I have a VNS need help on side effects

Re: I have a VNS need help on side effects

Submitted by Holly Ann on Tue, 2006-10-31 - 23:26

Mike, I sort of know how you feel. In 1999 my seizures were actually diagnosed,{after 7 years of nobody being able to know what was going on}. My doctor said, "Holly when you have a seizure its like a firecracker going off that won't stop also,their is no place that your seizures originate at too so surgery would be useless}.I was told their was an implant that may help you.My seizures are called "status epilepticus" and I have to be put in the hospital.So I had one put in in 1999.Mine went off every 5 minutes for 30 seconds.I tried using the magnet a few times but other than me feeling it go off it wasn't that effective.So I didn't use it.I take alot of meds daily also.My voice would change when it went off to a low unclear sound.This year I had a newer verion put in and after a few months my doctor turned it off.He said he didn't think it was doing anygood.For about two months everyone said Holly lower your voice,I couldn't tell that it sounded any different.I think the vibrations have some sort of effect on your vocal cords, cause I was always worried I'd lose my voice.Doctors always told me don't worry because the wire is hooked to your vagus nerve not by your vocal cords.Maybe you should get another opinion to be safe.Maybe get some info online about ways to relax or calm your vocal cords.Talk only when you need to,like maybe its just really strained.I was just told they can take it out but leave the clamp in.My wire just looks like a vein and I can hold the device and turn it over if I wanted to.My doctor wrote a letter and I had it signed by a judge that states wearing a seatbelt could cause it to disconnect also.I'm 37 also and doctors/residents always ask me,"have you ever thought about getting a stimulator.I get upset because that means they're treating me and don't even know my medical history{they always have my records}.I've never heard of someone that this implant has worked for.I think doc's just take the easy way out of trying to decide on meds ect..I know alot of our age bands/lead singers are either worried or experiencing vocal problems. Do you like pearl jam? They help me when I'm having seizures and I know Eddie Vedder drinks alot of warm tea now.He smokes also,I saw them in san diego this summer he had both menthol and regular cigarettes.He tries to be safer now.I think he even turned to american spirits{brand}.He drinks a certain kind of tea you should look on their website it may say.I wish you luck and hope you like pj! Holly