Guest guest Posted May 29, 2002 Report Share Posted May 29, 2002 Ginny, Welcome to the group. My name is Lamar. I have been diagnosed with epilepsy for 35 years. I am 51 years old now. Last year I was able to get off drugs thanks to the help of a clinic listed in our Bookmarks section - s-Reiter . I am now currently drug-free after 34 years on such drugs as Dilantin, Phenobarbital, Tegretol and Lamictal. No, I wasn't all those drugs at the same time. But, just being on them period proved to have adverse side effects. Because those adverse side effects had nothing to do with my actual seizure disorder - I went years without realizing the damage I was doing to myself by taking the medications. My memory recall was affected. My reaction time slowed down. My facial countenace was even altered. I am not advocating that all people taking drugs for seizure control stop. Instead, I am encouraging all those who have epilepsy seek to understand their condition as best they can. Every situation is unique and should be treated as such. If you do not understand why you are epileptic and what it is that triggers your seizure disorder, you need to find out. Successfully addressing the reason for being epileptic and what it is that triggers your seizures might possibly transform your life for the better. That's what happened to me, anyway. Therefore, I am a big advocate of seeking second opinions. You can do that quite effectively by utilizing our Bookmark section and asking questions of the professionals online via email. Good luck. Lamar > > princessginny79 <Poohfrk79@...> wrote: Hello everyone! I wanted > to take a minute to introduce myself and > share my story. My name is Ginny and I'm 23 years old. Last August > I moved out of my parents' house for the first time, from Phoenix all > the way to Las Vegas, to become a first grade teacher at an inner > city school. After I moved I started to notice I was having some > wierd episodes, things looking and sounding wierd for brief periods > of time etc. I had noticed it some before I moved but I didn't > really think too much of it. They occured more and more often, until > finally my boyfriend convinced me that I had to tell a doctor. I was > finally referred to a neurologist and diagnosed with having complex > partial seizures. It's been an incredibly scary thing, especially > since I'm so far from my family and most of my friends. Add the > stress of a new, very demanding career and it's become almost > overwhelming. I had an EEG that came back normal and was put on > tegretol. So far, the tegretol has been working and I have not had a > seizure since. However, I'm exhausted almost constantly which maks > it very difficult to keep up with my class of first graders. Last > week I had an MRI and I'm still waiting for the results. All of it > is confusing, frightening and overwhelming, but I finally am feeling > like it's under control. Anyway, I just wanted to share because not > many people that I've talked to have really understood what I'm going > through. I can tell by reading past posts that you all are very > knowledgeable and it's nice to know that there are people here who > can help with my questions! > > Ginny > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2002 Report Share Posted May 30, 2002 How were you able to stop your seizures Debbie [ ] Welcome Ginny Ginny, Welcome to the group. My name is Lamar. I have been diagnosed with epilepsy for 35 years. I am 51 years old now. Last year I was able to get off drugs thanks to the help of a clinic listed in our Bookmarks section - s-Reiter . I am now currently drug-free after 34 years on such drugs as Dilantin, Phenobarbital, Tegretol and Lamictal. No, I wasn't all those drugs at the same time. But, just being on them period proved to have adverse side effects. Because those adverse side effects had nothing to do with my actual seizure disorder - I went years without realizing the damage I was doing to myself by taking the medications. My memory recall was affected. My reaction time slowed down. My facial countenace was even altered. I am not advocating that all people taking drugs for seizure control stop. Instead, I am encouraging all those who have epilepsy seek to understand their condition as best they can. Every situation is unique and should be treated as such. If you do not understand why you are epileptic and what it is that triggers your seizure disorder, you need to find out. Successfully addressing the reason for being epileptic and what it is that triggers your seizures might possibly transform your life for the better. That's what happened to me, anyway. Therefore, I am a big advocate of seeking second opinions. You can do that quite effectively by utilizing our Bookmark section and asking questions of the professionals online via email. Good luck. Lamar > > princessginny79 <Poohfrk79@...> wrote: Hello everyone! I wanted > to take a minute to introduce myself and > share my story. My name is Ginny and I'm 23 years old. Last August > I moved out of my parents' house for the first time, from Phoenix all > the way to Las Vegas, to become a first grade teacher at an inner > city school. After I moved I started to notice I was having some > wierd episodes, things looking and sounding wierd for brief periods > of time etc. I had noticed it some before I moved but I didn't > really think too much of it. They occured more and more often, until > finally my boyfriend convinced me that I had to tell a doctor. I was > finally referred to a neurologist and diagnosed with having complex > partial seizures. It's been an incredibly scary thing, especially > since I'm so far from my family and most of my friends. Add the > stress of a new, very demanding career and it's become almost > overwhelming. I had an EEG that came back normal and was put on > tegretol. So far, the tegretol has been working and I have not had a > seizure since. However, I'm exhausted almost constantly which maks > it very difficult to keep up with my class of first graders. Last > week I had an MRI and I'm still waiting for the results. All of it > is confusing, frightening and overwhelming, but I finally am feeling > like it's under control. Anyway, I just wanted to share because not > many people that I've talked to have really understood what I'm going > through. I can tell by reading past posts that you all are very > knowledgeable and it's nice to know that there are people here who > can help with my questions! > > Ginny > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2002 Report Share Posted May 30, 2002 Debbie, In my particular