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Medical Forum / Diseases and Disorders / Epilepsy / February 2004Doctor Worship and Labeling Obsession
These are two themes that I consistently experience here that I don't comprehend. I'm always hearing people referring one another to their physicians. If a physician does not have seizures, then I cannot imagine him/her as being any more authoritative than the combined wisdom within this group. I'm also reading alot of words of people sounding very authoritative about the labels applied to the various forms of seizures. Things like Complex Partial and Tonic Clonic. And stuff about which lobe it may originate from, whether that may be Temporal or Frontal or whatever. In the face of all the unknowns related to epilepsy, it may be comforting to project some authority on the situation. But my instinct tells me that all this labeling is somehow helping us avoid the task of digging in to the meanings of our seizures. Howdy! IMO That's about the same as saying that I know more about my Ford than my auto mechanic does because he owns a Dodge! re: "People sounding very authoritative..." I base my "authoritative knowledge on the diagnostic proceedings and medical knowledge of my PHYSICIANS! You may be an expert about what your seizures feel like to you, you can not make an OBJECTIVE OBSERVATION. re:"In the face of all the unknowns related to epilepsy..." I believe that what you mean is: UNKNOWN BY YOU! re: "And stuff about which lobe it MAY originate from..." (emphysis my own) There is not any question of "may originate" in my case. I have multiple brain lesions, focii and triggers in both temporal lobes and I have secondary epileptogenesis. re: "Meaning of our seizures" please explain what you mean here. My seizures are simple facts. Meaning... hummm... "What is the MEANING of the sky being blue?", "What is the meaning of the sun generating warmth?" Well... you get the idea (I hope!) Let's not confuse philosophy with science! If you are unwilling to accept the authoritive word of somebody who has medical training why in the world would you take the word of somebody on the net. For all you know we may all be a coven of sadists whose sole purpose is to fraudulantly misinform you and lead you down the path of distruction! BTW: How come you're afraid to attach a name to your post?  SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > These are two themes that I consistently experience here that I don't > comprehend. [quoted text clipped - 12 lines] > this labeling is somehow helping us avoid the task of digging in to the > meanings of our seizures. BTW: How come you're afraid to attach a name to your post? Thanks Dave for pointing out the misnomer of my Screen Name (aka Unknownorigen). I had switched because I had lost the thread of "Negative about Seizures" due to failure to mark unread. I still believe that there is much more unknown than known about seizures and that doctors need to project the image of being all-knowng. One of the ways they accomplish this is to get all focussed on putting names on things and then doing the standard thing of writing a prescription. I don't think we will advance our knowledge and understanding until we open our minds and explore the possibilities. The human being was designed long before we became a highly technical society. Seizures may be a terrible inconvenience in this day and age, but I believe they emanate from the inner depths of our humanity. > BTW: How come you're afraid to attach a name to your post? > [quoted text clipped - 10 lines] > terrible inconvenience in this day and age, but I believe they emanate from the > inner depths of our humanity. SHEEESH!!! I don't find my seizures deep and meaningful. I find them a pain in the a.s. They come from an area of cortical dysplasia, brought on by viral encephalitis, in the right frontal lobe of my brain, causing my body to do things I don't want it to do. That has NO meaning. I'm sorry if the term "right frontal lobe" upsets you, but that's the name of the part of my brain from which tests have identified it as originating. I hope you don't also find the terms "cortical dysplasia" or "viral encephalitis" offensive. I have a little understanding of these terminologies and I trust my neurologist's years of study have given him an understanding of them as well. Therefore they are terms which I find acceptable and most others here, who have knowledge of these subjects (as epileptics tend to have) will find them acceptable, too. I agree that the medical profession has a tendency to treat symptoms rather than treating causes, by simply writing a prescription to mask the symptoms, but for now I think the inner depths of my humanity has very little to do with the treatment or cause of my seizures. > I'm sorry if the term "right frontal lobe" upsets you, but that's the name > of the part of my brain from which tests have identified it as originating. > I hope you don't also find the terms "cortical dysplasia" or "viral > encephalitis" offensive. Is it a well defined area of cortical dysplasia that could be removed by surgery? I suppose this has been considered before. Is it located in a sensitive area that would be a big problem if removed? Just curious. > > I'm sorry if the term "right frontal lobe" upsets you, but that's the name > > of the part of my brain from which tests have identified it as [quoted text clipped - 5 lines] > surgery? I suppose this has been considered before. Is it located in a > sensitive area that would be a big problem if removed? Just curious. I did end up having the surgery three years ago. They removed a section of dysplasia (undeveloped brain) about the size of a golf ball. The seizures went from up to 15 a day, down to about one a fortnight, with greatly decreased severity. However, my neurologist suggested I try a new med (topirimate - topamax) to try to get rid of the few remaining seizures and it all turned to custard, with the seizures returning to the way they had been pre-surgery. I'm now back to having up to 15 seizures a day. Oh well.....I tried. Howdy TIMMCO! Being in the writing business I am at a loss to comprehend your argument about "putting labels on things." Putting labels on things is just the natural process of the evolution of language. The more scientifically, philosophically or culturally advanced a culture becomes, the more labels they need to specify the advances in their knowledge. e.g.: The Elements: At one time there were only 5 words that covered all of the elements known to chemestry: Air Fire Water Earth and Ether. Now we have more than 100 words (hydrogen, helium...) Once we got that far we had to invent new labels for sub-atomic particles! Labels aka: words are necessary if one wants to communicate information - scientific, medical, philosophical, whatever. Here are some labels that have been attached to me: male, caucasion, blonde, hazel eyes, epileptic, diabetic, middle-aged (depending on your point of view) baritone, american, I was a Boy Scout, that means that I have these labels too: trustworthy loyal helpful friendly curtious kind obediant cheerful thrifty brave clean and reverent. And my favorites: kind, considerate, handsome, intelligent and modest. :) SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > BTW: How come you're afraid to attach a name to your post? > [quoted text clipped - 10 lines] > terrible inconvenience in this day and age, but I believe they emanate from the > inner depths of our humanity. Dave wrote "Putting labels on things is just the natural process of the evolution of language. The more scientifically, philosophically or culturally advanced a culture becomes, the more labels they need to specify the advances in their knowledge. e.g.: The Elements: At one time there were only 5 words that covered all of the elements known to chemestry: Air Fire