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[suspender]

    Am I allowed to say how in the hedoublell pitchforks?  As before, my vns lets me live out of the fog. But it does not completely stop or reduce the severity of my seizures all of the time. After every adjustment to my vns I set in my docs office for 20 minutes to see how I will tolerate the new setting. I ALWAYS tolerate the adjustment fine. It's the 2 or 3 hours later that the problem begins and becomes worse over the next few days. The muscle spams, choking, hoarseness and unable to catch my breath start and become worse and I tolerate it. But since my seizures have become a little bit worse the setting is now at 2.00 ma for 30 seconds every 2 minutes. Actually this is a low setting, younger people can tolerate a much higher setting. I am definitely not a younger person I just haven't grown up yet. These engineers and doctors  of cyberonics  are suppose to  be educated and ethical and do understand that every person taking a medication or a medical implant device will react differently and that we are not cookie cutter duplicates. I knew when I decided to get the vns it was no cure-all. The success rate was like a bell curve. The younger you were the better chance of success. If I could ever find the words to clearly and truly paint a picture of the fog I lived in before my vns then others would understand. My vns does not control my seizures but I stay out of the fog and because of that my vns is my friend. BUT cyberonics lied with partial truths, lies by omission, and misinformation and just plain not releasing or giving  out information at the time they learned of performance and safety issues. Thank you I'll get off my soap box now. And good night.

[Birdbomb]

    Am I allowed to say how in the hedoublell pitchforks?  As before, my vns lets me live out of the fog. But it does not completely stop or reduce the severity of my seizures all of the time. After every adjustment to my vns I set in my docs office for 20 minutes to see how I will tolerate the new setting. I ALWAYS tolerate the adjustment fine. It's the 2 or 3 hours later that the problem begins and becomes worse over the next few days. The muscle spams, choking, hoarseness and unable to catch my breath start and become worse and I tolerate it. But since my seizures have become a little bit worse the setting is now at 2.00 ma for 30 seconds every 2 minutes. Actually this is a low setting, younger people can tolerate a much higher setting. I am definitely not a younger person I just haven't grown up yet. These engineers and doctors  of cyberonics  are suppose to  be educated and ethical and do understand that every person taking a medication or a medical implant device will react differently and that we are not cookie cutter duplicates. I knew when I decided to get the vns it was no cure-all. The success rate was like a bell curve. The younger you were the better chance of success. If I could ever find the words to clearly and truly paint a picture of the fog I lived in before my vns then others would understand. My vns does not control my seizures but I stay out of the fog and because of that my vns is my friend. BUT cyberonics lied with partial truths, lies by omission, and misinformation and just plain not releasing or giving  out information at the time they learned of performance and safety issues. Thank you I'll get off my soap box now. And good night.

[Dispatch]

 

I love fact based posts!!!

Suspender--I am really happy to hear you've had some success with VNS--it's always great to hear things like this!  Sorry to know you got to be part of CYBX regular routine.  (:

[NancyB]

Well, welcome suspender! And welcome to the world of 'cybersucks'. My sister Judy had that device implanted for her seizures and it almost killed her, I too have seizures, but not that device. What's really amazing to me is not just the lies that cybersucks told the public and potential 'victims', but also the amount of lies they got by the FDA to get this device approved. I know there are people that this device apparently works for, and more power to them. But, there are many who it DOESN'T work for and I am sick and tired of this company not accepting that there just might be a problem. I am also tired about them lying about the problems they know about or blaming it on everything BUT the device. Anyway, HAPPY LABOR DAY and WELCOME!!!         NancyB

[robotgirl]

I read your message, and i can totally relate. I have temporal lobe epilepsy (as far as I know) I have not had eeg test where you have to stay for a few days at the hospital. I have just had reg. eeg and several mri"s.
had my implant in oct.2006. had it turned on jan. 2007. turned off oct.2007. Going to get it explanted soon. I wish that it worked for me. Sometimes I hear great things from others. As uncomfortable as it was on, I wish i were one of those people. I could drive, work, and take better care of my husband and schnauzer.
As soon as I woke up from the surgery, I said, "what did you do 2 yourself?"
We cannot explain to anyone other than each other on this site how strange, and uncomfortable this implant is. What kind of seizures do you have? I have complex-partial. the worst thing I do is spit on  myself. I have not had a #1 or #2 accidant yet. My husband says I cry, and hit things. mainly with my left arm. Guess it's cause' of the lesion on the left side.
Changing settings is tricky b/c like you said, it is not bad when we are there, but then we go home and CAN'T BREATHE!!!

[NancyB]

The kind of seizures I had, and I do mean 'HAD' because I haven't had one since taking Dilantin 3 times a day, is the kind where you completely black out. The last one I know I had was just before I started this medicine, and I remember being in my living room at about 8 o'clock in the morning, getting up to get another cup of coffee, and then finding myself lying on the kitchen floor. I got up off the floor, and just sort of looked around, trying to find out some reasonable explanation as to why I would all of a suuden decide to take a nap on my kitchen floor instead of the bed, and then I noticed my head was hurting pretty bad, so I went to sit on the couch and just happened to look up at the clock and noticed over 3 hours had passed. I still had no idea that it was a seizure that I had, untill I had one in a grocery store, and after that one I found myself in the back of an abulance, feeling very confused and wondering why someone wouldn't turn that da__ siren off, because it was giving me a headache. Then one of the ambulance guys started questioning me, asking me how long I had been having seizures and what kind of medicine I was taking for them which caused me to really panic and I began arguing that I don't have seizures and got myself so upset that I had another one. I had alot of previous experience with seizures, though, because my mom had them since I was a child. They do take a little getting used to, and untill you gain confidence in whatever treatment you decide upon, they can be real nerve-racking. There are so many people out there with worse afflictions then this will ever be, and those are the ones that I feel bad for. For me, personally, it's just another part of my life that I have to accept, and I do, and that makes it a little easier.

[suspender]

    Hello everyone, I am sorry it has taken so long to get back into the swing of things. So, Robot Girl you asked what kind of seizures I have. Partial incomplete mostly, but sometimes they involve both hemispheres of my brain. The seizures involve my vision. I cannot focus, vision becomes becomes blurry items giggles back and forth very fast. Some times ever thing I see moves far away and gets small. I become confused and have to try very hard to concentrate so no one knows I am having a seizure. My hearing causes me to hear words and sounds garbled and I want to talk and I can think of the word but I can't talk, the words won't come out of my mouth. My meds are;Lamotrigine {Lamictal} 200 mg 1 and 1/2 twice a day. LlEVETIRACETAM {KEPRA} 500 mg 3, twice a day and Zonisamide 100 mg 3, twice a day. I also take 1mg of Lorazapam if I have had to many seizures in a row and use the magnet. Last week one evening after I went to bed I hollered for my wife to bring me a Lorazapam. When she got to the bedroom I was having a jerking, ridged muscle seizure. She had never seen me have such a bad seizure before. She told me my seizure scared her and she really wanted to call 911. We have an agreement    no 911 calls for me. I was not aware of my seizure and still have no memory of that seizure. I usually go 2 or 3 or even 4 days with out a seizure. Most of September I have had 1 or 2 seizures every day and some of those seizures were at the worst possible times you can think of. Something has truly changed. Four months ago I started a new med, Propranolol for the lights I see related to pain free migraine head aches. The lights are gone, I'm happy about that, and the seizures are not related to the med, so I wonder what's up. Oh God I hope it's not the vns. With no health insurance I have no where to turn--- except in circles. Ha ha ha!!!!!!! Some times you have to laugh or else IT wins and you loose. Well, that's all I can think of. Be good to yourselves. Suspender