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Medical Forum / Diseases and Disorders / Epilepsy / August 2004New on this group
while surfering the newsgroups, I came across this one. I was diagnosed with epilepsy at age 9 months after having, Viral Meningitis, Viral Encephilitis and either one or both together. I really do hate writing these things so lets just say. I have been on, Tegratol in 1976, was on Phenobarb, Dilantin, Depakote, and ativan (for a month and it worked) but the doc took me off it as it was "addictive". I am currectly on Tegratol XR 400MG bid, Lamictal 200 mg BID and topamax 400mg Night time. I had the VNS implanted in 1991 at Temple University Hosptial, would love to see if there are any of the orgianl Patient Board around here, and had right hippocampus removed in 1999 at Kaiser Redwood City, CA. I went from about 6-10 seizures a week to on average 1 yr. I am trying to get a support group started in my area, can't beleive there isn't a chapter here. Just wanted to stop in and say hi. My homne email is take out the nospam NOSPAMiamrewired@comcast.net Chris Augusta GA > while surfering the newsgroups, I came across this one. > I was diagnosed with epilepsy at age 9 months after having, Viral [quoted text clipped - 19 lines] > Chris > Augusta GA Hey there, There are certainly others in this newsgroup who have been there as well including neuro surgery and VNS implants.  SignatureTake care. Bye, Marco > while surfering the newsgroups, I came across this one. > I was diagnosed with epilepsy at age 9 months after having, Viral [quoted text clipped - 19 lines] > Chris > Augusta GA Hi Chris The EFA might be of some help with that support group. Take a look at: http://www.epilepsyfoundation.org/aboutus/loader.cfm and that will lead you to the Georgia organization. http://www.epilepsyga.org/ Good luck Bob > > while surfering the newsgroups, I came across this one. > > I was diagnosed with epilepsy at age 9 months after having, Viral [quoted text clipped - 31 lines] > > Bob Hello Everyone, I'm new to this group. I have temporal lobe seizures, had surgery twice and just had the VNS surgery in April 2004. The VNS is at 1.5 now and I'm going to have it turned down. The primary reason for obtaining the VNS is my depression and it's worsened it seems. Anyway, I have one G.M./month usually and am changing my meds back to tegretol and lamictal. Was on Keppra and trileptal since 1993 (first surgery) and started downhill then. I think the VNS has to be pretty high to help and I don't know how folks deal with the headache. I'm a 51 year old female with seizures since I was 21. Trust my doctor and surgeon, except I had to beg my doctor to put me back on tege and lamictal. We all need to hang in but it's harder and harder. Sue email is:wanemaker@aol.com > Hello Everyone, > [quoted text clipped - 10 lines] > lamictal. We all need to hang in but it's harder and harder. Sue email > is:wanemaker@aol.com Hi Sue I was sorry to see that you haven't had a response as yet. I don't have the personal experience to help with those questions, but perhaps we can draw some other people into the discussion. OK? :-) Bob > > Hi Chris > > [quoted text clipped - 22 lines] > lamictal. We all need to hang in but it's harder and harder. Sue email > is:wanemaker@aol.com If I did it right I cut a part of an Older Post Dave Naess did here a few months ago. He was our regular poster on the VNS device, but may be away since there were no posts on your thread. If he Didn't reply to you directly, here are some Links he posted that he maintained some months ago. If you go to the main site, and find his Guestbook, or a Communication link, you can write him a Note and he may write you back Directly, *or if he finds your older message still up on his server he might reply here. He can likely write you Direct if you post any questions on his site, easier, since he travels between the U.S. and Canada and might be more likely to see his Mail while he's on the Road. G. Older post piece --> Howdy GR! HowdyDave http://www.howdydave.com The VNS From A Patient's Point Of View http://www.howdydave.com/vns.html HowdyDave - Airlinks http://www.howdydave.com/airlinks/ HowdyDave - Maritime http://www.howdydave.com/maritime/ The VNS, Airlinks & Maritime sites are all accessable by clicking a button on HowdyDave (top of the list.) -- Dave ???? http://www.howdydave.com > > > Hi Chris > > > [quoted text clipped - 51 lines] > The VNS, Airlinks & Maritime sites are all accessable by clicking a button > on HowdyDave (top of the list.) Thanks Everyone! I sent Dave a note directly, perhaps I'll hear from him. Had the VNS turned down today to a level I think was better. As I read on another thread "felt great as it was being turned up". It's at .75 milliamps now, .30 hertz, 500 microseconds pulse width. If that's not the magic "frequency" I'll go down to .50. Thanks for all the input and help! sue > > > > Hi Chris > > > > [quoted text clipped - 60 lines] > "frequency" I'll go down to .50. Thanks for all the input and help! > sue Hi Sue When you posted the other day at the end of another post that was only about finding help in Georgia, I was afraid your post would get buried in the other materials so I responded & changed the name of the post to "Re: New on this group - 2 surgeries, VNS". At the time I did that, I cc'ed HowdyDave and was hoping he would say something. He's been spending all his time over at http://brain.hastypastry.net/forums/forumdisplay.php?f=133 so you could email him or bug him there if you wanted to. Good luck! Bob
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