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VNS Theropy
Fri, 01/07/2011 - 03:13Hi
I have had epilepsy since I was 11 years old. (Grand Mal and petit Mal) I am 32 now. I have been on all kind of med to control it over this period. Mainly Epilem and Lamicton with some other drug. Most recent new drug is Kepra. Kepra is making me feel really sick. I will have good weeks and bad. My hair is also falling out. I have a lot of patet mal seizure. Not one week goes by where I do not have one. My last boyfriend broke up with me due to my epilepsy. My work is been effected as is my social life. I am so less mature than that of my friends and just falling into depretion as as time goes by it seems to get worse. I still try to not let it effect my life but sometimes it becomes difficult.
I have heard about VNS theoropy. Every post on this site is more or less negative. Is there anyone out there that has not lost there voice or had negative effectives. I have spoken to my Neurologist about this but he said he does not agree with the proceedure but will refer me to someone. I have a appointment in Feb but am not sure what to expect.
How do you qulify for this and what is the work up. Do you think it is worth it.
Hope someone else out there can help me.
Also does anyone know what else VNS theoropy is used for. IE Bipola
God Bless
Re: VNS Theropy
Submitted by starvingmusician on Fri, 2011-01-07 - 19:20
Hi Olga- I usually don't reply to posters asking about my VNS experiences because I'll be quite honest -- I have a love/hate relationship with the implant. I do not doubt that it has lessened the frequency of my seizures, and it is used as an adjunct therapy (in addition to drug therapy). This did not happen overnight, changes weren't noticed until well into the second year of implantation. I really didn't consider the voice change to be much of a negative. It's a bit of a nuisance if you sing (but could be near devastating if you sing professionally). For me the main problem was that I would have trouble catching my breath every time I was in the middle of physical activity and the bloody thing went off. Every 5 minutes I'd gasp for air for 40 seconds when I was cycling or hiking or fencing. I ended up taping the magnet over the unit to turn it off. Neuro #1 was somewhat OK with that solution. Neuro #2, who took over my care after Neuro #1 left the state, suggested explantation if I wouldn't get with the program. I'm now on Neuro #3. Our first visit we talked. I expressed my concerns, both about the VNS and about medications. The breathing problems he assures me can be overcome through adjustment in the way the VNS cycles. You know, I believe him. He changed the VNS settings and ordered new meds. He scheduled a new EEG. I've since had a visit with his PA, and I see him again in two weeks. I recently discovered that I may be nearing the EOS (end of service) of my VNS -- it was originally implanted in 2003. Will I have a new VNS implanted? I'll bundle all of my other medical complaints (asthma, a-fib, HBP) and have an honest discussion with the new guy about it before I make my decision. My quality of life has improved with it, yes. But can it continue without it? I know I haven't given you a solid "yeah, it's great, you should go ahead and do it". answer. Only you can make that determination.