 |
 | Home | Contact Us | FAQ | Search & Site Map | Link to Us |
 | Sign In | Join | Other 45 Sites in Network |
Medical Forum / Diseases and Disorders / Epilepsy / May 2004am I really not alone?
Please I could use feed back, I feel that I am alone there are no support groups where I am living. I am 34 now, it all started in 1987..when I was 17, I'm sure we all remember our first one, or at least part of it. PLEASE TALK TO ME..NO ONE UNDERSTANDS......YOU DO THOUGH. PLEASE............................ G-MAL > Please I could use feed back, I feel that I am alone there are no support groups > where I am living. [quoted text clipped - 4 lines] > > G-MAL What would you like to talk about? We DO understand ... Mary > Please I could use feed back, I feel that I am alone there are no support groups > where I am living. [quoted text clipped - 4 lines] > > G-MAL Hi Welcome to the group. I see from your other posts that you take dilantin & tegretol and it sounds like you have grand mal tonic-clonic seizures. Are the drugs controling your seizures at all? How often do you have seizures and do you have any others such as complex partials? Bob > > Please I could use feed back, I feel that I am alone there are no support groups > > where I am living. [quoted text clipped - 15 lines] > > Bob Hi All my "fits" are severe, they are many...from "petit" to"Grand mal". it feels that my pills are only working about 50% of the time. The surgery is not an option...ever. I'm sorry I have so much to say, I'm trying to fight it...I can feel it ...need to lay down...before I falll down. srry I just want to have one ,need to release gmal > > > Please I could use feed back, I feel that I am alone there are no support groups > > > where I am living. [quoted text clipped - 26 lines] > I just want to have one ,need to release > gmal Tried to write you earlier but it wouldn't send. Don't worry about complaining here, making comments, asking for opinions or anything else. That's what we're here for. For some of us, this is the only place we can vent. No support groups around here either, argghh. Barb > No support groups around here either, argghh. Why not start one? Mary > Barb >> No support groups around here either, argghh. > > Why not start one? No thanks. Me family has been involved for a lot of years in community stuff. Now that me and my hubby are getting older, it's time for the healthier and younger people to start doing some of this stuff. Barb > Mary > >>Barb > >> No support groups around here either, argghh. > > [quoted text clipped - 3 lines] > stuff. Now that me and my hubby are getting older, it's time for the > healthier and younger people to start doing some of this stuff. We're in the same situation - but I don't care that there isn't a support group around :-) Mary > Barb > > > Mary > > > >>Barb > > >> No support groups around here either, argghh. > > > [quoted text clipped - 16 lines] > > > > > >we all have been trying to live with this sh.t, but alone or not....sometimes it's nice to talk to someone that understands what your living through....rather than having some person just standing[or sitting]there nodding his,or her head in agreement of what you are trying to saying....but not understanding......it's like talking to a wall. oh about last night....I'm glad that I didn't have a "FULL BODY WORK OUT", and yet I'm srry that I didn't...because after the pain, and mem loss....I could feel "Normal"......for at least a little while. THANK YOU FOR THIS OUTLET......FOR "UNDERSTANDING" G-MAL "g-mal" <raymondjames@shaw.ca> wrote in message > > > > > > > >we all have been trying to live with this sh.t, but alone or not....sometimes it's nice to talk to someone that understands what your living through....rather than having some person just standing[or sitting]there nodding his,or her head in agreement of what you are trying to saying....but not understanding......it's like talking to a wall. All that nodding and 'umming' can be very frustrating. Let's face it, NOBODY knows exactly what you're feeling, not even the folk on this ng. But we come nearer to it than most. > THANK YOU FOR THIS OUTLET......FOR "UNDERSTANDING" > G-MAL Keep posting. Mary >>>>>No support groups around here either, argghh. >>>> [quoted text clipped - 20 lines] > OUT", and yet I'm srry that I didn't...because after the pain, and mem > loss....I could feel "Normal"......for at least a little while. When I felt crappy and knew a seizure was coming but the question was when, sometimes I would sit and play computer cards to force a seizure just to the get darned thing over with. Felt better for a short while afterwards, but then it would start up all over again. Barb > THANK YOU FOR THIS OUTLET......FOR "UNDERSTANDING" > G-MAL > When I felt crappy and knew a seizure was coming but the question was > when, sometimes I