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Medical Forum / Diseases and Disorders / Epilepsy / June 2004Some Questins about Epilepsy
Hi, I have a few quick questions I'd like to ask. If you guys have the answer that would be great. I am currently taking 400 MG of Dilantin and 50 MG of Topomax. My epilepsy is centered toward the left temporal lobe. When it is not controlled I have black outs etc. Even with the medication I still have the occasional seconds where I won't understand what other people are saying and I won't be able to get words out of my mouth. A few days ago I watched Dodgeball but then I almost went into the seizure because of the film. Ever since leaving the theater i've been getting really bad headaches :( Does anybody here have issue with watching films? Anyways I spoke with my doctor and he said it wasn't good that I was having "break-through" seizures and said I may need to get surgeory. This is soomething I do not want to do especially since it they would be removing chunks of my left temporal lobe. Anybody here have any similar problems with LTE and watching films? Or do you have medication that stopped ALLLLLLLLLLLLLLL seizures from happening? IS IT POSSIBLE TO STOP ALL SEIZURES TO STOP HAPPENING? Thank you for your time! > Hi, > I have a few quick questions I'd like to ask. If you guys have the [quoted text clipped - 3 lines] > epilepsy is centered toward the left temporal lobe. When it is not > controlled I have black outs etc. *** Mine is on Right T.Lobe, and I was only able to use Dilantin for about 6 months. It's an old medication (1930s) that is usually used first as it is longer studied and, for those who can use it, has less side effects and is Cheaper as the research costs have long ago been recovered. I haven't used Topomax, but others 'around here' have. There are *lots of other medications for TLE (Tegretol, Frisium are what I use, but others here are using different ones), **long before Surgery comes up. > Even with the medication I still have the occasional seconds where I > won't understand what other people are saying and I won't be able to > get words out of my mouth. *** Those 'seconds' above are listed on websites under Absences or Simple Partial seizures, where we don't pass out, but 'drift away' briefly. Those are *Minor seizures, compared to stronger ones, and Still not reason enough to go into surgery over. > A few days ago I watched Dodgeball but then I almost went into the > seizure because of the film. Ever since leaving the theater i've been > getting really bad headaches :( > > Does anybody here have issue with watching films? ** I haven't, others might comment later. Was there any Strobing or other light effects in the film that you can recall? Sometimes flashing lights or strobes can effect some of us when we're sensitive. I had a brief period (less than ~4 weeks), where I had extreme headaches as we adjusted a medication I was using. That was about 1995/6 and passed after a period. I found mine happened related to Air Pressure changes at that time (rain storms moving in), and stopped 'for no good reason' that I can recall after that period. > Anyways I spoke with my doctor and he said it wasn't good that I was > having "break-through" seizures and said I may need to get surgeory. > This is soomething I do not want to do especially since it they would > be removing chunks of my left temporal lobe. *** A breakthrough seizure (first time I heard a doctor use a word *I used to use ! ), can either mean that the medication level has dropped below where it's giving control OR there's something around you that might be different and causing the loss of control. Can you recall anything different when those happened ? or anything that might have interfered with Blood Levels of the Pills (Alcohol, upset stomach remedies, some other over-the-counter cold pills can disrupt blood levels). The fact that you have one or two seizures is still (in my opinion) not a reason to consider Surgery unless they have some pretty good reasons. The Temporal Lobes are also not at a location that's that Handy if Surgery were considered. (They're above the mouth, behind the Cheeks, not near the outside of the scalp, for example.) > Anybody here have any similar problems with LTE and watching films? Or > do you have medication that stopped ALLLLLLLLLLLLLLL seizures from > happening? > > IS IT POSSIBLE TO STOP ALL SEIZURES TO STOP HAPPENING? > Thank you for your time! I've used Tegretol Controlled Release for Temporal Lobe Seizures (right side) from about 1994 to now, and at lower dose but with Frisium (Clobazam) added about 1995/6. Last 2 seizures I had were Dec. 97 and June 98. (That only matters since I was told in 1993 that I might 'Hope for' a target of 2-3 seizures per month.) Don't give up hope. There are lots of other pills for that type of seizure, and lots of us 'around here' that are taking various combinations of pills to control our types of seizures. If you can't find much information on an searches for Temporal Lobe Epilepsy, try search also Complex Partial Seizures (newer term that includes the older TLE types within the symptoms), and Simple Partial Seizures (the auras you described above might be some of what you're not getting). IF you're getting mostly Simple Partial types, those are near full control, and Not a reason to move into surgery. A Non-medical opinion. Welcome to our Neighbourhood, by the way. It will get busier once the weekend is over, so keep reading for other ideas and posts. (I posted a link to Idaho Website about 2 days? ago, that was about First Aid for Seizures. If you still have that message up, look at that site, bookmark it, then look around the rest of the site. Most of the questions or fears you might have wrt. information on seizures are Already Answered for you within that site.) G./ Correction of a typo (one of them) from earlier post (3rd last line at ***s here. ) --> > > Anyways I spoke with my doctor and he said it wasn't good that I was > > having "break-through" seizures and said I may need to get surgeory. [quoted text clipped - 34 lines] > within the symptoms), and Simple Partial Seizures (the auras you described > above might be some