Epilepsy

[gofish]

I'm on Keppra, Zonisamide, and Lamictal still have sz and they are not even close to predictable as to any triggers any more. Sz can be just visual or complete black outs. My doctor is really pushing for the Vagus Nerve Stimulator, but "SOME" of the stories I read give me doubt. Are the stories for real!! I was given the video by the doctor to watch but the video is made by the same company that made the VNS and it is really slanted. I have alot of faith in my doctor, she has been a major help in my life and has reduced my seizures from a 100 a month to 30 a month. Even though this message is going out to someone or anyone that I will never meet and there is no face to all of this, it is very hard to put this in print, I'm scared. I'm 60 years old and my seizures make me feel like I'm much older. There is no way I should be having sezuires at this age. Seizures are not who I am, but they darn sure do take up a chunk of who I am trying to still be. Enough of that stuff, any one got thoughts on this VNS STUFF? Thank You. gofish David

[danielwoodward]

Hi there, im from new mexico and my son had a stoke inutero four years ago. He was diagnosed w/ cerebral palsy and epilepsy, for the past three years he was on tegritol,topamax,nuerontin, and keppra. My son continued to have uncontrolable seizures to the point that we would have to take him to the hospital because they would last any where from (30minutes all the way to an hour and a half). Doctors would have to admit him into the hospital and this continued to happen time and time again. Finally our nuerologist said Mom I don't know what elese to do for your son and his seizures are so out of control that not even the medication is helping him. So i asked him what do you recommend? He replied Im sending you and YOUR SON to HOUSTON! I cryied. To make a long story short he told me that the neurlogist up in houston would be talking to me about a Vegus nerve stimulator. He said this would help to control the seizures. when we got up to houston in august of 2007 he told me with a stern voice that the seizures were so bad that the stimulator would not work for him, if would be just like putting him on another medication. So i said what are you going to do then? HE replied BRAIN SURGERY! My son had a left Functional Hemispherectomy on July 26th 2007 and since then has not had another seizure since then! Let me tell you it was very tramatic for myself and my whole fAMILY but it was worth the 7 and a half hours of surgery that it took and the great teAM OF DOCTORS surgeons and the whole staff at TEXAS CHILDRENS HOSPITAL IN HOUSTON TX. So as far as the vegus stimulator i personally would NOT recommend it. My son is now four and he is doing great good luck and our prayers are with you.

[cat16]

I chose to have a VNS implant surgery earlier this year for treatment resistant depression, and it is working slowly but surely. I work with a client at my job that also has one for epilepsy, and I have seen improvements in the length of time seizures last and the length of time between seizures in the last year with new settings.
The surgical recovery seems to be a little downplayed by the medical field, but it has been worth everything to have the results that can be acheived, for both applications. I believed that it would be unbearable to waste decades living with the unpredictability of what I knew was wrong. It is stressful to anticipate any surgery, but if you believe you are making an informed and positive step in caring for yourself through the VNS implantation, you will simply feel more empowered. VNS is considered an adjunct therapy to medications taken for TRD and seizure disorders. I would encourage you to take advantage of all that modern medicine has available. Your doctor is trying to help you continue to acheive a more functional and meaningful lifestyle.

[gofish]

Well, I went for the VNS inplant. The surgery was a piece of cake. The 6 weeks of no activity after the surgery was more than I was told about though. The VNS has nearly removed the "fog" like symptom I lived with all the time. That fog like symptom kept me from feeling like I wanted to get involed socially because I made so many verbal mistakes and I becamed verbally aggresive and then would have many siezures. If I keep my physical activity at a very low pace and get a rediculously huge amount of sleep and rest, my siezures drop way off and I go as long as 6 days w/o a siezure. It is not in my ability to stay that inactive, I am put together that way, it is not part of my personality, period. MY LIFE WAS NOT MENT TO BE LIVED AS SPECTATOR BY ME. Aside from my meds my VNS is all I have to help control my siezures. We are at 250 millamps at regular intervals and I use the maget to help stop seizures when I have them. The maget is set at twice the maximum setting I normally get, so it is a real punch and causes me to cough and choke, my eyes water, pain in my neck, but sometimes it stopes the seizure. Not all my siezures are controlled my the VNS, but I am better than I was. I will get the best benefit in about 2 years I've been told, and I am willing to stick it out. My advice to anyone whose doctor is talking to you about VNS,listen, get the facts, call the VNS people, even talk to someone your age and get the feed back. GET THE FACTS. Then make an informed decision that is right for you and those who care and love you. My best wishes, try to be strong. gofish David

