Guest guest Posted July 13, 2002 Report Share Posted July 13, 2002 Geez O'Pete, fella...... we also know the status story only far too well...... Charlie was placed in a barbituate coma for over a week to stop his.... what a nightmare. This is tricky stuff and no doubt someone else on this list may have helpful insights for me. Do not apologize for sharing, that's what we are all here for, to help each other and maybe even make friends and learn something along the way. mjh In a message dated 7/13/02 4:54:32 PM Eastern Daylight Time, mackenzemcaleer@... writes: > Hello all, > > I started having seizures when I was 22. There are no hereditary factors, > I've never had any head injuries, I've never had meningitis or anything > like that, I've never done any drugs, I've never been a heavy drinker, I > exercise very regularly and there's nothing else that the doctors can think > of that might have caused this. I had just gotten out of the marine corps > and was in the best shape of my life. I'm now 24, almost 25 and have been > living with them as best as I can. Until last month... > > I used to have a grand mal seizure every couple of months or when I > missed or was late with my medication. Last month, I went to my father's > house in New York for vacation. I had taken my medication on time, was well > rested and the flight was only four hours. I'd only been there a couple > hours and was relaxing on the couch when I went into status epilepticus. I > was unconcious for four days, woke up for two and was then unconcious for > another two. They did MRIs (with and without dye), EKGs, a spinal tap and > had an EEG cap on my head for three days. Nothing came back that nailed > anything down or was useful to the doctors. I spent 10 days in hospitals > total, had 18 - 20 grand mal seizures and got transferred twice to > different hospital's ICUs. None of the 6 or 7 neurologists and > epileptologists that looked at me could figure out what happened or why > they couldn't bring me back around. The only thing the doctors did was to > add Depakote to my medication which is now Keppra, 1000mg 2x day, Depakote, > 500mg 2x day and Lamictal 100mg 2x day. At the end of the trip, all I had > to show for it was a ton of new test films, even more questions and a > burning determination to figure out what's going on and how to beat it. > > I came home to my neurologist and gave him the films, he found nothing > wrong. He sent me for another sleep deprived EEG and saw " some > irregularities " , so he ordered an ambulatory EEG. The original order was > for 48 hours with these probes glued to my head and this gauze hat while I > live my life. They told me to do everything I could to have a seizure while > I had this on. So, I stopped taking my medication, started staying up until > 2 and 3 am, played video games for hours, even drank a few beers and ran > around to get sweaty and worked up. None of it worked. When I returned to > the office to get this all taken off on Friday, I hadn't had a seizure. > They called the doctor and he told me to keep it on over the weekend and to > keep trying to have a seizure. When he called me that day, I told him > everything I'd done to try and have a seizure. He told me that I should go > back on the keppra and lamictal because he was afraid that I'd go back into > status epilepticus. At that point, I got pretty peived. I asked him how > that made any damned sense. I went into Status in New York doing everything > right and had even gotten extra sleep because I knew that I'd be traveling. > I took a trip several months earlier to Reno, NV from my home in Atlanta > and hadn't had any problems. So, I can't imagine that it had anything to do > with the travel. He told me that I should go back on the two medications > and take this rig off on Monday morning at the office. By that time, I'll > have had this on for 96 hours and for whatever reason, I have a feeling > that I won't have had a seizure by then either. > > I have been to a total of more than 20 epileptologists and neurologists, > a cardiologist (who after testing me told me that my heart rate got into > the high twenties, low thirties when I slept but that it was strong as an > ox's and that I may have breathing problems or...), a ear, nose and throat > guy (because when I started having seizures, they were only in my sleep and > they thought I might have sleep apnea...I didn't...and to follow up on the > cardiologist's questions...nothing) and have talked to a ton of people who > have or have had seizures and have joined all of these groups.....all with > ZERO answers or major improvement. Though, y'all are a big help. > > On one hand, I'm bitching...but on the other, if anyone would have any real > answers, y'all would. Any ideas? > > Thanks for listening to my sad story and not rolling your eyes, :-) > > Mackenze > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2002 Report Share Posted July 13, 2002 I have been a sleeper to this list since I signed up a while back. I have just read a lot and learned while I had time. My life with Epilepsy started when I was 9. I am 32 now. I have Grand Mal at night while sleeping only when my meds fail me. I have noticed that I have them in the middle of sleep walking. The reason I am writing this is because I am convinced that my seizures are