Hello there. I'm 39 years old and this is my first post on this site. Like my headline says, my partial seizures returned a few years ago after a 12+ year absence. I just thought I would post this and see if anyone had any feedback. I apologize for the length but here’s a Cliff Notes version of me and my neuro history:
Way back in 1982 when I was 11, I started having typical partial seizures. I would have a flashback/déjà vu feeling immediately followed by the partial seizure where I would stare into space, mumble, tremble, drool, etc. That would usually be followed by a headache and/or drowsiness and I would not always remember the seizure. Doctors weren’t sure what was going on and tests (EEG’s) came back normal. In late 1983, I had a complete seizure, was taken to the hospital and doctors discovered a brain tumor (Grade 2 glioma, left temporal lobe) through a CT scan. That was taken care of with surgery and radiation and then my doctor put me on Dilantin after allergic reactions to Phenobarb and Tegretol. The partial seizures immediately decreased to 1-2 a year, then one every 1-2 years and then my last partial seizure in 1992. I had annual MRI’s through 1993 which were all normal and I quit taking Dilantin in 1995.
Jump ahead to 2005 or 2006 and the partial seizures returned. They’re a little different now. They used to come out of nowhere with no warning. Now, the whole “situation” lasts anywhere from 1 day to 2 weeks. By situation I mean it starts where I have 1-7 days where off and on I feel anxious, panicky, nervous, depressed and/or everything is déjà-vu like. Then, about 50%-60% of the time, that will be followed by 1-3 partial seizures over 1-2 days. I know they’re coming 100% of the time and when they happen, I generally just space out or sometimes yell or mumble. My memory is sometimes a little shady immediately afterward but I feel fine in a few minutes (i.e., no drowsiness or headaches). After the seizure, I’ll have another 0-7 days of anxiety, panic, etc. but no seizures and then I’ll feel fine for 1-6 months.
I did see a neurologist in 2007. He was recommended by my physician but he was horrible. He was a migraine specialist. His assistant asked me 40 questions off a piece of paper and then he basically said “You’re having seizures. Take Depakote.” I asked why I couldn’t go back on Dilantin. I don’t remember his reason but he wouldn’t do that so I didn’t do anything medicine-wise. The only good out of that appointment was I had another MRI and EEG and both came back normal. Oh, and based on the MRI, he said he was impressed with the work the surgeon did to remove my tumor. I haven’t seen another neurologist since.
So, in a nutshell, that’s my situation. I was just wondering if anyone else has experienced anything similar and, if so, what was done to resolve it. Meds? Diet? Other treatment? Or, if anyone could simply recommend a doctor in the Atlanta area, that would be a start too. Any feedback or advice would be greatly appreciated. Thanks for listening.
Way back in 1982 when I was 11, I started having typical partial seizures. I would have a flashback/déjà vu feeling immediately followed by the partial seizure where I would stare into space, mumble, tremble, drool, etc. That would usually be followed by a headache and/or drowsiness and I would not always remember the seizure. Doctors weren’t sure what was going on and tests (EEG’s) came back normal. In late 1983, I had a complete seizure, was taken to the hospital and doctors discovered a brain tumor (Grade 2 glioma, left temporal lobe) through a CT scan. That was taken care of with surgery and radiation and then my doctor put me on Dilantin after allergic reactions to Phenobarb and Tegretol. The partial seizures immediately decreased to 1-2 a year, then one every 1-2 years and then my last partial seizure in 1992. I had annual MRI’s through 1993 which were all normal and I quit taking Dilantin in 1995.
Jump ahead to 2005 or 2006 and the partial seizures returned. They’re a little different now. They used to come out of nowhere with no warning. Now, the whole “situation” lasts anywhere from 1 day to 2 weeks. By situation I mean it starts where I have 1-7 days where off and on I feel anxious, panicky, nervous, depressed and/or everything is déjà-vu like. Then, about 50%-60% of the time, that will be followed by 1-3 partial seizures over 1-2 days. I know they’re coming 100% of the time and when they happen, I generally just space out or sometimes yell or mumble. My memory is sometimes a little shady immediately afterward but I feel fine in a few minutes (i.e., no drowsiness or headaches). After the seizure, I’ll have another 0-7 days of anxiety, panic, etc. but no seizures and then I’ll feel fine for 1-6 months.
I did see a neurologist in 2007. He was recommended by my physician but he was horrible. He was a migraine specialist. His assistant asked me 40 questions off a piece of paper and then he basically said “You’re having seizures. Take Depakote.” I asked why I couldn’t go back on Dilantin. I don’t remember his reason but he wouldn’t do that so I didn’t do anything medicine-wise. The only good out of that appointment was I had another MRI and EEG and both came back normal. Oh, and based on the MRI, he said he was impressed with the work the surgeon did to remove my tumor. I haven’t seen another neurologist since.
So, in a nutshell, that’s my situation. I was just wondering if anyone else has experienced anything similar and, if so, what was done to resolve it. Meds? Diet? Other treatment? Or, if anyone could simply recommend a doctor in the Atlanta area, that would be a start too. Any feedback or advice would be greatly appreciated. Thanks for listening.