Water Earth and Ether. Now we have more than 100 words (hydrogen, helium...) Once we got that far we had to invent new labels for sub-atomic particles! Labels aka: words are necessary if one wants to communicate information - scientific, medical, philosophical, whatever." Howdy Dave - I too have a great appreciation for language as an incredible invention and communication tool - and I also share with you the the same eye color, among many other things. As you say, at one time the elements were limited to the 5 you mentioned. Generation after generation of pupils went through school being told that was the nature of reality. I imagine the first thinkers who bucked that descriprion were excommunicated or burned at the stake. I guess my beef with putting the focus on the labeling has a couple of sides: first, it creates the illusion that we know what we are talking about. We sound like we have nice logical descriptions of reality when we are only scratching at the surface. Does it really make any difference which lobe was the source of the first electrical impulse that led to the seizure? And what about the strong associated emotions and insights mentioned in the "Negative about Seizures" thread. I view seizures more in the realm of dreams. Carl Jung and others tried to make some logic out of dreams but we have a long way to go. It seems that by trying to put things into a nice logical box, we deprive ourselves of further insight and discovery. Back to the original example of naming elements, we should always have the humility to acknowledge that this is just our current stab at understanding, and if history is any example, we probably have a long way to go. I hope I made some sense. Tim > I guess my beef with putting the focus on > the labeling has a couple of sides: first, it creates the illusion that we > know what we are talking about. We sound like we have nice logical > descriptions of reality when we are only scratching at the surface. Does it > really make any difference which lobe was the source of the first electrical > impulse that led to the seizure? Hi Tim, I think part of the reason we use the terminology is not to sound educated, but to identify with others who have the same cause / focus for their seizures. Eg: I have seizures coming from my right frontal lobe, caused by cortical dysplasia in that area. Someone else who has the same cause / focus can relate to where I'm coming from and maybe we can compare the way our seizures manifest themselves and the treatments used, possibly finding common elements and triggers to avoid, which we wouldn't have found had we not discussed the area of focus, etc. One human trait is to desire to find like-minded people with areas in common which can be discussed, which is why we are here on this newsgroup to begin with. Regards, Darryl. Howdy! Guess what I'm really having problems with is exactly what you mean by "labeling." "Focus on the labeling"? - You totally lost me here mate... First: I'm not sure what you mean by "labeling" Second: I'm not sure what you mean by "focus" Third: I don't know WHO is putting WHAT focus on WHAT labeling. "Creates the illusion that we know what we are talking about" I know exactly what I'm talking about when I say that I have focal points and trigger points in both my right and left temporal lobes. I also know exactly what I mean when I say that I have secondary epileptogenesis. If somebody else doesn't know what "secondary epileptogenesis" is they can look it up in a medical dictionary and then we'll both know exactly what I'm talking about too. I would imagine that just about everybody else who is familier with epilepsy also knows exactly what I'm talking about. My understanding is not dependent upon my being able to diagnose myself. As for some of your other terms, a mutual agreement will never be achieved: What is reality? What is an illusion? This is the stuff that philosophy is based upon. Your last point: "we should always have the humility to acknowledge that this is just our current stab at understanding" As far as I am concerned this goes without saying and is mutually understood to be the case. Although knowledge, insight and understanding are always in a state of flux, as long as we are all living in the same time frame and have the same "current stab at understanding" we are able to communicate with each other. "Current understanding" is not necessarily incorrect! That's the implication that I'm getting (don't know wheather you intended it that way or not.) SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > Howdy Dave - <snip> > I guess my beef with putting the focus on > the labeling has a couple of sides: first, it creates the illusion that we [quoted text clipped - 13 lines] > > I hope I made some sense. Tim Howdy! Ohhhhhhh.... I'm starting to see (albeit through a glass dimly) what your talking about. TECHNICAL TERMINOLOGY aka: buzzwords ???????? If we want to talk about medical conditions it is necessary to use medical terminology. This allows me to say something with one word that might otherwise take 2 or 3 paragraphs. SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > Howdy! > [quoted text clipped - 68 lines] > > > > I hope I made some sense. Tim I am sorry if I have lacked clarity but most appreciate the thoughtful additions to this thread. I have tried to examine myself and understand what it is that I am seeking to communicate. Though I have been experiencing seizures for 13 years, I continue to question what they are. From the perspective of a newcomer visiting alt.support.epilepsy, there would seem to be an image that seizures are pretty well worked out. We've got names for the various different types and we seem convincing about where in our brains they originate. We also project the image that these epileptic episodes are an invariable curse on life. Someone new coming on board might well get the impression that there is no other way to look at the matter and forever close his/her mind. The human unconscious is a vast, largely unexplored territory. We get hints of it through our dreams. I cannot help but see a linkage between the death of my brother, with whom I had my closest human link, and my first seizure shortly thereafter. In fact I was a very isolated person and it was quite unhealthy for me to have limited my strong emotional links to such a small circle. (which included my dogs). The effect of my seizures over time was to break down my psyche which had been formed over the course of 41 years. Slowly but surely, I have come to join the human race. This has been very positive for me, though I still have a long ways to go. This does not dismiss the gross inconvenience of car crash, loss of driver's licence, broken teeth and social embarrassment. Nor the painful emotions that seizures might uncover. I feel that new folks coming to this group ought to be given the impression that there is not just a single way to view seizures. Perhaps they may be able to share some aspects of their experience that could be of benefit. Yet this would be difficult if they are made to feel like outcasts because they have a differing point of view. Howdy! AFAIAC there are 9 ways of looking at epilepsy. Here are the steps that I took along the trail to accepting my epilepsy: 1. Epilepsy! -- What's epilepsy? 2. Refusal (No I DON'T have epilepsy!) 3. Why me? / Why is God punishing me? 4. I'm some sort of freak! / My life is ruined! / I can't do any of the things that I want to do! 5. OK I have epilepsy... Guess I'm going to have to learn to live with it! -- Now I'll find out who my REAL friends are! 6. I am not an epileptic, I'm a person who happens to have epilepsy! -- Lots of great people have had epilepsy! 