would sit and play computer cards to force a seizure > just to the get darned thing over with. Felt better for a short while > afterwards, but then it would start up all over again. > > Barb That's a novel approach - I can see the sense in it but never herd anyone suggest it before. Mary >>When I felt crappy and knew a seizure was coming but the question was >>when, sometimes I would sit and play computer cards to force a seizure [quoted text clipped - 7 lines] > > Mary Ever had the stomach flu? It's kind of the same thing. After you throw up, you feel better for a short time (until you start getting nauseated again). I think the reason it works for me is because of the photosensitivity thing; my brain is real touchy about visual triggers. I don't know if it would work on this LCD monitor either. I always did it on a regular monitor. Barb > >>Barb > > > > That's a novel approach - I can see the sense in it but never heard anyone > > suggest it before. > > > > Mary > > > Ever had the stomach flu? No ... I'm a very healthy person and only hve good dramatic things which will make visitors bring chocolates, champagne and sympathy. Not-one does that for mundane conditions :-) Trouble is that when I DO have cancer or whtever people comment on the lengths I'll go to to get attention :-) > I think the reason it works for me is because of the photosensitivity > thing; my brain is real touchy about visual triggers. I don't know if > it would work on this LCD monitor either. I always did it on a regular > monitor. It's still a new idea to me, thanks for telling us. Mary > Barb ??????????? > > >> No support groups around here either, argghh. > > > Why not start one? > > > > No thanks. Me family has been involved for a lot of years in community > > stuff. Now that me and my hubby are getting older, it's time for the > > healthier and younger people to start doing some of this stuff. OK. Let me see if I understand this: You claim to be alone, but you have a "hubby", community, and family. "No support groups around here either, argghh." Where are they? Somewhere else? You can get this one but not others? That's pretty strange. You don't know Chompy, do you? You also claim to remember your seizures. If you do, they aren't "grand mal". You so full of doo doo your eyes are brown. You did get I presume you wanted: people who have seizures to respond to you. Figure that out. Couldn't you pretend you had polio or something and leave us alone? Thanks. <<?>> > ??????????? > [quoted text clipped - 26 lines] > > <<?>> no it isn't strange, the nearest support grp is in vancouver, and I don't live walking distance...and it's not like that "the powers that be", will let me drive. they are g-mal , and I know that I have had a seizure whaen after the foggyness wears off, and the unending headache is unyeilding, oh ya I feel like sleeping for 16hrs[always with that damn headache] my first one happend one the job site[with dozens of wittness]needless to say that job did not last long. Also I am not a woman,and do not have a "hubby", but I know what your talking about. It was my first resonse in this grp...I f.cked up o.k..my resonse's to that lady's questions were not posted just my name. BUT YOU DO HAVE SOMETHING RIGHT...I DO HAVE BROWN EYES...SO DID MY FATHER. G-MAL Newsgroups are a slice of society, and as such they have their fair share of snots and weiners. The good guys outweigh the bad here by quite a bit, and there is this absolutely wonderful doohicky called the killfile to weed out the yucks. I found this place seven years ago, and it almost kinda sorta saved my life. At least my sanity. Finding someone who knows exactly what your talking about is an incredible feeling. You keep coming back and sharing and helping. Please. > > ??????????? > > [quoted text clipped - 26 lines] > > > > <<?>> At the risk of upsetting the innocent I'm going to assume that the above was from Mark Stamey. If so it was not kind, it was unfeeling and erroneous to boot, you were responding to the wrong person. g-mal, don't let the above post upset you, it's someone who can't follow a thread and has problems of his own. > Also I am not a woman,and do not have a "hubby", but I know what your > talking about. It was my first resonse in this grp...I f.cked up > o.k..my resonse's to that lady's questions were not posted just my > name. As it happens I expected that you were a young woman, funny how we make assumptions :-) But the above poster was confusing you and Cyber cafe and should follow a thread better to ensure insults - no matter how bad and unjustified - are aimed at someone who can defend herself. > BUT YOU DO HAVE SOMETHING RIGHT...I DO HAVE BROWN EYES...SO DID MY > FATHER. I have a husband and two sons with brown eyes and lots of grandchildren similarly favoured :-) Mary > G-MAL > > markestamey@yahoo.com (Mark) wrote in message > news:<f70744c.0404271444.3b4ccd14@posting.google.com>... [quoted text clipped - 56 lines] > Mary > > G-MAL as you can see be this thread,I'm still getting the hang of it...srry for any confusion. I'm almostout of pills, I need to make an appointment for an other yr's worth of refill's...not to mention a blood test[my levels]again...my arm is so scar'd up it should belong to an I.V user. I swear my "doc" is part"vamp". G-mal > as you can see be this thread,I'm still getting the hang of it...srry > for any confusion. Don't worry, yours wasn't the confused post. > I'm almostout of pills, I need to make an > appointment for an other yr's worth of refill's...not to mention a > blood test[my levels]again...my arm is so scar'd up it should belong > to an I.V user. I swear my "doc" is part"vamp". :-) Can't you do the sort of blood tests my grandchildren do, in their fingers? I've not come across collecting blood from arms before. And you get a year's supply of pills at a time? Mary G-mal > Can't you do the sort of blood tests my grandchildren do, in their fingers? > I've not come across collecting blood from arms before. > > And you get a year's supply of pills at a time? > > Mary You've never had a blood test taken from your arm before? That is amazing. Every time my levels need checking or I need any other type of "blood work", the arm is where they go, and after awhile it shows... As far as I know taking from the finger is only for blood sugar levels. I sure wish they could do that for my tests! I guess medicine is more advanced in the UK? > > Can't you do the sort of blood tests my grandchildren do, in their > fingers? [quoted text clipped - 5 lines] > > You've never had a blood test taken from your arm before? That is amazing. Sorry, yes of course I have - but not in connection with epilepsy. I should have been more specific, sorry. > Every time my levels need checking or I need any other type of "blood work", > the arm is where they go, and after awhile it shows... As far as I know > taking from the finger is only for blood sugar levels. I sure wish they > could do that for my tests! I guess medicine is more advanced in the UK? It's certainly different in many cases but I don't know whether it's better or worse. It suits me - I'm still alive :-) Mary >>>markestamey@yahoo.com (Mark) wrote in message >> [quoted text clipped - 70 lines] > blood test[my levels]again...my arm is so scar'd up it should belong > to an I.V user. I swear my "doc" is part"vamp". G-mal Talking about scars, I get frequent blood levels because I take a blood thinner. This past year where they draw the blood began showing funny indentations and I asked the nurse if this is what drug addict needle tracks looked like, and she said, YES. So far, the needle marks are only on one arm. Are your veins getting to the point where the needle bounces off from all the scar tissue? Barb > > markestamey@yahoo.com (Mark) wrote in message > news:<f70744c.0404271444.3b4ccd14@posting.google.com>... [quoted text clipped - 56 lines] > Mary > > G-MAL I want to post a quote that I came across,..it sums it all up; "As long as our brain remains a mystery, the Universe, reflecting the structure of the brain, will also be a mystery." [I.Newton Kugelmass M.D,Ph.D,Sc.D] > I want to post a quote that I came across,..it sums it all up; "As > long as our brain remains a mystery, the Universe, reflecting the > structure of the brain, will also be a mystery." [I.Newton Kugelmass > M.D,Ph.D,Sc.D] Yes - and? We can't change that ... Mary >>??????????? >> [quoted text clipped - 9 lines] >> >>You claim to be alone, but you have a "hubby", community, and family. I'm totally lost in this thread. I don't know if the response was to my response or not. I kind of think at least part of it was. Yeah, I'm married and have grown children. We live on a farm in a rural area, and my husband drives a truck when he's not farming. So sometimes when he's on the road I don't see him for several days. Before my husband started driving, he was involved in a lot of stuff. He was chairman of our township for many years, on the fire department board, on the coop board at our dairy plant, and so on. One year, when our kids were little, I kept track of the meetings he had during one month. During that month, which was February, he was gone 20 evenings to attend meetings. He didn't get paid for any of this stuff either at the time. Myself, I was a trustee for our city libary board, and trustee for the milk plant coop. I've also worked outside the home and returned to school or took courses a few times for strange things like sign language because we had a client at work who communicated that way. By the way, me and a friend used to take this fellow with us to sign langauge. I also started and moderated an online support group for