I went to the neurologist today for an EEG. I was not expecting to see this neuro, because I have an appointment with another neuro in May. But she saw me and spent some time with me. She even went over the EEG with me.
She thinks that I have epilepsy in the form of simple partial/focal seizures located in the temporal lobe but possibly originating from other locations as well. This is in addition to migraines, which can explain some, but not all of my weird symptoms.
She wants me to do a trial of Trokendi, which is the long-acting version of Topamax.
I feel good about this because I feel that it explains many things. The drug trial will also be helpful for diagnosis, perhaps, although my symptoms are episodic. Eventually a partial seizure diagnosis may even lead to a vagal pacemaker, which is an appealing option for controlling inflammation, as well as seizures. It's a bit strange thinking that I have epilepsy, but as long as they don't take my driver's license away, I can deal. 8)
I take a different med...and it is successful in controlling mine. As to driver's license:
For 15 months I GPSed, iPhone mapped, AND printed mapquest maps to my destination when I left my home. I was paranoid that one would last longer than I was told (not to mention the confusion following the event)! I NEVER needed one of the safeguards. It kept me comfortable. I avoided long trips. I had a 5 mile circumference from my home I tried to hold to. Twelve miles was the furthest I drove.
About 15 months ago I resumed normal excursions. btw: During that first period of time I continued to travel by air and take trips to friends' homes, or with friends to destinations.
I NEVER asked a doctor about driving. I, too, was scared to death re: my license. I was so careful because I thought if anything happened, the problem itself would mushroom. I managed (and I'm old). You will manage. Just be careful and keep quiet. btw: I drove slower, and kept distractions to a minimum. I use my phone for my music so I don't fiddle with my car's screen. I have blue tooth...so all is self detecting, etc.
Good luck..oh...btw: the 8 years I noticed my "lost time" (I called them) I didn't know what it was and I was not so cautious. Finally I became concerned enough to mention to a doctor. Never DREAMED it would be seizure disorder. NOTHING to do with SjS btw. I thought it had something to do with Alzheimer's. I was floored with the dx.
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What medication do you take? I am not sure that Trokendi is the right one for me. Actually hoping that this leads to a vagal pacemaker someday...
By the way, the Epilepsy Foundation list Sjogren's as a cause of seizures, and lists partial seizures as the most common type, so there could be a connection to your sjs. My first seizure-like issues started around the time that my nasal dryness became a real problem, although nearly a decade before my dx.