7. Life goes on. 8. Epilepsy/epileptic what's the big deal? People with diabetes are diabetic; people with asthma are asthmatic. It's just a word... 9. Epilepsy is just one facet of what makes me ME! -- This is ME, take it or leave it! A lot of folks around here haven't gotten past # 6. Once I got to step 7 I started making a LOT less noise about it. The folks who are still struggeling with it need a wailing wall! (a.s.e.) Those of us who have learned to live with it answer a lot more questions than we ask. SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > I am sorry if I have lacked clarity but > most appreciate the thoughtful [quoted text clipped - 31 lines] > be of benefit. Yet this would be difficult if they are made to feel like > outcasts because they have a differing point of view. I think I skipped all 8 steps back in '98 when I was dx'ed and went straight to #9, thinking: "This is just another part of the screwed up life of me..." ("but at least now there's something that will gain me some sympathy from others") I'm weird, and I know it. - Charlie > Howdy! > [quoted text clipped - 84 lines] > > be of benefit. Yet this would be difficult if they are made to feel like > > outcasts because they have a differing point of view. Dave ©¿©¬ <dave@_nospam_howdydave.com> wrote >Howdy! > [quoted text clipped - 32 lines] >Those of us who have learned to live with it answer a lot more questions >than we ask. Hi, There may be 9 different ways of looking at epilepsy (IYO) and (IMHO) I think you've managed a fairly good analysis of the situation. What must also be taken into account is that in life we all have our ups and downs and our moodswings and that will affect our outlook on our epilepsy. I've said before that epilepsy has probably played a major part in the creation and moulding of who I am. It is part of me, I wouldn't be me without it, hence I get the #9 badge. But when I underperform, or am lacking in confidence or self-esteem, I will also be classified as #4. Epilepsy is part of me, but that doesn't mean I want it or the problems it brings. I've got it, tough, but at least I'm ME. The classifications appear to follow an incremental scale towards self- acceptance (and the steps taken as one gets used to having epilepsy). I am not completely in agreement with the hidden suggestion arising from this ordering that #1-9 is a value-system, running from whiners to acceptors. If someone is in total denial (#1) or at the "Why me?" (#3) stage then let them be there. Why do you thing the world has wailing walls and even an accepted phrase for them? They obviously perform a function. I believe that anyone has the right to feel anyway they want, from #1-9 without being any less of a person. Secondly, and thankfully more briefly, I refuse to be quiet about epilepsy and the problems it brings. I tell people because it seems to me that they won't find out any other way. Only if the public learns more about the condition will it become less of a stigma. It is not a high-profile condition, and the accompanying effects are even less well known. Our UK education system now has a Citizenship section dealing with acceptance of all sorts of things... but I have yet to see epilepsy mentioned there. Even in the 21st century our so-called civilised world has a considerable way to go. Regards, SignatureMalcolm Howdy Malcom! An incrimental scale... WELL DONE!! These are MY steps on the road to acceptance of MY epilepsy. Everybody is different. re: Your second observation -- I'm sorry to say that I've become a bit of a fatalist on this issue. There is no way that I can expect to change the world. I have come to the conclusion that I will be satisfied if I can have an effect on my immediate circle of acquaintences. Once I've done that, I'll let the ripple effect do the rest. I'm not going to knock my head against a brick wall in the attempt to tear the wall down. That's a job for St. Jude! :) SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > Hi, > [quoted text clipped - 33 lines] > > Regards, Dave ©¿©¬ <dave@_nospam_howdydave.com> wrote >Howdy Malcom! > >An incrimental scale... WELL DONE!! > >These are MY steps on the road to acceptance of MY epilepsy. But MY steps would be very different; they would encompass a lot of your steps, but there would probably be more than 9 overall as I believe epilepsy digs much further into the psyche than just having seizures. But I have promised myself an early night, so I may consider how many steps I have taken *so far* during the W/E. >Everybody is different. Yes. So what is the reasoning behind having a scale? Nobody is going to follow the same route through the steps! :p I know, it's another Indiana Jones code! >re: Your second observation -- >I'm sorry to say that I've become a bit of a fatalist on this issue. [quoted text clipped - 6 lines] >I'm not going to knock my head against a brick wall in the attempt to tear >the wall down. That's a job for St. Jude! :) I am a teacher. Knocking my head against a brick wall is part of the job. SignatureMalcolm aka St.Jude Hi Malcolm, I agree whole heartedly with your views on the psyche of the epileptic, though I tend to let the world believe what it wants. If people don't accept my epilepsy that then becomes their problem not mine. (Just this afternoon I tried to educate the whole of the parking lot of the local grocery store by having a screaming, hysterically laughing CP seizure in the middle of the crowd there. No one was educated, some just stopped stared and some walked away as fast as they could as if they were in danger. Not my problem.) I guess you could class me as a 9,8 and 7 all at the same time. I have been other numbers in the past and stayed at some of them for an awfully long time. So I agree with your working out of the situations we all face Dave, but at the same time I will also have to agree with Malcolm that who cares if someone is a number 3. We were all in the lower scale at some point in our lives and it may take other people longer to accept their condition and that is what makes us all different and very interesting people. The reason that I am on this newsgroup is to try and help out in anyway I can. I have lived with epilepsy now for nearly 30 years and I know and understand what it is doing to me, what it has done and how best I can live with epilepsy. I dare say that there are a lot of people on here who don't have a good understanding of epilepsy and that could be why they are not at a 9...doesn't mean they are whinging (IMO), just that they want answers that sometimes a Dr can't give them, but someone with the experience might be able to. Cheers Darryl & Patsy > >Howdy! > > [quoted text clipped - 72 lines] > -- > Malcolm Howdy Daz&Pat! BTW: Which one am I talking to? There is a simple reason everybody isn't up to 8&9 - TIME! How long has a person had epilepsy? It takes some people a lot longer to fully accept their epilepsy. MOF some folks never get there. That's ok by me, cuz' (everybody knows what I'm gonna' say right?) everybody's different! SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > Hi Malcolm, > [quoted text clipped - 106 lines] > > -- > > Malcolm This is Darryl, I'm the one with E. Patsy is just my major support in life....also happens to be my wife. > There is a simple reason everybody isn't up to 8&9 - TIME! > MOF some folks never get there. That's ok by me, cuz' (everybody knows what > I'm gonna' say right?) > > everybody's different! Who says that everybody has to get to a 9? Some folks never get "THERE". Is that the be-all-and-end-all? Life can go on if one isn't at a 9 on this scale. One can live a full and rewarding life at any of these levels.........