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Medical Forum / Diseases and Disorders / Epilepsy / December 2004seizure moods and recall
I am getting more and more confused. I read about how ya'll have auras pre seizures and seizure after effects. Well I am evidently having the seizures without any pre indications or immediate after effects (that I am aware of). I noticed a large cut on my leg this morning that I have no idea where it came from (it has a scab so must have been there for a couple of days!). And while picking my nose (just kidding), I noticed that it is sore on the tip, like I fell face first onto a desk or something while reading or computing. I have been arguing with my room mate for the past couple few days thinking it was his fault for being in a bad mood, but now that I am starting to think about it more and more, maybe (hard to believe I know!)it is me and not him. I ain't sure. I am thinking I have just been "zoned" out for the past week or so. Can anyone relate as to how long they are (if they are at all), for a better word for it, "lost", after a seizure? I have been thinking all this time it was like minutes, or at the most, hours, but now I am starting to believe it may be days that the seizure effects last. (As I wrote that sentence I realize that the effects last a lifetime, not minutes or days and I shouldn't even post this at all but have typed this so it's going!)........... I know I probably keep posting and asking, but it is good just to know that someone is "listening" to a person. I have files and files of information about epilepsy but just get so tired of going thru them just to find the answer to one question. Smiley comments welcome............ owlvee I don't usually get warnings before seizures, especially the complex partials. After a grand mal it can take me up to a week to get back to normal, after a CP it can be 2 or 3 days - depends on the circumstances. > I am getting more and more confused. I read about how ya'll have auras > pre seizures and seizure after effects. [quoted text clipped - 24 lines] > Smiley comments welcome............ > owlvee > I am getting more and more confused. I read about how ya'll have auras > pre seizures and seizure after effects. That has been a problem for me also (simple partials and complex partials). I'm not sure what is the pre seizure stuff and what is the seizure itself. I know when I have a seizure I always feel funny. To me, that's the actual seizure, but I'm not sure. The only after effects (immediately after, I mean) I have had is intense sudden tiredness, and the only reason I say that is because it happens immediately after the seizure. Any of the other symptoms, the funny smell, deja vu, funny heart beats, nausea, etc. seem to come at any time and are not necessarily close to what I think is an actual seizure. I was having seizures last week, and I can still tell my brain hasn't cooled down because there is more paranoia and startling to unexpected noise and visual stuff than when I'm not having seizures. > Well I am evidently having the seizures without any pre indications or > immediate after effects (that I am aware of). [quoted text clipped - 8 lines] > know!)it is me and not him. I ain't sure. > I am thinking I have just been "zoned" out for the past week or so. It's getting to the point where I have to tell my family that I have had seizures or feel like I will have more because my behavior, I'm pretty sure, is a little goofy. A few nights ago, I was napping in the living room and my nephew entered the room and scared the daylights out of me. If I was normal, I wouldn't have startled so bad (I actually threw my arms up in the air. Good thing he wasn't close to me). I had to tell him what was going on with my brain, and he understood completely. I've never felt comfortable telling people that I'm paranoid, but I have to do it. I always have to tell people, no matter who they are, that I might not remember anything they have told me during this time. > Can anyone relate as to how long they are (if they are at all), for a > better word for it, "lost", after a seizure? I'm not exactly sure what you mean by 'lost.' When I have a seizure, it's almost like sneezing because you feel temporarily better after the sneeze but then your nose starts to stuff up again. Get what I mean? My seizures have a lot of symptoms but they aren't all necessarily present. I mean, this month I could have symptoms 1, 2, 3, 7, 9, 10 and next month have symptoms 1 2 3, 4, 5, 6 and 8. I'll tell ya, when I'm not completely normal, I don't trust myself to make important decisions. > I have been thinking all this time it was like minutes, or at the most, > hours, but now I am starting to believe it may be days that the seizure > effects last. Yup, that's what happens to me. There are minor symptoms that just hang and hang and hang on. When that happens to me, it usually means I'm not done having seizures yet. Yeah, this stuff can last for days although I don't know if that's a good thing or whether we should seek help at that point. > (As I wrote that sentence I realize that the effects last > a lifetime, not minutes or days and I shouldn't even post this at all > but have typed this so it's going!)