HI Rebecca,
When looking into having the VNS did you first look into surgery possibly a LTL or RTL? Or did the tests show you weren't a candidate for either? I'm guessing you had activity on both sides with more than one location of scar tissue?
Steve
--- In epilepsy@yahoogroups.com, "Rebecca" <par_thomas@...> wrote:
>
> I think on my last post about am I being irrational? I did not put enough information. I have only seen this new Dr. one time because I just moved from Charleston, SC to Maine. It is the SC doctors that know me really well. I just Got put on Felbamate, and Topamax in January 2011. Part of the problem with my seizures is for a while it seems as if the medicine is working then they come in clusters and nothing stops them. I have to wait for the cluster to come to see if the meds really work. I have a VNS installed as of Feb. 2011 which needs to be turned up. In the past 2 years I have tried every med you can name and none did the job. I called this new DR, that has only seen me once and told her a cluster is here and I need help. Her answer was to throw onto my other meds neorotin. Just more side effects. As for what kind of seizures I have, I have a rare kind. In fact all the epilogists that I have seen say I am in the 5-10% of people with EP. I have seizures that last for hours. I am conscious but my eyes flicker so fast I cannot see. Example: My DR wanted to see it on an EEG, so when it started I called my husband and got a ride to the hospital. I had 57 seizures in 59 minutes. I never know if they are going to lead into Grands or not so I have to do the best I can. My clusters last weeks my seizures will stop when I go to bed and soon after I awake the next morning they return. I hope this clears some stuff up. Thank you for all your advice.
>
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