*labels*. Darryl. >This is Darryl, I'm the one with E. Patsy is just my major support in >life....also happens to be my wife. [quoted text clipped - 13 lines] > >Darryl. I agree completely with you Darryl - the scale to #9 assigns a value to each level, making it seem that the goal in life is to reach the end, like the 12 Steps towards breaking alcoholism in a rehab centre. Labels for conditions are important, both medically and psychologically, but having incremental labels of how 'at ease' you feel about having that condition seems a dubious idea. Someone coming onto this NG at the "F*ck, f*ck, F*CK - WHY ME????" level will feel they are at level one and will not exactly be encouraged! But take away the number, and you lose the label. So if Dave had presented them all jumbled up, we would have had a good debate about the other states in which we have found ourselves during our years of epilepsy. I am on this group not for altruistic reasons, but for psychological security - if I can find other people with my experiences, or who feel the way I do, then I will know I'm not alone. Even after 27 years of E, I need some support. SignatureMalcolm > But take away the number, and you lose the label. So if Dave had > presented them all jumbled up, we would have had a good debate about the > other states in which we have found ourselves during our years of > epilepsy. Good point Malcolm, Could we take it a step further and ask others to put in their progression of feelings towards their epilepsy? Not necessarily limited to the suggestions given by Dave. For example: As for myself, I started out with "Why me?" for a year or two (as an 8 yr old it was as far as my opinion of epilepsy went). I then went to "My condition isn't epilepsy." (Mainly due to the fact that my neuro said this was the case and it seemed a big deal to my mother. I stayed at that for several years). Then I moved to "OK, I have epilepsy... Guess I'm going to have to learn to live with it!" (I had accepted that part of my life was scaring the shite out of people when I have CP seizures in front of them and start laughing and screaming hysterically. Started getting used to people looking at me strangely as if to decide if I was dangerous, or contagious). Then to "I can't do any of the things that I want to do!" (Was at a low point in my life - I had been driving while under the influence of epilepsy. A seizure hit and caused me to leave the road and hit a pedestrian. In case you're wondering, IMO NOBODY with epilepsy should drive....I learned that the hard way). Then "Epilepsy/epileptic what's the big deal? Epilepsy is just one facet of what makes me ME! -- This is ME, take it or leave it!", combined with "I have it better than a lot of people, I'm really quite lucky". This wasn't really a number of steps on the way to where I am now, but rather a slow shift in attitude. As my memory deteriorates, next will probably be "Epilepsy, what's epilepsy?" ;-) Let's hear how your attitude has changed towards epilepsy as you've lived with it. Cheers, Darryl. >> But take away the number, and you lose the label. So if Dave had >> presented them all jumbled up, we would have had a good debate about the >> other states in which we have found ourselves during our years of >> epilepsy. > >Good point Malcolm, >Let's hear how your attitude has changed towards epilepsy as you've lived >with it. WARNING, WARNING, WARNING. My Epilepsy Weblog (27 years condensed) Start at 19 Yrs old. Brief disturbances in awareness for two years - weird feelings. Maybe I ought to see a doctor? What did he say?! Epilepsy? This isn't epilepsy - epilepsy is when you fall over and have convulsions?! Oh good - normal MRI and EEG with just one wobbly line. And the doc said I wouldn't lose my bike licence." OH sh.t! If all it does is affect my hearing, I can't hear much inside a crash helmet anyway, so bugger them, I'm going to drive anyway. WHY ME? WHY ME? WHY ME? WHY ME? WHY ME? WHY ME? WHY ME? WHY ME? WHY ME? WHY ME? WHY ME? WHY ME? WHY ME? WHY ME? WHY ME? WHY ME? (2 years spent coming home from work, putting on my boots and wandering over the forest kicking viciously at the heather wondering WHY ME?) Why do I have no social life? Why don't I even want a social life? Whoopee, I've found a sport (marathon running) which I enjoy! Good job I can drive to get to the events. (2 years of compulsive marathons later, and the start of CPS) Huh? My running has become a trigger for another type of epilepsy? Well, I'm not going to let epilepsy rule my life. I'm NOT giving up running. (2 years of CPS whilst training every night, and some mighty silly seizures) OK. I give up. I guess I'm not going to win this one. Deemed unsuitable for surgery, as focus couldn't be located. Stopped at random police check and done for no licence, no insurance, no road tax, driving whilst medically unfit, driving against medical advice, forgery of tax disc, defrauding of tax payment. Better get a bicycle whist this goes through court. (6 days later, staring out of hospital window after a lorry didn't notice me on the dual carriageway) "So this is what happens when I try to obey the law? Surely life can't be this unfair?" WHY ME? WHY ME? WHY ME? WHY ME? WHY ME? WHY ME? WHY ME? WHY ME? WHY ME? WHY ME? WHY ME? WHY ME? WHY ME? WHY ME? WHY ME? WHY ME? "I think you'd better take the rest of term off. Here's a prescription for some valium." Enter psychiatrist. Exit psychiatrist. (Ed. I've only just remembered some of that!) Jollied along for a few years, obtained driving licence by being economical with the truth, but never quite integrated into society. All pastimes were solitary. I'm going nowhere. I seem to have lost all interest in everything apart from a few obsessions. This bloody epilepsy - just imagine where I could be in life if I hadn't had it? I have two degrees, a good mind, and yet I'm stuck here. Self-injury - I'll get this bloody thing out from under my skin. Suicide attempt. Enter psychiatrist, enter psychologist, enter CBT therapy. Also a wealth of psycho-meds. Why don't I look people in the eye then? Why can't I remember faces at all? What have I got to be ashamed of? Where does all this hypergraphia come from? And why is my memory as much use as a piece of tissue-paper in a waterfall? Why can't I shake this "I am different" feeling off? And where has my intellect gone? NHS Trust is rearranged, remove psychiatrist, psychologist and therapy. Boss thinks epilepsy will lower the tone of the school. Take driving lessons, pass test and have a car. Reading psychology book: Aspergers Syndrome - I can tick almost every one of those boxes! But I had a reasonably normal childhood...didn't I? Oh, even some bits of that fit me. Compulsive reading and finding out more. That's me through and through! That's crazy - how can I get to my 40's with AS and not know about it? I don't believe it. (Ed. Another thing to be in denial about? <grin>) Boss makes me redundant, then appoints my assistant into my position. f.ck him. New job, buy house, total change of life after 20 years. Move 'home NG' from social phobia NG to autism NG, and find a much more understanding group of people, with a very different mindset from the social-phobia and epilepsy crowds, even though I feel a bit of a fake there. Realise that we are what we are, and whining won't change it. OK, maybe my life would have been very different without it, but I wouldn't be ME without it or the effect it's had on me. "About one in four autistic individuals begin to have seizures during puberty." (Autism Research Institute). I guess that settles and explains it all, doesn't it? The epilepsy is tied in with some form of AS. Ten years without a big seizure (anything else could be dismissed as lack of sleep, low blood pressure, etc). Maybe I can give up these meds, and get rid of being epileptic for good? Then maybe I'll get some memory faculties back and less brain fog? ....I must get round to seeing the doctor to arrange this :) SignatureMalcolm > What did he say?! Epilepsy? This isn't epilepsy - epilepsy is when you > fall over and have convulsions?! But isn't that true? Ask the average man-on-the-street for a definition and isn't that what you'll get for an answer? My