a few years (that was more recent though). You know, it's a lot of things like that that eat up time. Right now, I'm too shot physically to do most of that stuff. >>"No support groups around here either, argghh." >> >>Where are they? Somewhere else? You can get this one but not others? >>That's pretty strange. You don't know Chompy, do you? There is a regional epilepsy association that generally holds meetings in a town/city that is about 76 miles from here. I worked at a county sheltered workshop for people with developmental and emotional disabilities and many of those people had seizure disorders. Back then, our regional epilepsy group was not at all interested in the adult population. Everything was and still is focused on children. I know that some communities in the past have tried to run a volunteer meeting situation but most disbanded over time for reasons like lack of transportation (no public transportation available at all out here), inconvienient meeting times, and so on. >>You also claim to remember your seizures. If you do, they aren't >>"grand mal". No they aren't grand mal (yet). I have had simple partial seizures, which developed into complex partial seizures. I have altered consciousness, which is common with these types of seizures. Now, I wasn't being flippant about the "No, they aren't grand mal (yet)" because my first neurologist said there is a potential for that. >>You so full of doo doo your eyes are brown. >> >>You did get I presume you wanted: people who have seizures to respond >>to you. Figure that out. Couldn't you pretend you had polio or >>something and leave us alone? It sounds to me you believe the only people who have epilepsy are the ones who have grand mal seizures. Barb >>Thanks. >> [quoted text clipped - 15 lines] > FATHER. > G-MAL > ??????????? > [quoted text clipped - 26 lines] > > <<?>> This really doesn't sound as if it was written by Mark S. It's from a different account: Yahoo/Google than he normally posts from and he has never talked like that in the past. We have been having problems recently with some hackers who were forging (faking) addresses and making some pretty insulting posts here. It's possible that one of them made this post. The real Mark has a serious condition with frequent grand mals and, like I said, has never talked like this in the past. It may not have been him. Bob >>??????????? >> [quoted text clipped - 38 lines] > The real Mark has a serious condition with frequent grand mals and, like I > said, has never talked like this in the past. It may not have been him. Hasn't Mark been in the hospital anyway? Thought he was supposed to have testing. Barb > Bob > >>??????????? > >> [quoted text clipped - 41 lines] > Hasn't Mark been in the hospital anyway? Thought he was supposed to > have testing. GR is right and after looking at the address again earlier, I can see that Mark is still posting from the RoadRunner account. It must have been him making that post, but things must be happening to him for him to talk like that including picking up on some of those hackers' insulting terms Bob > > ??????????? > > > > >> No support groups around here either, argghh. [quoted text clipped - 35 lines] > said, has never talked like this in the past. It may not have been him. > Bob One set of posts (older ones) used nyc.rr.com, last Para. ones (above here) you asked about use Yahoo to access. They're **both same Dns number (66.65.35.etc.). May be reactions to altered Medication levels or level of szr. control? I'm not a Doctor. / G. > > ??????????? > > [quoted text clipped - 39 lines] > > Bob I didn't know that Bob, and I hope that the real "Mark" doesn't get angry with my response to that Posting. I wish mark the best, the last thing I want to do is make anyone mad,or uncomfortable in any way. G-mal....[Ray] "g-mal" <raymondjames@shaw.ca> wrote in message > > I didn't know that Bob, and I hope that the real "Mark" doesn't get > angry with my response to that Posting. I wish mark the best, the last > thing I want to do is make anyone mad,or uncomfortable in any way. > G-mal....[Ray] Nice to know your name, Ray :-) How about telling us something more about yourself? Mary > > > ??????????? > > > [quoted text clipped - 44 lines] > thing I want to do is make anyone mad,or uncomfortable in any way. > G-mal....