Glad to be part of the group, my story may be long, but a lot has happened. This is my history; at nine months old, I had a fever of 106. I went into a grand mal convulsion that lasted forty-five minutes and it left me paralyzed on the left side of my body for three days, it left scar tissue on the left temporal lobe. When I was young, I often had a sensation of what appeared to be butterflies in my stomach, I now realize they were petit mal seizures. When I was about 16, the complex partial seizures began. In my late twenties the seizures were out of control. I had petit mal, complex partial, and grand mal at this point. I also had severe migraines. I have taken Dilantin, Neurontin, Topamax, Ativan, Tegretol, Lamictal, Depakote, Klonopin, and Phenobarbital to name a few.
In October 1998, I had a left temporal partial lobectomy with cortical remapping. The surgeon was Dr. Howard Landy from the International Center for Epilepsy at Jackson Memorial Hospital in Miami, FL. The surgery took eleven hours and you’re awake through the entire operation. They would touch certain things and you couldn’t talk, hear, or see. You definitely want to be awake during this operation! I have had only one convulsion since surgery (Feb. ’99). In May 2000, I gave birth to fraternal twins, very complicated birth but they are beautiful and healthy, Massachusetts General Hospital follows my kids development for taking Neurontin through pregnancy. After the kids were born, my fever reached 106.9 and I did not have a convulsion! As I was going into the MRI so the doctors could try to see what was wrong, I asked my mother to go to my hospital room and grab six Dilantin and one Topamax. I swallowed the Dilantin, chewed the Topamax and it worked.
In March 2007 I am diagnosed with breast cancer, I went through chemo, had a double mastectomy, they removed eleven lymph nodes on one side, and I’ll start radiation in a couple of weeks. After chemo, my period stopped and it appears that my auras have stopped as well.
Needless to say, my curiosity is now this: Was it the chemo that took care of the seizures or is it the fact that my period is now gone. If you ask me, a hysterectomy would have been much easier than the brain surgery. I did eight chemo treatments the first four were Adrimycin/Cytoxin every two weeks and then the second was Taxol every two weeks. My Dilantin level was measured throughout the process and was between 1 and 5. My normal level was in the mid 20’s which is considered toxic but I have also been as high as 38, from what the ER Staff told me, that was pretty close to needing a transfusion.
During the Taxol treatment they inject you with benadryl, steroids, Zantac and Ativan at an incredible amount because an allergic reaction to Taxol could be deadly. Benadryl, steroids and any antacid is not good for seizures. My backup to Dilantin is Topamax. Whenever I feel the aura coming on I actually bite into a 100 mg tablet and it starts working within ten minutes. If the aura doesn’t subside, I’ll bite off another piece. A pharmacist once saw that I am prescribed 100mg pills to take “as needed” and he said do you know how dangerous this could be? I take Dilantin 300mg/300mg as well, seems no matter what other drug works for the time being, I always end up back at Dilantin.
Is there anyone else that could possibly have a similar situation going on??
Look forward to any feedback. KAM
In October 1998, I had a left temporal partial lobectomy with cortical remapping. The surgeon was Dr. Howard Landy from the International Center for Epilepsy at Jackson Memorial Hospital in Miami, FL. The surgery took eleven hours and you’re awake through the entire operation. They would touch certain things and you couldn’t talk, hear, or see. You definitely want to be awake during this operation! I have had only one convulsion since surgery (Feb. ’99). In May 2000, I gave birth to fraternal twins, very complicated birth but they are beautiful and healthy, Massachusetts General Hospital follows my kids development for taking Neurontin through pregnancy. After the kids were born, my fever reached 106.9 and I did not have a convulsion! As I was going into the MRI so the doctors could try to see what was wrong, I asked my mother to go to my hospital room and grab six Dilantin and one Topamax. I swallowed the Dilantin, chewed the Topamax and it worked.
In March 2007 I am diagnosed with breast cancer, I went through chemo, had a double mastectomy, they removed eleven lymph nodes on one side, and I’ll start radiation in a couple of weeks. After chemo, my period stopped and it appears that my auras have stopped as well.
Needless to say, my curiosity is now this: Was it the chemo that took care of the seizures or is it the fact that my period is now gone. If you ask me, a hysterectomy would have been much easier than the brain surgery. I did eight chemo treatments the first four were Adrimycin/Cytoxin every two weeks and then the second was Taxol every two weeks. My Dilantin level was measured throughout the process and was between 1 and 5. My normal level was in the mid 20’s which is considered toxic but I have also been as high as 38, from what the ER Staff told me, that was pretty close to needing a transfusion.
During the Taxol treatment they inject you with benadryl, steroids, Zantac and Ativan at an incredible amount because an allergic reaction to Taxol could be deadly. Benadryl, steroids and any antacid is not good for seizures. My backup to Dilantin is Topamax. Whenever I feel the aura coming on I actually bite into a 100 mg tablet and it starts working within ten minutes. If the aura doesn’t subside, I’ll bite off another piece. A pharmacist once saw that I am prescribed 100mg pills to take “as needed” and he said do you know how dangerous this could be? I take Dilantin 300mg/300mg as well, seems no matter what other drug works for the time being, I always end up back at Dilantin.
Is there anyone else that could possibly have a similar situation going on??
Look forward to any feedback. KAM