US Webster's dictionary defines it that way. What does your UK dictionary say? At age 30 and still not properly diagnosed although I'd had this condition & feelings since childhood, a new doctor (psychiatrist) told me it sounded like "epilepsy". I thought he must be either crazy or incompetent and never went back to him. I'm not in denial. I have a serious neurological disorder and have seizures, both simple & complex partials, but why would this be called "epilepsy". It seems to me that words loose their meaning when everything is tossed into the category of "epilepsy". Just trying to be consistent with the "Labeling" in the subject header. Bob > > What did he say?! Epilepsy? This isn't epilepsy - epilepsy is when you > > fall over and have convulsions?! > > But isn't that true? Ask the average man-on-the-street for a definition and > isn't that what you'll get for an answer? My US Webster's dictionary defines it > that way. What does your UK dictionary say? dictionary.com says: Any of various neurological disorders characterized by sudden recurring attacks of motor, sensory, or psychic malfunction with or without loss of consciousness or convulsive seizures. But my Longman Dictionary of English Language and Culture says: an illness of the brain which causes sudden attacks of uncontrolled violent movement and loss of consciousness .... But then Longman's also have entries for Robert de Niro and Al Pacino... - Charlie Becoming realistic and acknowledging our conditions, and moving away from the self-pity complex is a great step. I would like to encourage folks to delve into the seizure's aftermath. Rather than becoming fixated on trying to define the correct label for the type of seizure experienced, or whining about all the aches and pains we may feel in our bodies, I wish some people would go into a meditation mode and try to experience the changes in our psyches that result from the seizure. In this hum-drum day and age, it may be difficult to be quiet and contemplative for a few days, but if anyone is able, their reports would be greatly appreciated. >Becoming realistic and acknowledging our conditions, and moving away from the >self-pity complex is a great step. I would like to encourage folks to delve [quoted text clipped - 5 lines] >quiet and contemplative for a few days, but if anyone is able, their reports >would be greatly appreciated. I use to try to time my seizures when I was out running, by resetting my stopwatch and hoping to stop it when I came out of seizure mode. In two years, that is about six hundred seizures, I only ever managed to do that once (70 min). When you come out of seizure, and have thrown away your torch, don't recognise *any* familiar landmarks, may or may not have all your clothes, and don't know the way home, the last thing I would think of would be taking the time to meditate on the experience. We are all different. I get the feeling that my seizures were very different from yours. SignatureMalcolm Malcolm writes that after a seizure, " the last thing I would think of would be taking the time to meditate on the experience." Thanks Malcolm for sharing your instinctual reaction. I was not so much referring to the first few minutes following the seizure during which we are becoming reoriented, but to the next couple of days after we are in a safe and secure location. The reason I made the request was because it requires us to move past our instincts and to take conscious actions. I hope some folks are able to take a few days after their seizures and calmly meditate on what goes on inside them. Hi Tim, Well, even if I thought this would help me in even the remotest of ways, I would be in a constant state of meditation and not get much done....it's hard to have the spare time to meditate when you are having up to 15 seizures a day. Cheers, Darryl. > Malcolm writes that after a seizure, " the last thing I would think of > would be taking the time to meditate on the experience." Thanks Malcolm for [quoted text clipped - 4 lines] > and to take conscious actions. I hope some folks are able to take a few days > after their seizures and calmly meditate on what goes on inside them. Hi Daryl, It sounds like you have already tapped into an innate source of wisdom, allowing you to prejudge the efficacy of a proposed course of action. If I had been equally blessed, I imagine I would likewise have little interest investigating these profound events in my life. As I am lacking, I do seek, and was curious about the experience of others. Cheers, Tim Hi Tim, Well, even if I thought this would help me in even the remotest of ways, I would be in a constant state of meditation and not get much done....it's hard to have the spare time to meditate when you are having up to 15 seizures a day. Cheers, Darryl. Yes Tim I have, it's called medicinal science. Dr's have spent years studying how the human body works and I trust their judgement more than I would trust the ramblings of my own mind, sitting cross legged in a smoke filled room in a pyramid, chanting "ohmmm, ohmmm, ohmmm". Just to reiterate what I said before...I would not have enough time in the day to eat, sh.t and spend time with my wife if I was to meditate after every seizure. You may have the time to sit in the pyramid and chant, but when I have up to 15 seizures in one day that is not all that time effective for me. I have enough problems trying to get everything in my day done now, between seizures, without having to put more pressure on myself saying I must sit down and think about the 9th seizure I had the day before. If it works for you, good on you, but as others have tried telling you, everyone is different. Darryl > Hi Daryl, > [quoted text clipped - 16 lines] > Cheers, > Darryl. >Hi Daryl, > [quoted text clipped - 3 lines] >investigating these profound events in my life. As I am lacking, I do seek, >and was curious about the experience of others. Tim, As you seem to consider frequent seizures to be a blessing, have you considered a home ECT machine? You could spend alternate days getting zapped and feeling zonked. SignatureMalcolm It seems that my request to hear reports on the post seizure experience has been misinterpreted. I was not interested in the type of seizure, or name given to the seizure, or the experience of the seizure itself, but rather the post seizure experience - just being with oneself and experiencing what occurs within during the time after a seizure. I contend that seizures have a function and that the effects cannot be discovered until after the event. By the way, it seems that we have an astute censor here who decides whose views are acceptable and whose are not. Apparently I have been judged a subversive and consequently have been blocked from the epilepsy site under my primary screen name TIMMCO and under a secondary name UnknownOrigen. Given the way the winds are blowing, I would not doubt if this is my final possible post under MizterGeometry. I request the censor make a posting in which he/she describe what are considered unacceptable views and state why the curtailing of freedom of expression is considered an asset. Also please describe how the decision was made to block my screen names from access to the board. If anyone else knows anything about this subject, I would appreciate hearing. Thanks, Tim > It seems that my request to hear reports on the post seizure experience has > been misinterpreted. I was not interested in the type of seizure, or name [quoted text clipped - 15 lines] > If anyone else knows anything about this subject, I would appreciate hearing. > Thanks, Tim Hi, For what my opinion is worth, if someone is planning to block Timmco from posting here.....please don't. He puts some interesting posts on here, and gets us thinking. He's not afraid to broach controversial topics and also to contradict himself ;-) My wife would like to strangle