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Posted by Rebecca on December 08, 1999 at 15:10:43:

In Reply to: Newly diagnosed Partial Complex posted by Cheri on November 15, 1999 at 15:04:34:

: I am not sure what this all means. I have been told that I need to take Tegretol, but I am scared to take medication for the rest of my life. Why are they just diagnosing me, and what causes these episodes?? If OI have had this all my life, why didn't I know?? Any info will help!!

Hi Cheri,
I hope that my experiences can be helpful for you. I began having Complex Partial Seizures or Temporal Lobe Seizures when I was 14 and I am presently 26. I didn't know for 9 years that I was having seizures. My seizures would begin while I was asleep and they would awaken me. A seizure would begin with a tightness in my chest, tingling sensation in my arm and face, a strange tingling and smell in my nose. As the seizure would progress I would begin to feel that I was dreaming or that I was having deja vu. All this time I would be concious of what was happening. I would say to myself that I am having an "episode" and it will pass. The seizure would last about 2 to 3 minutes and they would occur numerous times throughout the day for more than 2 days. I also would get an intense migraine the first day of seizures. My menstrual cycle correlates with my seizures so that I would get seizures for a few days every month during my period. Different levels of harmones in your body can affect whether you will have seizures. For example, you may have more seizures when you're pregnant.
When I first began having seizures I didn't know that I was having seizues. I was very afraid that I was crazy or that there was a major problem with my heart since the seizure caused tenseness in my chest. So, I first went to a Cardiologist who found that I had Mitral Valve Prolapse which might cause some of my symptoms. He was unable to give me anything to prevent the symptoms. I then went to another cardiologist when I was 19 who said that I was having panic attacks although I was experiencing no fear and he did no tests to make a diagnosis! Finally, as my seizures got worse and were preventing me from functioning at work (age 23)I went to another cardiologist who was smart enough to listen to my symptoms and send me to a neurologist. I knew in my heart that something else was going on. I was not having symptoms from Mitral Valve Prolapse or a Panic Attack. And, I definitely wasn't crazy.
The neurologist had an MRI and an EEG performed. These tests found no seizures. It is not uncommon for an EEG to miss seizures. The neurologist knew exactly what was happening to me because of the symptoms I described. He diagnosed me with Complex Partial Seizures and prescribed 400 mg of Tegretol XR twice a day. Thank god my seizures went away after that! I have not had a seizure since. I am eternally greatful to the doctor who listened to me. Recently, I had an expert neurologist in the Boston area perform another EEG. She did find the seizures. It is very important that you find a doctor that you trust, who will listen to you and who is an expert in his/her field.
Cheri, I don't know what caused me to have seizures but I have my suspicions. When I was 14 I huffed Butane fuel to get high. Not a very bright thing to do. I probably lost more than brain cells. Or, I may have already had the potential for seizures caused by head trauma from forceps used when I was born. Nobody knows the answer. Not even the doctors. My doctor in Boston informed me that Complex Partial Seizures are caused by some trauma to the brain.
There are a lot of side effects that you should be aware of while you are taking Tegretol. Be sure to talk to your doctor about them or talk to other people who take Tegretol. So far, the medicine has done a great job in preventing my seizures.

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