........... Those are good questions and ones that nobody except us with epilepsy can really answer or understand. > I know I probably keep posting and asking, but it is good just to know > that someone is "listening" to a person. I have files and files of > information about epilepsy but just get so tired of going thru them just > to find the answer to one question. > Smiley comments welcome............ I haven't seen any web pages or books or anything that describe the feelings and sensations in detail. If they say paranoia, what the heck do they mean by that, how is it expressed, and so on. It is really hard to get that kind of information. I don't know if you were around when we talked about 'busy brains.' That was a good discussion, but I've never seen it talked about anywhere else. Barb > owlvee <snip good questions and answers> > Those are good questions and ones that nobody except us with epilepsy can > really answer or understand. That's the nub. I hear 'experts', doctors and neurologists pontificating about epilepsy. The best ones do say that there's a lot we don't know but very many say that they do know what happens and why and when and ... It's phooey. They DON'T know. They know some of it but laws are made because of the phooey. People don't get jobs because of the phooey. We can huff and puff as much as we like and they'll say that it's in all the books so it must be right and we don't know what we're talking about. Some probably think we can't reason properly because we have disturbed brains. It makes me very angry. I don't have grand mals. I had one, in my sleep, in February 1993. A benign tumour was removed and there's not been another since. But I do have quite regular (monthly and no it's not that, I'm well post menopausal) deja incidents. I WILL NOT tell my doctor about them because they're not a problem for me or anyone else. I don't think they would be for him either but rules are rules and he'd probably have to report it to the licensing authority and I might lose my driving licence - because it seems to be the reeceived wisdom that they lead to major seizures. It's never come up with the doctor so I haven't lied. If it did I think I would ... and I'm a very honest person. But I also think I'm intelligent and can - still - make responsible judgements about my health and abilities. That's one reason why I subscribe to this group, so that if I do have anything new which might be a warning of something bigger I'll have a greater chance of recognising it - from the experience of those who know (you lot) and not 'experts'. I also know that my Biggy came out of the blue - and it could happen to anyone who hasn't had any forewarning. Just like a heart attack or stroke. To take the notion of risk to its absolute limit there'd be no cars on the road. > I haven't seen any web pages or books or anything that describe the > feelings [quoted text clipped - 6 lines] > brains.' That was a good discussion, but I've never seen it talked about > anywhere else. And I don't think you will. You have to stick around here and listen to what real people with epilepsy say. That way you'll get a little bit of the truth. Those truths build a picture which will be worth all the websites (except the Idaho one), books, conventions and the like you can find. Until the experts start listening to us and accepting that we might have something relevant to say we're largely on our own. Sorry to rant, I feel very strongly about it - not for my sake as much as for others. Mary "Mary Fisher" wrote in message > > Until the experts start listening to us and accepting that we might have > something relevant to say we're largely on our own. [quoted text clipped - 3 lines] > > Mary Gee. I hadn't noticed ! :-> / > "Mary Fisher" wrote in message > >> Until the experts start listening to us and accepting that we might have [quoted text clipped - 6 lines] >> > Gee. I hadn't noticed ! :-> / <chortle> Mary Howdy Mary! Too bad I can't introduce you to Dr. Satran (he's retired.) He was one of my long string of neuros and the only one I ever came across who actually had epilepsy himself!  SignatureDave ???? http://www.howdydave.com > > "Mary Fisher" wrote in message > > >> Until the experts start listening to us and accepting that we might have [quoted text clipped - 10 lines] > > Mary > Howdy Mary! > > Too bad I can't introduce you to Dr. Satran (he's retired.) He was one of > my > long string of neuros and the only one I ever came across who actually had > epilepsy himself! I apologise to Dr Satran and others like him, I should have realised that there would be such people. But I think I did say "The best ones do say that there's a lot we don't know" and I'm sure Dr Satran would say that. Humbly, Mary > <snip good questions and answers> > > [quoted text clipped - 10 lines] > must be right and we don't know what we're talking about. Some probably > think we can't reason properly because we have disturbed brains. I definitely understand what you are saying about someone thinking we might not be able to