ADVERTISEMENT

Partial seizures-newly diagnosed any help would be appreciated

Hi,

I was recently diagnosed with simple partial seizures. They originated with a simple partial seizure that spread and caused me to faint and hit my head very badly. I was at first dealing with a concussion and the seizures so it was difficult to diagnose at first. I have had an MRI, MRV,MRA ( all fine) and my first regular EEG came back fine. My second regular EEG showed some focal slowing in the left temporal lobe. My sleep deprived EEG came back abnormal but my 24 hour EEG came back fine. 

Both of my neurologists agreed on the diagnosis of partial simple seizures because I was getting 2-5 second visual blackouts without loss of consciousness, followed by an unusual unpleasant smell, followed by a pressure headache. This was up to 5 times a day.  I also stopped driving after the accident.

I started Topiramate back in March..starting at 25 mg...titrating up to now 150mg. Since being on Topiramate, my auras have changed form a little. Sometimes I still get the visual blackouts, sometimes they are shorter, often I just get the strong "smell", a few times I have felt like I was "watching myself" for a few seconds, and often I get a very strong pressure in my nose..by the bridge. It almost feels like a burning...but not like food burning..like running outside in the cold and then breathing in burning. While on 100 mg I hadn't been having many visual blackout but still many auras of smell, pressure, etc...since being on 150 mg I have noticed they have returned to more of the original visual blackouts. 

I do not know anyone else who has seizures and I do not even know if these experience sound like seizures that others have experienced. I just call these "episodes" There are no support groups in my area. I haven't told any of my colleagues or friends because there is such a bad stigma attached to epilepsy and in my career, I can't have people know that I am dealing with this.

Luckily I have had minimal side effects on the Topiramate.  I have been taking folic acid and eating bananas to al with the minor feet tingling.

Please help if you can. Any advice would be appreciated..especially with regard to dosage, similar experiences with auras, or what exactly is a partial seizure.   Thank you!