[gofish]

This is "gofish" and I just wanted to post an update. I looked at my last posting, first of all my VNS was set at 2.0 milliamps not 250 milliamps. Under the right conditions 250 milliamps could kill. I am very sorry about the misinformation. Since my last post we increased my VNS setting to every 3 minutes x 2.0 milliamps. Now getting this every 3 minutes instead of 5 minutes is a real jolt. It is more difficult to adust to befor the next shock occurs,I still have the coughing, choking,and need to swollow to clear my throat. When the VNS goes off it causes a change in my voice, and quite often it is easier to not talk at all. Sometimes it wakes me up. During physical activity I may strain a bit on the leads in my neck and the scare tissue around the leads gets strained too, the left side of the neck is sore for a day or two. My doctor had to increased my Lamictial by another 100 mg per day because my Sz's still are not under control,some days I have none, other days I have 7 or so. There are still many up sides to all of this.I do not live in the fog any more! I am 60 years old and in 4 months I will be 61 years old. Most of the time I know where I am, what I'm doing, remember my train of thought, answer my wife,enjoy sunrises,sunsets and in general can still kick you know what. The VNS is not the answer for every Sz disorder. Explore all the possibilities with your doctors, loved ones. Most importantly look inside you for what you want and expect from this type of operation.

[dnw122663]

My doctor told me that the success rate was about 30%. Watch your step. I said no. I take lamictal, 600/day, and zonegram, 300/day. My seizures were reduced from 5 a day, to average of 1 every 15 days. For that (simple partial), I will put up with it. Driving ... shouldn't, but have to. I'v learned to deal with it. I'm 48. Still, I said no to surgery. Good Luck.

[Rachel]

HI I had no choice I had to have the VNS put in. I am 35 yearsold but was 34 when it was in. I was having 10-12 or more szs a day an dit kept getting worse. I have complex Partial szs. I had the same DVD and didn't watch it. I threw it out along with most of that info. I got given more becuase after it was put in they decdied to make me a VNS Amabassador for Cyberonics for the state of AZ. My szs are now down to 5-7 every 2 months. My neuros goal is to make me sz-freeo nteh VNS with lower doese of my drugs, he is removing me for m the Neurontin and then I will be on 3 others and htey are already low doeses.

IT is in my opinion that the VNS will help you down the road. IF you cut teh szs in half from 100 to 60 then teh VNS can cut that # in half again and lower your sz ciunt even more. Trust me on that one. I was miserable.

THen again everyone is differnt. Some people respond to it and otehrs do not. so it is something that you really haveto thinnk about and think aobut what kind oof szs you ahve. IT mainly helps people wiht partial szs wiht auras so they can swipe the VNS and aboort the auras or szs. people with generlaized szs will still get relief even though they cna't use the magnets that come with the kit you get after surgery.

I wear my wrist magnet all teh teim and never take it off escept for showering or anythign where water will come up above my wrist. I ahve a pager style magnet that I where on my person usually on my pants pocket or my waist abcnd so if i need to move faster I can jsut grab it instead of swiping with my wrist.

I think it is worth it it has made a HUGE dufference in my life, and has given mopst of it back. i can't drive nad probably never will be able to. I got epilepsy from headtrauma from a car accident adn will b able to work afte rhegets me sz-free.

Talk to your doc about it, but it iwll help you out alot.

Rachel

[yvonneloke]

Hi. I have TRD and am trying to get into a clinical study to get VNS surgery. You mentioned the recovery...what was it like? how long do you have to stay inactive? Most of all I would love to hear how your depression is coming along. I have pretty much given up on life. I basically do nothing because of the depression. Thanks, Y