Topamax and negative experiences

My 56 year old son. Jim, is Bipolar. He was taking three medications, one of them being Topamax. The Dr. that prescribed this medication died and the new Drs. thought Jim was doing fine so they continued on with the same medication. Jim became fecal incontinent. We did numerous medical tests to see if this had any basis. None was found. Over a years period (Jim's third year using Topamax) Jim began losing his memory. This doesn't sound too horrific unless you know that Jim has 160 IQ and total recall memory. He never had to read anything more than once and he could quote verbatim almost anything from any page. Total recall of phone numbers and names, etc. At first the Drs said this was early onset of Alzheimer’s. He was being cared for by this time with a battery of Drs. Neurologists, medical, psychiatrists and doing some very extensive testing. Finally it was judged that no, Jim does not have Alzheimer’s. However he continued to quickly decline. He by now was both urinary and fecal incontinent. His speech was slurred and he was unable to bath himself. He required around the clock help. He would ask me questions like, did I go to school? Did we live as so and so town? Then he asked, is my name Jim? This was hard to hear but then he quit talking altogether, was staggering and would respond to telling him walk this way or sit here but little else. Finally the Neurologist told me he was almost certain that Jim had a rare brain disease and it was always fatal within a year. He determined that Jim was in the advanced stages and probably had 2 to 6 weeks to live. I was devastated! Jim was sitting in the office when the Dr. said this and he made no recognition that he heard or understood anything.

I started talking to friends about this and one of them said call her friend a paralegal nurse practioner. I did and she asked me "Why is Jim taking Topamax"? My answer I consider rather stupid now but then it was the truth, I answered "because the Dr. prescribed it". She said, titrate him off Topamax and then call me. I went to his Dr. at the time and the Dr. was most reluctant to take Jim off this medication. He accused me of "playing Dr" and was most insulting. I persisted and said if he wouldn't I would change Drs. Later I understand he took Jim off much too fast and we did have really serious side affects. We halved his dosage every two days and in 6 days he was off Topamax. Jim went into a catatonic state for several hours at a time about four times. There was about 4 days and nights that neither of us got any sleep. He had repetitive thoughts that nearly drove him crazy (His words). The sixth day Jim started talking but then would go into these catatonic states for hours. When he came out of them he would talk and explain some things, then he would quit talking again and he later explained the thoughts were going so fast in his head this was the only way he could preserve his sanity was to just "blank out".
After about two weeks of this intense illness and no help from his Dr. and Jim refused to go into the hospital, in his talking moments he said they would just fill him with sedative drugs and he wanted to get as clear as possible from these. To make a very long story short this was one year ago, three Doctors ago and Jim was relieved from his repetitive thoughts by Fluvoxamine, but that spiked him into a manic phase and eventually he went into the hospital. He is on a complete new regime of meds now but we always research any new med BEFORE taking it. It will never be just "because the Dr. prescribed it" again. By the way, Jim was taking lithium at the time Topamax was originally prescribed and gaining a lot of weight. His original RX was for weight control~! It didn't work but it nearly killed him. I called the paralegal back to thank her but she had left the law firm and no one can locate her. Our Guardian Angel????

I have been on Topamax for three weeks now. I have a genetic brain abnormality that causes severe and frequent migraines. Before being put on Topamax, I was experiencing at least one migraine a week lasting for NINE hours. They were unbearable. I am still working up to my full dosage of Topamax, but it seems to be working. My head is clearer than it has been in some time. At this point, I am experiencing some side effects including decreased appetite (though nothing that I couldn't afford to lose) and tingling in the toes and fingers. Of course these pale in comparison to the migraines that I have been rid of since I have been on the medication. I will repost later if I begin to have negative experiences.