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VNS vs. Biofeedback... thoughts

Thu, 04/20/2017 - 22:45
I'm on my 3rd failed med, with 3 failed "complimentary med" to boot. So I'm looking around. Last year I tried the Keto diet but I just don't have the discipline for it. I gave it a good solid 6 months. So now I'm looking into either VNS or biofeedback. Anyone have anything to say one over the other?

Comments

I'm on my 3rd failed med,

Submitted by just_joe on Fri, 2017-04-21 - 12:31
I'm on my 3rd failed med, with 3 failed "complimentary med" to boot. So I'm looking around. Last year I tried the Keto diet but I just don't have the discipline for it. I gave it a good solid 6 months. So now I'm looking into either VNS or biofeedback. Anyone have anything to say one over the other?#rd failed medication and one complimentary medication.. A big question I have is how long did you take them and did they reduce the number of seizures you had been having. If they reduced the number of your seizures then it was a working medication. In order to find that out one should be on the medication and notine each seizure ofr  a3-6 month period of time I say 3 because thay should tell you is it has reduced them. If it had then adjustments could be done and another 3 month period of time to varify the number and if another reduction in the number of seizures took place. So to truely test a medication it takes 6 months to a year with adjustments being made to the dosage. Remember a medication that works for one person may not for the next and the same goes for the dosage. Some people need little medication. While others like me require the largest dosage th maker will allow to be given. Each person is different and neds different ammounts of everything they use or eat and drink. The KETO diey was created mainly for kids and their parents to make sure the disipline was there. However the Atkins diet is less restrictive and has helped average people teens and up. As for the VNS it also depends on the types of seizures you have and their length.How good of a relationship do you have with your neurologist?? There is a reason for that question. A good relationship with them can give you more information since they can be open with oyu more. Yes neurologists are to put people on one medication and control their seizures. But which medication is it since there are over 60 different medications used to control seizures? Also neurologists also know that not every person will be completely seizure free. Doc and I knew that and I have known that since the mid 1980's. But that didn't stop us from trying different medications and combinations to come up with reductions in my seizures. Or stop us from shortening the time in those seizures or the post ictal time (time to gt back to normal). All the medications I have taken reduced my seizures. Some better then others. But very few reduced the time in those seizures. The one I take now did both and it time after my seizures is preactly nothing. My PCP had qondered why I had been with the same group of neurologists since 1971. In an answer to one of his questions I had a few second delay. He had seen me in my seizures before. Well I asked him what he thought that delay was for. He thought it was because I was looking for the words I wanted to use. I told him it was one of my seizures. His statement was NOW I see why yo have stayed with him.So find a good neurologisy or the one you have and get a good relationship with them. Not everybody will be completely seizure free. Some will grow out of it  Others like my cousin went seizure free for many years but still had to take meds. Others can have surgery. Then there are some that the VNS or RNS will help control their seizures.For me I'll tske s few sceond seizure every 8-14 days and go on with my life. I have more to look at, see and do to worry about if I will have another seizure. Which means I control my epilepsy and DO NOT LET epilelsy contorl me

 I have a VNS. It has made a

Submitted by DaganL on Wed, 2017-04-26 - 00:47
 I have a VNS. It has made a big difference in the quality of my life.  Like medication though it does take time and adjustment so it is  not an instant fix all. They make some need models out there that can keep track of how often the implant fires.  Someone Littles will even adjust the stimulation based on your heart rate increase. I have one of those models. I believe it has  helped me detect a possible seizure. Between the device working on it's own and my ability to use The wrist magnet I myself prefer the VNS as opposed to working with meds.

I just wanted to clarify my

Submitted by DaganL on Wed, 2017-04-26 - 01:13
I just wanted to clarify my earlier post. The VNS is adjunct, it is not being used as a total replacement for my meds.  To me it's a med that can be adjusted without affecting my mood or emotions 

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