of what you're ***NOW*** (I earlier typed 'not' !!) getting). IF you're getting mostly > Simple Partial types, those are near full control, and Not a reason to move > into surgery. A Non-medical opinion. G./ Here's an Earlier Post I did that lists about 5 Ep. sites that you might not have seen in the History file. I think this is one without some of my 'Calssic' Typos !! :-< G. ********** There are a number of sites around the group that get posted from time to time. Some of the symptoms (at bottom) that you might see, might be displayed on one of the First Aid for Seizures Websites below -- likely to first 'seizure' one. If you look down the first aid chart, I think it shows 3 or 4 main types of seizures down one column, then the types of things that can be done. Under the Symptoms or Sensations columns are the types of 'aura' or sensation that might be specific to a particular seizure type. That is usually used by a Doctor at first to identify possible location where the seizure is Launching From. Then further tests (EEG, MRI, CT) might look at more detailed internals. For *your use, all you likely need is the chart, and the Symptoms with the First Aid for whichever type most closely matches what he has. NOTE - within Julie's Idaho Main website, and on Howdy Dave's there are links to the Ep. Foundation of America that has a Medications Glossary and more detail on specific seizure types that you can search out at your own pace. I also included the one entrance at bottom below. Also some of the minor seizures that don't result in loss of consciousness, might be grouped under either 'absences' (if a person appears to 'zone out' for short periods), or simple partials (that might just include an Aura then a return to normal. *If someone has been having these for a long time, these *might seem like the New Normal for them so they may not be Aware that those are an Aura. OR they might prefer to 'not see them' for what they are. // Each of the sites can be put on a Bookmark or Favourite so that you can then refer back to see if there are updates without needing to remember the www address each time. hth. G.R. ********** For anyone who hasn't seen these already --> The General Site that Julie operates for Epilepsy Idaho group is at: http://www.epilepsyidaho.org . The 'First Aid chart' I frequently refer to can be located by entering and wandering about site above, but can be reached direct at http://www.epilepsyidaho.org/seizure.htm . There's a Second topic added, that goes more into First Aid in Water, on Aircraft, etc. It's at http://www.epilepsyidaho.org/seizure2.htm . Also accessible from top site, but more detail on Learning about Epilepsy can be found at http://www.epilepsyidaho/learn.htm . That one has quite a few more links, information on kids newly diagnosed? (I think) and general questions that others might ask, or those newly diagnosed. If there's no link there to a Medications Glossary, the Ep. Foundation of America has one (of several) within http://efa.org . G./ Thanks for the reply! I am just frustrated and paranoid - but I am definately not losing hope. I think the biggest problem with epilepsy right now is I may be offered a promotion in my company but it deals with a lot of traveling and wheeling and dealing in a high-stress environment - I had to turn it down in fear of having a seizure in the middle of a meeting with some clients I don't even know etc.! Eventually we can all control this thing and win. Btw i am reading this book called Epilepsy: A New Approach by Adrienne Richard and Joel Reiter MD - Its very informative!! Thanks all > Thanks for the reply! > [quoted text clipped - 10 lines] > > Thanks all Hi [insert name here], Don't EVER be afraid of having a seizure in front of other people. If you allow epilepsy to prevent you from being in front of others, you're letting it rule your life. Someone else said on here "You have epilepsy, it doesn't have you". I used to be the production manager of a factory, managing a staff of over 20 and dealing every day face to face with clients - some who I knew and some whose business I was trying to procure. I did this despite the fact that I was having up to 15 seizures every day, during which I would spin in circles and scream and laugh hysterically and clench my fists and try very hard not to punch the person I was with. They got used to it, or got over it. Either way, in the three years I was doing that, I never once had a complaint or lost a client because of it. They would be startled the first time they saw it, but once I explained what was going on, they understood and just accepted that it was a part of who I am. The reason I'm telling you this is that I don't think you should let your seizures dictate what position you hold within your company. While it's right to avoid high stress situations, if stress is a trigger for you, the fact that you are dealing with clients who don't know about your seizures should not be a factor. They are just people like you and I. Maybe you could even make them aware of the possibility of a seizure, when you first meet them. I've done this on a lot of occasions - usually when I do that, nothing happens. It helps you to feel more relaxed where you are if they know theres a possibility you'll have a seizure and since you are more relaxed, theres less chance of a seizure. Well thats what I found anyway. If you can handle the stress okay and it isn't a trigger for your seizures, I believe you should take that promotion. On the other hand, if it is a trigger, I think you are right to avoid it. As for avoiding being around people......I did that for a long time. I became a recluse and it took a lot of willpower to overcome it and get on with living. Living is much more fun. All the best to you. Darryl. > Hi, > [quoted text clipped - 25 lines] > > IS IT POSSIBLE TO STOP ALL SEIZURES TO STOP HAPPENING? Depends on the person and other things, but yes, it is possible. Or it is possible to go for such extremely long times between seizures so that they don't affect your life very much. Don't know about the movies as I haven't been to one in years. Barb > Thank you for your time! |
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