I was first diagnosed with epilepsy (TLE) back in 2008 or so. After that I went through quite a large number of medications. It seemed to always be the same story. I would start a new medication, and the seizures would go away for ~6 months give or take, and then the seizures would gradually return. My doctors referred to this as the "honeymoon period" and said that it's pretty common.
My seizures ALWAYS begin with an Aura. The auras seem to almost always play out the same. Usually it will start with just a hint of a feeling that something is wrong. Sometimes it never goes beyond that. Sometimes it progresses to the next stage where it becomes a clearly recognizable aura. In my case it is a déjà vu type of feeling. It's not the exact same as a déjà vu but to this day I've never been able to describe it better than that. Sometimes it stops with the aura, and sometimes it progresses to a more significant seizure.
In 2019 I had the NeuroPace RNS system installed. Amazingly, I went almost 2 years without a seizure after having it installed. My Neurologist actually said I was getting close to breaking a record in that respect. To this day my RNS system has not yet been programmed beyond read-only mode, since I had not had seizures to gather data from. But fairly recently my seizures began again. I'll be going in again in the near future to potentially have the RNS system programmed.
Since being diagnosed, I have always kept things fairly private, but recently I have felt the need to reach out and compare experiences. I'm eager to compare how I have reacted to various medications. I'm curious if any others here also have the RNS system. I'm also eager to brainstorm ideas about what to do during auras. Since my seizures always begin with an Aura, it has served as a small window of opportunity for me to either stop the seizure or put me in a safer spot. It's just been difficult for me, over the years, to understand which actions I've been taking have been successful in stopping seizures at the Aura stage vs. what might simply be placebo or wishful thinking on my part.
I'll probably make separate threads to explore some of that. For now I just wanted to introduce myself. I appreciate communities such as this one and look forward to hopefully becoming a part of it. Thanks!
My seizures ALWAYS begin with an Aura. The auras seem to almost always play out the same. Usually it will start with just a hint of a feeling that something is wrong. Sometimes it never goes beyond that. Sometimes it progresses to the next stage where it becomes a clearly recognizable aura. In my case it is a déjà vu type of feeling. It's not the exact same as a déjà vu but to this day I've never been able to describe it better than that. Sometimes it stops with the aura, and sometimes it progresses to a more significant seizure.
In 2019 I had the NeuroPace RNS system installed. Amazingly, I went almost 2 years without a seizure after having it installed. My Neurologist actually said I was getting close to breaking a record in that respect. To this day my RNS system has not yet been programmed beyond read-only mode, since I had not had seizures to gather data from. But fairly recently my seizures began again. I'll be going in again in the near future to potentially have the RNS system programmed.
Since being diagnosed, I have always kept things fairly private, but recently I have felt the need to reach out and compare experiences. I'm eager to compare how I have reacted to various medications. I'm curious if any others here also have the RNS system. I'm also eager to brainstorm ideas about what to do during auras. Since my seizures always begin with an Aura, it has served as a small window of opportunity for me to either stop the seizure or put me in a safer spot. It's just been difficult for me, over the years, to understand which actions I've been taking have been successful in stopping seizures at the Aura stage vs. what might simply be placebo or wishful thinking on my part.
I'll probably make separate threads to explore some of that. For now I just wanted to introduce myself. I appreciate communities such as this one and look forward to hopefully becoming a part of it. Thanks!