think properly. I usually come to the same decision I made when I was having symptoms as when I'm not having seizures. I'm definitely not going to sign papers to buy a car or a house or something big like that if I am not given the opportunity to look at my decision when I'm not having seizure problems. Maybe I should have said I don't want to make decisions when I'm having seizure symptoms, not that I can't make decisions. Barb > It makes me very angry. > [quoted text clipped - 44 lines] > > Mary > I definitely understand what you are saying about someone thinking we > might not [quoted text clipped - 8 lines] > I'm > having seizure symptoms, not that I can't make decisions. Very sensible. Mary Howdy! I don't have forewarnings either! If I have a simple partial seizure, that's all that happens. My complex partial seizures usually last from 15 - 45 seconds. After that I appear to the rest of the world to be ship shape and Bristol fashion. HOWEVER My post ictal state usually lasts for 45 minutes or so. That means that I have amnesia from the time my seizure started until I come out of my post ictal state. A chunk of about 3/4 of an hour is just gone and I'm not even aware of the fact that I've lost it! SignatureDave ???? http://www.howdydave.com > I am getting more and more confused. I read about how ya'll have auras > pre seizures and seizure after effects. [quoted text clipped - 24 lines] > Smiley comments welcome............ > owlvee > Howdy! > [quoted text clipped - 12 lines] > ictal state. A chunk of about 3/4 of an hour is just gone and I'm not even > aware of the fact that I've lost it! Yes. That's your experience, and it might be the experience of some others. But not of all of us so you don't fit into a tidy box. Well, I know you don't in any way, thank goodness but I'm sure you know what I mean. We're all different and can't easily be classified. Even our symptomss can't always easily be described. Move over in that box, Dave, I want to snuggle! Mary > > Howdy! > > [quoted text clipped - 23 lines] > > Mary MMMMMmmmmmm.... That felt good... do that with your toes again! We won't tell them how we're fitted into the box -- let them use their imaginations a bit, eh? :p SignatureDave ???? http://www.howdydave.com "Dave ????" <dave@_nospam_howdydave.com> wrote in message news:%ubud.7237 >> Move over in that box, Dave, I want to snuggle! >> [quoted text clipped - 3 lines] > > That felt good... do that with your toes again! er - that wasn't my toes <smirk> > We won't tell them how we're fitted into the box -- let them use their > imaginations a bit, eh? :p Absolutely :-) Next time I'll try with my toes ... Mary > "Dave ????" <dave@_nospam_howdydave.com> wrote in message news:%ubud.7237 > >> [quoted text clipped - 16 lines] > > Mary EEEEEEEEeeeeeeeeeeeeeeeeee!!!!!!!!!!!!!!!!! SignatureDave ???? http://www.howdydave.com Dave ©¿©¬ wrote: >>"Dave ©¿©¬" <dave@_nospam_howdydave.com> wrote in message news:%ubud.7237 >> [quoted text clipped - 18 lines] > > EEEEEEEEeeeeeeeeeeeeeeeeee!!!!!!!!!!!!!!!!! Shhhhhhhhhhhhhhhhhhhhhhhhhh! Hey, quiet please :) There's other's around ~..~ trying to concentrate!! (bad joke for sure!) :) owlvee >> EEEEEEEEeeeeeeeeeeeeeeeeee!!!!!!!!!!!!!!!!! > [quoted text clipped - 5 lines] > > owlvee <very small voice> s o r r y ... <slinks off - on tip toes> Mary There is little that has been clear about my long seizure history, but 100% of the time I have an aura of forewarning. This is why my doctors allow me to drive. It is a sensation of being in a vacuum and lasts about 30 seconds. The actual partial complex seizure last approx. 30 to 45 seconds and feels like an eternity. The aftermath is usually over in 10-15 minutes for the milder ones, but have been shaken all day in other circumstances. Surgery on Rt. temporal lobe in 1978 gave 8 yr remission. Same siezure, same aura, etc. when they resumed. Hope this helps! > There is little that has been clear about my long seizure history, but > 100% [quoted text clipped - 5 lines] > Surgery on Rt. temporal lobe in 1978 gave 8 yr remission. Same siezure, > same aura, etc. when they resumed. Hope this helps! It must be helpful to be able to rely on a warning. Mary > It must be helpful to be able to rely on a warning Warnings are nice... SignatureThanks. Marco The Netherlands > There is little that has been clear about my long seizure history, but > 100% of the time I have an aura of forewarning. This is why my doctors > allow me to drive. then you are lucky ;o) I when I told my doctor (not a neuro... couldnt afford one) I had auras a letter was sent to the dmv as nice as you please (I have a copy and it was one sentence) and they suspended me.... again. Since the doctor wasnt a neruo he had a consultation with one in the practice and they both agreed to send the letter... I suspect for liability reasons, not medical. My fault for talking to someone who wasnt a specialist I guess... but isnt that supposed to be the right thing to do? Well now I do have one, and its the same... no driving until there are no auras... for 6 months AFTER the last one. Ah well |
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