said I was staring off into space, lips smacking, glaze over my eyes, and I would not respond. They got scared. Got my manager and they forced me to leave work. The funny thing when it is going on I can hear everything that is going on and sometimes I can respond, but it will be like jibber jabber. I recall having a call at work where I had a seizure and I was repeating a fax number and I was writing it down as I was having it and speaking it. After it was over the lady was still on the phone. She ask me to repeat the fax number I was out of it for a minute and forgot the fax # and had to look for it. I found it and gave it to her. She said that is not the same number you gave me. I quickly covered up and said oops I must be thinking of another fax, I was so embarrassed. After the call was over I look at the piece of paper I had wrote on and the numbers where right, but all in different order, it was weird.

Just recently after years of seeing this Dr. I decided to pursue another Dr. Currently, this new Dr. just recently ordered me a MRI where she discovered I have a pineal cyst which supposedly cannot cause seizures, but from reading many articles where many seizure patients have pineal cyst, but they cannot find a cause for their seizure. Would no one see that maybe this could be a correlation? I also suggested maybe a neck injury with arthritis could be causing my seizures by putting pressure on my head or maybe it may be cause my migraines No one wants to listen to how I feel. If you cannot find a cause for these seizures maybe there needs to be new research to see if there can be and new cause. I had this same problem years ago when I was real little when they had no clue what Irritable bowel syndrome was and they thought I was crazy and now everyone knows what it is and the causes and back than as a child I told the Dr. and he did not listen. Now I am at the point where I am on 2 seizure medications to try to get me off one of the meds. So right now I am on Lamictal and Topomax. I just feel frustrated, scared, and don’t want to be on medicine the rest of my life.