him with some barbed wire, but I like him here......he's funny. I love coming in here first thing in the morning, reading the latest posts from Timmco (with his multiple personalities) and having a good laugh. Should we put this to the vote??? All in favour of letting Timmco stay??? Cheers, Darryl. This is an 'Unmoderated' newsgroup. No messages are or can be Blocked or Censored. If they're not arriving, they're not configured properly or the sender should get an error message back if it's not compatible with whatever the settings needed are. (Howdy or ?? might know.) There have been enough Junk mails *not related to his or Epilepsy Posts in the last week, that exceed 30-50K long, that get into the group from Robot posters in the past 2-3 weeks. If there were a moderator or censor, those would have been removed. I think one new one is still up on my reader from yesterday. Two from a week ago remained online, tying up server space for almost a week. Those weren't related to what we're doing here. They were Robot spamruns. /G. > > It seems that my request to hear reports on the post seizure experience has > > been misinterpreted. I was not interested in the type of seizure, or name > > given to the seizure, or the experience of the seizure itself, but rather the > > post seizure experience - just being with oneself and experiencing what occurs > > within during the time after a seizure. I contend that seizures have a > > function and that the effects cannot be discovered until after the event. > > > > By the way, it seems that we have an astute censor here who decides whose views > > are acceptable and whose are not. Apparently I have been judged a subversive > > and consequently have been blocked from the epilepsy site under my primary > > screen name TIMMCO and under a secondary name UnknownOrigen. Given the way the > > winds are blowing, I would not doubt if this is my final possible post under > > MizterGeometry. I request the censor make a posting in which he/she describe > > what are considered unacceptable views and state why the curtailing of freedom > > of expression is considered an asset. Also please describe how the decision > > was made to block my screen names from access to the board. > > > > If anyone else knows anything about this subject, I would appreciate hearing. > > Thanks, Tim > [quoted text clipped - 14 lines] > Cheers, > Darryl. >This is an 'Unmoderated' newsgroup. No messages are or can be Blocked >or Censored. Beginning yesterday, I get an immediate AOL message "Database Unavailable. Try again later" when I attempt to access the group from either screen name "Timmco" or "Unknownorigen". This is not about blocked or censored messages. It is about a blocked support group named "alt.support.epilepsy." As you can see I have no problem with my current screen name, nor have I made many postings here under Miztergeometry. Someone might reply later if they recognize that message. I've never seen a 'database not available'. Would it be because it has to get from where you are (aren't you the one in New Zealand? or did I mix that up (too) ? ) onto a N.America server if it's to get to some of us. I *THINK this is the weekend of U.S. Superbowl (football) and someone was going to try cause a Denial of Service attack on N.America during that (was on one of the geeks groups). I'm in Canada, North of U.S. and haven't had any lockups, although there's More trash getting into mails than a week ago (from 1-2 each log on up to 5-7 now). Maybe someone who watches football will be around in an hour or so, and say if they heard that too or not. G..R. Geek stuff. MAYBE someone might have a 'ping' trick you can do to check if your definitions are getting to alt.support.ep group o.k. E.G. IF AOL drops a packet of your message, will they come back and Retry or tell you (at least) that they Dropped some of the message?? (I don't know, just wondered). I think mails are still sent in 256 character Chunks by Multi routes and then the puzzle is Reassembled at the server that handles alt.sup.ep OR at a receiver's mailbox. IF something happens to one of the packets the rest would get garbled. (I get garbled's mail each day too... :-< ) G.R. > >This is an 'Unmoderated' newsgroup. No messages are or can be Blocked > >or Censored. [quoted text clipped - 5 lines] > see I have no problem with my current screen name, nor have I made many > postings here under Miztergeometry. Howdy! You may want to go to your news server and download the newest set of newsgroups. Maybe something got screwed up when they updated their database! As for AOL... Can't help ya' there, I stay away from AOL like the plague 'cuz it has a nasty tendency to destroy other internet-access software that happens to be sitting quietly within your computer at the time (notably Netscape!) SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > >This is an 'Unmoderated' newsgroup. No messages are or can be Blocked > >or Censored. [quoted text clipped - 5 lines] > see I have no problem with my current screen name, nor have I made many > postings here under Miztergeometry. MOF: I've heard of a few servers DROPPING newsgroups from their database due to insufficient activity. That can't be the case in your situation since the group was clearly being accessed by at least one customer. BTW: All of my experience has been with local servers, not the big network mothers like AOL, AT&T and the like. I'm currently using my local phone company (not AT&T) because they have an option even faster than RoadRunner. SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > Howdy! > [quoted text clipped - 20 lines] > > see I have no problem with my current screen name, nor have I made many > > postings here under Miztergeometry. >Malcolm writes that after a seizure, " the last thing I would think of >would be taking the time to meditate on the experience." Thanks Malcolm for [quoted text clipped - 4 lines] >and to take conscious actions. I hope some folks are able to take a few days >after their seizures and calmly meditate on what goes on inside them. Please tell me if you find anyone who can put the possibility of another seizure totally away (not just on the back burner) and feel safe and secure. I tried it the other day, by writing "When I had epilepsy..." but found that it doesn't work. There is no 'safe and secure'. Even though I'm hoping to cut out my meds after going so long without a seizure, I realise I shall still be epileptic and it will exert an influence on my life and actions. I shall merely be an epileptic currently off medication. It will still be on the back burner. SignatureMalcolm > Malcolm writes that after a seizure, " the last thing I would think of > would be taking the time to meditate on the experience." Thanks Malcolm for > sharing your instinctual reaction. I was not so much referring to the first > few minutes following the seizure during which we are becoming reoriented, but > to the next couple of days after we are in a safe and secure location. The > reason I made the request was because it **requires us to move past our **instincts > and to take **conscious actions**. I hope some folks are able to take a few days > after their seizures and calmly **meditate on what goes on **inside them**. The information I had, when I still had seizures (1998, 2002) was anecdotal from **others who had witnessed one. Several of the seizure types (Grand Mal? and Complex Partial (mine) ) by their natures can involve loss of awareness and memory of what happened during the seizure. One of the First Aid Charts might list the possible outcome (memories possible) following a seizure, by type. There may be more anecdotal research under efa.org via Howdy's or Julie's Idaho website to efa.org site. I don't remember :-< you posting any of the Breakthroughs you were able to make based on Your Meditations on the type of seizures