case, I was not having a lot of seizures. Even when I was under medication, I rarely had a seizure. However, going off a medication can itself cause a seizure to occur. This actually happened to me when I went a few days without renewing my prescription (at the time it was for Tegretol). I had a seizure at my place of employment. I simply went unconscious while at a computer screen. When I awoke I was in an ambulance on the way to the hospital. During the last five years of my life, I began to question the effects of medication for the control of my seizure disorder like never before. My neurologist even had me have my memory tested four different times during that time period. Although we tested my memory numerous times - and found there to be problems - we never did anything to fix them. Why? Because I could not afford to pursue the two solutions I was given. The first solution was to try " smart drugs. " The problem here was that there could be an adverse reaction between my anti-convulsant medication(Lamictal) for the control of gran mal seizures and the smart drug. I could actually end up having seizures from taking smart drugs. I didn't want to take that chance. I didn't want to be a guinea pig for my doctor's diagnosis. I just said " no to smart drugs. " The second solution was to enter into pyschotherapy. I was more than willing to pursue this option. There was just one problem - my employer's group insurance policy would not cover it. Without the benefit of the insurance coverage, I could not afford to pursue the treatment. Where could I go and get help? Well, I ended up going to the Internet and various groups like this one. I ended up being told by someone in Germany via email to check out a website called s-Reiter . I sent them my medical records and MRI's. Bottom line, I got a very personal education into my own seizure disorder. Like so many things in life, the inability to solve problems lies in an inability to understand what is really wrong. Everyone who has a gran mal seizure does not have it for the same reason. In fact, no two people may have a seizure for the exact same reason. So, why should the solution be exactly the same for everyone? In my particular case, I went for most of my life without even trying to " connect the dots " between having a poor memory, bad acne condition, blurry vision at times and the taking of anti-convulsant medication. But, there was a connection. s-Reiter brought the connection to my attention. They did this by taking a look at the " big picture " of my life - not just the fact that I was a person with a history of gran mal seizures beginning with a football scrimmage in high school. s-Reiter taught me a breathing technique to cause sparkling visuals auras to disappear and not leave me with a splitting headache. I developed some healthy habits also which have lessened the possibility of my having seizures. I am currently drug-free after 34 years on medication. Since becoming drug-free more than a year ago, I have only had two seizures. Both of those seizure I contribute to getting inadequate sleep at night rather than being off medication. What s-Reiter can do for you - or anyone else for that matter - depends upon what's wrong. Their treatment is personalized. It's based on the needs of the individual. If you do not know why you are epileptic and what it is that triggers your seizures, is it not time you learned? Learning the source of the problem is an important first step to solving the problem. Does that not make sense? In my opinion, s-Reiter exists to help people solve their epilepsy problems - not simply cover them up. Their clinic specializes in treating nothing but epilepsy. They also do ongoing research on the disorder. Their book, Epilepsy: A New Approach, is a best-seller. You can read reviews of the book by going to Amazon.com. But, unlike some book which make it onto the Amazon.com best-seller list, this book should also be available in your local public library. If you go to their website, you will read that something like 80% or more of their patients learn to control their seizure disorders with little or no medication. Nevertheless, the goal here is not simply to bring seizures under contol. It's bigger than that. The goal is to improve an epileptic's overall quality of life. Although s-Reiter's success rate is an amazing statistic, five years ago I would not have believed it. Back then no one could convince me a drug-free lifestyle would have been possible for somone like me (34 years on prescription medication). But today, I am a living testimony of this clinic's success. I have also had the privilege of meeting other epileptics who are living drug-free lives thanks to the work of s-Rieter. If this sounds like the kind of help you need, there is a easy way to find out. Simply visit the s-Reiter website and leave some email questions. Good luck. Lamar Rob and Deb Michalski wrote: > How were you able to stop your seizures > > > Debbie > > [ ] Welcome Ginny > > Ginny, > > Welcome to the group. My name is Lamar. I have been diagnosed with > epilepsy for 35 years. I am 51 years old now. Last year I was able > to > get off drugs thanks to the help of a clinic listed in our Bookmarks > section - s-Reiter . I am now currently drug-free after 34 > years on such drugs as Dilantin, Phenobarbital, Tegretol and Lamictal. > > No, I wasn't all those drugs at the same time. But, just being on > them > period proved to have adverse side effects. Because those adverse > side > effects had nothing to do with my actual seizure disorder - I went > years > without realizing the damage I was doing to myself by taking the > medications. My memory recall was affected. My reaction time slowed > down. My facial countenace was even altered. > > I am not advocating that all people taking drugs for seizure control > stop. Instead, I am encouraging all those who have epilepsy seek to > understand their condition as best they can. Every situation is > unique > and should be treated as such. If you do not understand why you are > epileptic and what it is that triggers your seizure disorder, you need > > to find out. Successfully addressing the reason for being epileptic > and > what it is that triggers your seizures might possibly transform your > life for the better. That's what happened to me, anyway. Therefore, > I > am a big advocate of seeking second opinions. You can do that quite > effectively by utilizing our Bookmark section and asking questions of > the professionals online via email. > > Good luck. > > Lamar Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.