[Ray] Hi Ray Although it's true that Mark has never posted like that in the past, I had taken another look at the message headers on that post (just like GR was talking about) and it probably came from Mark after all. I think he must be going through a very difficult period. His was a pretty insulting post, so I doubt that he would get angry at your response as he should understand that you had a good reason for your response. Maybe he'll explain after things (seizures? meds?) settle down for him. Bob I cannot believe that our Mark would post that or the other even nastier posts this person has made. I think a troll is using Mark's name in his header to cause trouble. > Hi Ray > [quoted text clipped - 6 lines] > > Bob > I cannot believe that our Mark would post that or the other even nastier > posts this person has made. I think a troll is using Mark's name in his > header to cause trouble. There was a group of hackers who were cross-posting their garbage to 4 newsgroups including a.s.e. I reported them to the ISP's several times, but they did their mischief while they were here and probably got everybody pretty upset.. I know that they got me pretty upset, so they might have been enough to push Mark over the edge. Otherwise we haven't heard from him since. It appears that he opened a Google/Yahoo account and made a couple of posts with that. I truly doubt that the hacker forged those whole messages and all the info points to it being Mark who made the posts (only the ones by Mark!! not the other ones!!). I sure hope we hear from him again after things settle down. Perhaps someone here could email him privately? Bob > > Hi Ray > > [quoted text clipped - 11 lines] > > > > Bob > > I cannot believe that our Mark would post that or the other even nastier > > posts this person has made. I think a troll is using Mark's name in his [quoted text clipped - 14 lines] > here could email him privately? > Bob ** I just wrote him at his 'latest' email address and told him a bunch of women were talking about him, and we were going to start into the Chocolate soon, if he didn't resubscribe (in case he unsubscribed), and see what we were talking about.... We'll see if he's susceptible to Bribes!! :-< I *think he was using a dialup? or I would have received an error message by now if he had Discarded the later ID. address. I think my Outbound messages (on Outlook) only show up in the Sent Folder when the Dialup actually picks up their mails. The Phishers should be gone by now. The headers were sent to the College where the crossposting appeared to originate from. I don't know if they can necessarily tell which students were using the terminals while schools were on Mid-term break, but if they're hardwired in, the DNS numbers would show which terminals were used. I've added about 8-10 new Discard Sources to my Spamkiller following those Crossposts, so if 1-2 were from there, any mails to me would be discarded as they arrived. I'll let you know if I get a 'message bounce' if that address is changed (expired), or if I hear what's up. Otherwise he might just show up 'here'.... I don't know if he likes Chocolate or not.... Time will tell. G./ >>>??????????? >>> [quoted text clipped - 45 lines] > thing I want to do is make anyone mad,or uncomfortable in any way. > G-mal....[Ray] Hi Ray, I think we're the most accepting and forgiving group there is, thank goodness. Think most of us are pretty good at separating a health-related problem from just a nasty personality problem. Hope Mark comes back soon to let us know how testing went. Barb > >>>??????????? > >>> [quoted text clipped - 54 lines] > > Barb what ,or who is "chompy", is that a person, or a person's teeth during a szr. if it is "teeth", does anyone else here have a chipped tooth too? [some time ago some idiot stuck a metal spoon in my mouth...needless to say it a bad idea, it also cut my tounge up pretty F'n bad. >>>>>??????????? >>>>> [quoted text clipped - 57 lines] > what ,or who is "chompy", is that a person, or a person's teeth > during a szr. You got me. I don't know. > if it is "teeth", does anyone else here have a chipped tooth too? > [some time ago some idiot stuck a metal spoon in my mouth...needless > to say it a bad idea, it also cut my tounge up pretty F'n bad. Do you ever bite the inside of your cheek? Barb gmal wrote: >All my "fits" are severe, they are many...from >"petit" to"Grand mal". it feels that my pills are >only working about 50% of the time. The >surgery is not an option...ever. I am a lot like you really, so maybe I will be good support. At least, maybe I will be. I hope you will at least feel free to talk to me. My seizures started a little before I was 17 (I will be 18 in five days. How old are you?). My seizures range from petit mals to grand mals also. So far, I am known to have petit mals and grand mals, but I also believe I am beginning to develop simple partials. My grand mals are always severe, though the petit mals/absence seizures are usually not too bad. My pills don't always work either. They do nothing to stop the petit mals, but they sometimes prevent the grand mals. The side effects of my meds can be kind-of severe, from confusion and memory loss to bad dizziness and blurred vision. I am on 600 mg of Dilantin and 1000 mg of Keppra per day. Why isn't surgery an option? Do the doctors know why or where