you have, or the type of seizures you were able to control by those methods. Since the various *types of seizures have varying degrees of what someone Might remember when they 'come back' from depths of a seizure, someone with an Aura (simple partial) will have more chance recalling any images or experiences, than one of us with C.P. (Complex Partial) or Grand Mal type of seizures, where 'there's someone home, but the Lights aren't on' .... I think what Malcolm was reflecting above, was *not an 'instinctual reaction', but a real description of the follow-on of some of the seizure types represented here. For those types, parts above in your post I marked with **s become something that is not attainable with a 'memory slate' wiped **clean during the process of the seizure's progression. When a seizure type affects some of the basic Short and Longer-Term memory functions (the physical component), medicating on what is stored in there, becomes like meditating on what is stored in our Computer Memory Chip when the Power has been turned off.... ? It *was useful (but not technically Meditation), when I was first diagnosed but *not controlled, for me to determine what had happened or what *I* did just ahead of a seizure. During that time I was able to identify some Triggers that aggravated or provoked seizures before mine were 95% controlled with medications --> [Lemon or Bleach odours, Strong Lemon-based tastes, people arguing nearby in a Food Court while shopping, Hot or **Confined Spaces, Sudden changes from Light to extreme Dark (or I guess most Dark is 'extreme' :-< ), RAPID Flashing or Strobing lights, or Neon tubes that are failing. ] As each of the triggers was identified I could watch them either abate as medications were adjusted over year ~3-5, OR they left on their own as I adjusted to living with E. G. "gaross" <gaross@rogers.com> wrote in message news:wraTb.89511 *snip* > Since the various *types of seizures have varying degrees of what someone > Might remember when they 'come back' from depths of a seizure, someone with > an Aura (simple partial) will have more chance recalling any images or > experiences, than one of us with C.P. (Complex Partial) or Grand Mal type of > seizures, where 'there's someone home, but the Lights aren't on' .... Hi Gordon, Interesting to see what you write about memory loss with C.P. seizures. Funny, but after 30 years of C.P. seizures I didn't realise that I was supposed to be unable to remember what went on during them. :-) When I was having grand mal seizures 29 years ago, I had no memory of THEM afterwards. During my C.P.s I'm fully aware of my surroundings, sometimes if it's a mild seizure I can actually bring myself to speak during it and if I hear my wife crying that I'm squashing her hand and breaking bones, I can sometimes gradually manage to open my hand. Almost always I have 100% memory of the seizure. But when I'm not having a seizure my memory is sh.t. Par for the course I suppose. BTW, Gordon I've often wondered why you put those *'s all through your posts. Cheers, Darryl. > "gaross" <> wrote in message news:wraTb.89511 > *snip* > > Since the various *types of seizures have varying degrees of what someone > > Might remember when they 'come back' from depths of a seizure, someone with > > an Aura (simple partial) will have more chance recalling any images or > > experiences, than one of us with C.P. (Complex Partial) or Grand Mal type of > > seizures, where 'there's someone home, but the Lights aren't on' .... > [quoted text clipped - 8 lines] > gradually manage to open my hand. Almost always I have 100% memory of the > seizure. Did the Doctor tell you those were full Complex Partials, or could they be just Simple Partials (Aura) where you remain aware during the seizure? Someone else with C.P. might know. My original reply about C.P. starts here -> WHICH side is your seizure focus? (Which Temporal Lobe does your seizure start in, if you know?) My Right T.Lobe ones, I get an Aura, described elsewhere before as lemon taste or odour, OR a Deju Vu (Right side signal), and once I move from there -- possibly from there to what used to be called 'secondarily generalized'... *I only find out what happened from **witnesses. I don't recall anything or dangers that happened after onset starts. I've boarded buses I didn't belong on (had to go to Court to get That thrown out), wandered off the curb into Traffic without any awareness (woke up in Emerg. bandaged , 3 hours later -- hurray for Medic Alert for contacting my Family and computer file to see that I had a 'Seizure Disorder' listed), and had 8-10 other 'witnessed' seizures, ending in Loss of Consciousness from 1993 to 1998. Those last ones were Either at Shopping Centres or home. It was among some of those that I started to realize that some of the Auras and Onsets were made worse by Lemon Cleaners producing an aura, rather than the Rt. T.Lobe onset producing the aura (Deja Vu with lemon taste or odour). As I got closer to a Medications balance that worked, Frequency of the seizures decreased from a 'target' of 2-3 a *month (based on initial MRIs / assessments in 1993), to 2-3 a Quarter, to a Year, to none now since June 1998. I ALSO had destroyed memory throughout the 1980s from Encephalitis I had in 1979 that damaged part of my Right Temporal Lobe (that's how I know where the damage was in my case, and where the szr. focus is now). The T.lobes are the short term memory buffer for new learning before it gets discarded or moved to longer term storage in the brain. Throughout 1980 to ~1986, I could repeatedly read a paragraph without being able to recall for you what I had just read... Makes getting through a book or an article a chore when you get to the end of a page and realize you don't have any idea what was just read. Do you start Over? or go on to page 38 (from 37) and hope that you'll pick up the details from the context? e.g. Bottom- your first sentence- how do you know that your Memory isn't related to damage to some part that is also by the way triggering any seizures you're having? If your left or right Temporal Lobes are where any damage is, that would affect short to medium term memory functions like what you describe. (Howdy and Julie have websites that point to the U.S. Ep. Foundation of America (efa.org) that has more detail on which symptoms or auras might appear depending on where the internal damage might be. Julie's Idaho First Aid for Seizures chart summarizes about 4? of the basic seizure types, First Aid for each but **ALSO* what the auras are or feelings the patient might get at onset. Although that one doesn't split up aura differences between left and right Temporal lobe seizures (now called Complex Partial seizures on some of the newer sites), the efa. org site has articles I found at one time that goes into more detail . **IF you get a sour or lemony taste or odour ahead of a seizure, you could try Google search of 'seizures & sour taste & aura' or without the aura. If you get an Eggy, Foul or Acrid taste or aura ahead of a seizure, you could similarly search out Acrid Aura & Seizures & ?? to try locate some articles that might include more detail. Since you've been having seizures so long, you might get Auras that predict Onset, and not realize that those are often distinct and predict a particular area of onset. If that's the case, you might find some of those searches useful. **I did at the time, since I got the Taste (oh no) or the Odour and the feeling of foreboding and didn't *realize (for the first 18 months) that THOSE were an Aura and a predictor that a seizure had already begun. Later it became an excellent predictor and advisory to go lie down, or move out of traffic or out of a crowded store and find something cool to drink (*if there's time) or to Lie Down where someone might not call an Ambulance, thinking I've had a Stroke