brought on due to some unresolved trauma that somehow my brain does not want to deal with. Does this sound stupid? It's kinda like in my dream state I have this boundary that cannot be passed into without having a seizure. My meds do not allow my brain chemistry to go to this point. Kinda weird, I know. This is my own reasoning, the doctors don't know. Thanks for listening. Steve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2002 Report Share Posted July 13, 2002 Steve Have you thought about adjusting the TIME you take your meds? If your nocturnal seizures happen at about the same time, look into this. Once we adjusted my son's meds timing, his night seizures stopped. Look into the s-Reiter.com site. Yes, you can have some dream/sleep phase stuff happening that can trigger those events for you...... no so dumb and sure worth exploring. mjh In a message dated 7/13/02 7:39:15 PM Eastern Daylight Time, akitahazen@... writes: > I have been a sleeper to this list since I signed up a while back. I have > just read a lot and learned while I had time. My life with Epilepsy started > when I was 9. I am 32 now. I have Grand Mal at night while sleeping only > when > my meds fail me. I have noticed that I have them in the middle of sleep > walking. The reason I am writing this is because I am convinced that my > seizures are brought on due to some unresolved trauma that somehow my brain > does not want to deal with. Does this sound stupid? It's kinda like in my > dream state I have this boundary that cannot be passed into without having > a > seizure. My meds do not allow my brain chemistry to go to this point. Kinda > weird, I know. This is my own reasoning, the doctors don't know. Thanks for > listening. > > Steve > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2002 Report Share Posted July 13, 2002 My goal is to be med free. I have now adjusted my new medicine(Topamax) and I have not had any seizures problems in months. I went through problems when after 19 yrs of being on Dilantin it decided to stop working. That was a very trying time. I thank God for my wife everyday! Thanks for website I'll get busy. Steve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2002 Report Share Posted July 13, 2002 Steve It's always difficult when a drug quits working, glad to hear the Topamax is helpful to you as is your spouse. mjh In a message dated 7/13/02 8:39:10 PM Eastern Daylight Time, akitahazen@... writes: > My goal is to be med free. I have now adjusted my new medicine(Topamax) and > I > have not had any seizures problems in months. I went through problems when > after 19 yrs of being on Dilantin it decided to stop working. That was a > very > trying time. I thank God for my wife everyday! Thanks for website I'll get > busy. > > Steve > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2002 Report Share Posted July 13, 2002 Steve that's my son's goal, too..... to be seizure free and meds free......... to that end we are investigating neurogeedback. check out www.add-biofeedback.com mjh In a message dated 7/13/02 8:39:10 PM Eastern Daylight Time, akitahazen@... writes: > My goal is to be med free. I have now adjusted my new medicine(Topamax) and > I > have not had any seizures problems in months. I went through problems when > after 19 yrs of being on Dilantin it decided to stop working. That was a > very > trying time. I thank God for my wife everyday! Thanks for website I'll get > busy. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2002 Report Share Posted July 13, 2002 MacKenze, You are having a rough time of it! A very good place to start lookinf for some answers and solid advice is the s\Reiter Epilepsy Research Program in Santa , CA. They run the only epilepsy clinic in the US that takes the approach of teaching you ways to manage your seizures. Lamar, who is in this group went there. I hope he will write you when he sees your message. This is the link to the clinic web page: http://www.andrewsreiter.com/ You can contact Dr. Donna s from there. Keep writing and spouting off, asking lots of questions, whatever. It will help you to find your own answers for the seizures. Zoe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2002 Report Share Posted July 14, 2002 Steve, Take a look at s-Reiter . You can even get feedback from the doctor by sending email. This may prove helpful to you. Check it out. Lamar akitahazen@... wrote: > I have been a sleeper to this list since I signed up a while back. I > have > just read a lot and learned while I had time. My life with Epilepsy > started > when I was 9. I am 32 now. I have Grand Mal at night while sleeping > only when > my meds fail me. I have noticed that I have them in the middle of > sleep > walking. The reason I am writing this is because I am convinced that > my > seizures are brought on due to some unresolved trauma that somehow my > brain > does not want to deal with. Does this sound stupid? It's kinda like in > my > dream state I have this boundary that cannot be passed into without > having a > seizure. My meds do not allow my brain chemistry to go to this point. > Kinda > weird, I know. This is my own reasoning, the doctors don't know. > Thanks for > listening. > > Steve > > > Quote Link to comment Share on other sites More sharing options...
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