the seizures originate? I have not been technically diagnosed with epilepsy, but my seizures are from a chemical imbalance in the right side of my brain. My neurologist is considering having me get a VNS device, since my meds are not having affect. He really doubts I will get a lot of control from any medication. If you don't feel like talking here and you do want to confide in me, feel free to e-mail me. The e-mail address that shows here is my real one. It is okay if you decline my offer, but I want to help if I can. A lot of people in this group have given me a lot of support. > gmal wrote: > [quoted text clipped - 30 lines] > one. It is okay if you decline my offer, but I want to help if I can. > A lot of people in this group have given me a lot of support. I am 34 yrs old, I have been trying to live with Condition,{alone}since 1987. I know that some of the "others" want to know more about me...so here I go. I am Native{woodland Cree},from Edmonton,Alberta,Canada, but I have been living in B.C . in 1997 I had a major szr on top of a 100meter high Cliff,I was a member of a search party,trying to find a missing hunter.{my girlfriend's brother} Needless to say I fell off the cliff, and awoke in traction with a "Shattered" Hip,broken leg,svr Concussion;which seemed to increase the severity of my szr's. they were always g-mal's....now they are "G-MAL'S. The reason I am Alone now;she left me while I was in the the hospital,because she blames me for her brother's Death...The resources that were used to locate her Brother...were Diverted to save my life. That is "one" of the reasons, left the only home that I have ever known...THE GUILT WAS TOO MUCH MUCH FOR ME. why can't I forget? You must know that it's not your fault. You didn't choose to have a seizure at that time, nor was it up to you what resources may have been diverted to save you. I don't see how anyone could blame you for her brother's death. > I am 34 yrs old, I have been trying to live with > Condition,{alone}since 1987. I know that some of the "others" want to [quoted text clipped - 11 lines] > That is "one" of the reasons, left the only home that I have ever > known...THE GUILT WAS TOO MUCH MUCH FOR ME. why can't I forget? > You must know that it's not your fault. You didn't choose to have a seizure > at that time, nor was it up to you what resources may have been diverted to [quoted text clipped - 15 lines] > > That is "one" of the reasons, left the only home that I have ever > > known...THE GUILT WAS TOO MUCH MUCH FOR ME. why can't I forget? I know that you are right, and there is always going to be that "What if" Question that "I" will have to deal with.....but I couldn't handle all those "Questioning Eyes". He was a Good friend....Yet Life must move on. > gmal wrote: > [quoted text clipped - 30 lines] > one. It is okay if you decline my offer, but I want to help if I can. > A lot of people in this group have given me a lot of support. I have been diagnosed with seizures in the frontal,and temporal lobes...the surgery is not an option because;there is not one area where the the brain isn't affected-{my doc's words}. besides my Left,likes to know what the right is doing. I've seen more doctor's than I can remember. I really do hope that we can talk some more. Hello Ray, welcome to the group. I take it you live in BC? I'm in Vancouver myself. My epilepsy started in 87 as well, when I was 22. I managed without drugs for many years, but 3 years ago the seizures started increasing and I finally gave in. I tried Topamax but couldn't tolerate it, now I'm on Tegretol which is so-so, but at least I haven't had a grand mal for over a year and I can still speak and read English. I do get complex partials once or twice a month though and I'm debating whether to increase the Tegretol and get even stupider and wipe out even more of my memory for the sake of trying to have complete control... I've had 3 in the last 2 days, so I'm starting to lean more towards that. :( Anyway, keep posting! We care about you here. We understand, even though you might not always get replies to your posts. cheers, Hilary > Please I could use feed back, I feel that I am alone there are no support groups > where I am living. [quoted text clipped - 4 lines] > > G-MAL > Hello Ray, welcome to the group. I take it you live in BC? I'm in Vancouver > myself. [quoted text clipped - 11 lines] > cheers, > Hilary I think you were using the Controlled Release? version of Tegretol above? If your's are similar to Temporal Lobe type, my Dr. first increased Tegretol (1995), then when I had more szrs. we removed the Night dose (slowly) and replaced it with Frisium (Clobazam) that had just been approved in Canada. One-two later seizures we added Frisium to the AM dose of Tegretol. Last C.P. seizure I had was June, 1998. We're each different, but