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Sensitivity to Vns

Fri, 04/15/2005 - 19:02
Well I am both disappointed yet very relieved. After way too many seizures in the last 6 weeks, for someone who is on three drugs.Feeling very tired, loggey and drained of my usual energy for this time of year and really wanting my life back it was back to the Dr.s Fortunately,my Epileptologist is very patient in my rather tough situation. With a bilateral epilepsy. I felt that my body was having to deal with too many things all at once, VNS adjustments to the different settings every 2-3 weeks, new meds being introduced and all the seizures. So given that my VNS setting was low to start, I had choked badly during a seizure due to using the magnet to try to stop the seizure . We agreed to turn it off. Wow, I feel better already, my body feels much more relaxed and calmer. Leaving me relieved it is off but disappointed it wont work for me, my body is just way to sensitive to it. Thus will most likely have the battery pack removed at some point.My advice to possible VNS people Please make sure you research it and look at all your possibilties. It is not a miracle for all as can be what Cyberonics makes us think. given how many complications I personally have had I and my family wish we had not gone this route . Yet if you feel it will work I wish you the very best with it

Comments

RE: Sensitivity to Vns

Submitted by angel_lts on Wed, 2005-04-13 - 08:36
Do you think the setting was just too high?? I have the VNS and it is turned off for I got sleep apnea from it. I can turn it on when needed which is not too often. But I am still glad it is in my chest.http://health.groups.yahoo.com/group/EpilepsyApproach/Lisa

RE: RE: Sensitivity to Vns

Submitted by Cedar on Wed, 2005-04-13 - 09:33
Angel fire, the VNS was set at the very lowest setting. So there was no lower my EPi. could go and I know she knows the tricks to set it on many aspects. Believe me I wish that were the case butnope. I am disappointed but am feeling much more relaxed overall. I am curious to see how other things are for a few weeks , My intuition is it was too much stimulus even at the lowesr setting . Will see in time. Have you ever heard that it caused seizures? am just curious. Take care.

RE: RE: RE: Sensitivity to Vns

Submitted by angel_lts on Thu, 2005-04-14 - 06:28
Well that is ashame. But you have to remember, if you didnt try it you would be saying, I wonder if it would work for you. Now you have your answer. No I have never heard of people getting seizures from the VNS.I wish you luck on the next choice you make.http://health.groups.yahoo.com/group/EpilepsyApproach/Lisa

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