sometimes a combination of Meds. will boost the other for better control. G./ > > Hello Ray, welcome to the group. I take it you live in BC? I'm in > Vancouver [quoted text clipped - 23 lines] > sometimes a combination of Meds. will boost the other for better control. > G./ PM...600mg carbamazepine-cr,and 300mg dilantin[phenytoin].....AM...600mg carbamazepine....then repeat. that's my life, Ihave taken so much "teg's", that only now I am seeing some of the more severe side affects,such as my speech,spelling, and mem loss, and also that "LIGHT" hurts my eyes...somthing awful now. I used to be able to write a 2000 wrd essay, with a min of difficulty, now I find it hard to compose a paragraph. I just now realized that this "thing" was suppose to help me,is really been slowing taking my greatest talent...writing. Hilary...please talk it over with you Dr, before making any rash Decisions.[me,... I must ponder this] > > > Hello Ray, welcome to the group. I take it you live in BC? I'm in Vancouver myself. > > > My epilepsy started in 87 as well, when I was 22. I managed without drugs > > > for many years, but 3 years ago the seizures started increasing and I > > > finally gave in. I tried Topamax but couldn't tolerate it, now I'm on > > > Tegretol which is so-so, but at least I haven't had a grand mal for over a > > > year and I can still speak and read English. I do get complex partials once > > > or twice a month though and I'm debating whether to increase the Tegretol > > > and get even stupider and wipe out even more of my memory for the sake of > > > trying to have complete control... I've had 3 in the last 2 days, so I'm > > > starting to lean more towards that. :( > > > Anyway, keep posting! We care about you here. We understand, even though you > > > might not always get replies to your posts. > > > cheers, [quoted text clipped - 20 lines] > Hilary...please talk it over with you Dr, before making any rash > Decisions.[me,... I must ponder this] One of the places that Tegretol is used is for Complex Partial Seizures (Temporal Lobe included there from older websites or articles). Damage to the Temporal Lobes can affect short-term memory, irrespective of taking any medications. Some of the symptoms the earlier poster described Could have been from a particular type of Seizure (One of them at least didn't use any Medical name for the seizure type, so we couldn't compare them with types we have around here). I *think the speech and spelling effects might come from the *Left T.Lobe, since my Right T.Lobe damage didn't affect that for me. But the Short term memory and New Learning /Recall abilities come from Both sides. Too high a dose might affect its absorption. Alcohol and Grapefruit Juice affect its Metabolism and control abilities. Most of the AEDs have Potential of some side effects. I couldn't function without it. Avoiding it to prevent a Risk of a side effect (that doesn't happen for me) doesn't make any sense. I mentioned on another post my last seizure dates -- Dec. 97/ June 98. That only matters since I was told in 1993, based on MRIs and EEGs that I might 'hope for' 2-3 seizure per Month as a target. June is 6 years, so some of the targets will vary depending on the szr. severity and the person having them. Just because a pill might not work for one member here, doesn't Always mean it won't work for all of us. /G. > Hello Ray, welcome to the group. I take it you live in BC? I'm in Vancouver > myself. [quoted text clipped - 22 lines] > > > > G-MAL I live in Kamloops. > I live in Kamloops. Hey! I've been to Kamloops!! No-one else in UK ever seems to have heard of it :-) I went in (I think) 1993 - just before my tumour was discovered and the subsequent craniotomy. I was taken there by the Washington State Apiarist to the BC Beekeepers Convention. When I got there I saw my name on the programme - I had to sing for my supper. As it were. Because I was doing all sorts of peculiar things it was easy, I just sat on the corner of a table and hammed it up, the audience were rolling in the aisles. Thy'd heard of those crazy Brits but here was a real live one, a beekeeper to boot :-) It was February and very muddy, I was told that in summer it was just dusty. There was a shopping mall with a Scottish name ... It's a long time ago. Mary > > "turbinado" <turbinadoNOSP@Mtelus.net> wrote in message > news:<PtVjc.39522$NG2.26691@edtnps84>... [quoted text clipped - 18 lines] > > Mary Where exactly in the UK do you hail from..Mary? |
Reply to this Message |
 Sign In
 Join
 My Latest Posts My Monitored Threads My Blog My Photo Gallery My Profile My Homepage Start New Thread Enable EMail Alerts Rate this Thread
|
©2008 Advenet LLC Privacy Policy - Terms of Use
This website includes both content owned or controlled by Advenet as well as content owned or controlled by third parties.