or Heart Attack. Most of the seizures near the Full Control point, I merely needed 10-15 minutes of cool air, a sit down, and the sensation would often pass and I could continue. There's a verbose rendition of the terms I refer to and what my type of C.P. seizure looks and feels like, and how I've managed (so far) to not have another seizure since June 1998. / cont'd below/ I like *'s better than the / ' s. > But when I'm not having a seizure my memory is sh.t. Par for the course I > suppose. > > BTW, Gordon I've often wondered why you put those *'s all through your > posts. What, **these ones? I usually leave all or most of a post intact (for my own use and memory later), and since I don't know which key initiates italics, I will either mark my or a sender's comments, where I want to **emphasize something. Alternately, If I break into mid-post of a person's previous mail, I found even if I leave a blank line, that I don't necessarily see where I'm inserting additions as I go, so I mark start of an insert with **s. (The reader doesn't insert the new > and >> until after the mail is sent, so it's not displayed during composition. BUT THEN, that's off topic and the O.T. police will show up if I extend that. You'd think they would have swooped onto the misspelled * labelling * in the subject line, but NO... they have to screen for topic contents instead.. ) / > Cheers, > Darryl. > > "gaross" <> wrote in message news:wraTb.89511 > > *snip* [quoted text clipped - 119 lines] > > Cheers, > > Darryl. Hiya, Gordon you crack me up, but thankyou for explaining it to me. BTW I'm the one from NZ. Here we prefer to use ~~~^^^~~~'s...like my EEG instead of *'s. :-) Also BTW my epilepsy is from right frontal temporal lobe damage caused by viral encephalitis when I was a child. (Sound familiar????) and yes my neuro says that my seizures are CP's. They were GM when I was first diagnosed, but reduced to CP when I was put on meds. Cheers Darryl Perhaps it will forever remain a mystery how these things work, but suddenly my screen names "Timmco" and "UnknownOrigen" have renewed their access to alt.support.epilepsy. Thanks to the gods or whomever. > Perhaps it will forever remain a mystery how these things work, but suddenly my > screen names "Timmco" and "UnknownOrigen" have renewed their access to > alt.support.epilepsy. Thanks to the gods or whomever. and just like that? without even an apology to the other people who also come here for support? for the nasty accusations which were probably a problem with that garbage AOL that you use that has been causing many problems like that for many people? and then you admittedly didn't even contact AOL to find out. Thanks for nothing! Bob Depending how long ago you were having problems, There WAS an expected DENIAL OF SERVICE attack due during the U.S. Football game. (I'm going back to watch rest of 2nd half in a minute.) If you get a chance later, you could try Resend any posts that failed earlier and see if it's aol overload like Bob suggested. I THINK AOL is one of the news sites who are broadcasting the Football LIVE, so you might have been bumped down the Queue by 'men in tights' being broadcast to the Middle East !! Another 'geek thing' I thought of later, I tried to reply to someone a few times off the group and it said 'you're sending in HTML and most newsgroups post in Plain Text, do you want to send this anyway. I clicked Yes, but hadn't purposely chosen HTML. So I wondered IF some of your posts you might be trying to Tx in HTML and AOL or ?? can't handle the switching properly. If that was you, someone here can maybe tell you how to change post mode back to Plain text OR at least Plain text AND HTML, so that general readers can read it.... Strange, if you type fast, plain text can come out as Palin Text !! Monty Python strikes again. G. > Perhaps it will forever remain a mystery how these things work, but suddenly my > screen names "Timmco" and "UnknownOrigen" have renewed their access to > alt.support.epilepsy. Thanks to the gods or whomever. > > > Hi Gordon, > > > Interesting to see what you write about memory loss with C.P. seizures. [quoted text clipped - 11 lines] > the > > > seizure. ******* > > There's a verbose rendition of the terms I refer to and what my type of > > C.P. seizure looks and feels like, and how I've managed (so far) to not have > > another seizure since June 1998. / cont'd below/ I like *'s better than the / ' s. > > > But when I'm not having a seizure my memory is sh.t. Par for the course I > > > suppose. > > > [quoted text clipped - 6 lines] > > **emphasize something. > > (The reader doesn't insert the new > and >> until after the mail is sent, > > so it's not displayed during composition. BUT THEN, that's off topic and > > the O.T. police will show up if I extend that. You'd think they would have > > swooped onto the misspelled * labelling * in the subject line, but NO... > > they have to screen for topic contents instead.. ) / [quoted text clipped - 7 lines] > :-) >*** Well at least they don't look like ---------- !! Then there's Really no one home !! :-< There IS a football game going on right now. (I just watched the half time and going back to it.) THAT MIGHT be overloading the internet if people are watching it online, PLUS some of the worms (I just got 2 more trapped at log on), might be part of a denial of service attack underway). MICROSOFT have offered a reward of a Quarter Million Dollars U.S. ($400,000 Canadian) for information on who started the worm that's doing the Denial of service, if you have any clues. > Also BTW my epilepsy is from right frontal temporal lobe damage caused by > viral encephalitis when I was a child. (Sound familiar????) and yes my neuro > says that my seizures are CP's. They were GM when I was first diagnosed, but > reduced to CP when I was put on meds. > Cheers > Darryl G.- If you do any Network searches for seizure types, you can search then on Complex Partial *or Temporal Lobe. The T.L. name was used in 1930s to ~1960s? so sometimes there are Medical Articles that still call them that. Somewhere in the UK? I also found an Encephalitis Support Group too about 1999. It wasn't very active at the time, but if enough of us find it (again), we might have some stuff we can share there specific to Enceph. damage that might not be of much interest to the rest here. OR they can click 'next'. It took me most of the 1980s from 1979 (onset) to about 1986 before some of my short term memory stuff started to rewire, reboot or whatever it did. The seizures showed up 6 years later in 1993, activated in part by a defective furnace and the monoxide it produced. But it was a very trying time from 93 to 97. I only post here to try help others who might be where I was in 1980s or after onset in 1993-7 period. There was a lot of 'why me?' and other stuff that I only had my Excellent Neuro to fall back on for support or info. on what was happening inside my head, and what other effects I might expect as possible side effects. He was the one who suggested I buy a computer (since I used to consult on buying computers before Bill had finished grade school). I suspect he thought I might find a support group, and build confidence using something that I had some background with. Maybe one day I will... G. Howdy M! TIME your seizures?? Sure wish I could do that! SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > >Becoming realistic and acknowledging our conditions, and moving away from the > >self-pity complex is a great step. I would like to encourage folks to delve [quoted text clipped - 18 lines] > We are all different. I get the feeling that my seizures were very > different from yours. >I'm not in denial. I have a serious neurological disorder and have seizures, >both simple & complex partials, but why would this be called "epilepsy". It [quoted text clipped - 4 lines] > >Bob Thanks Bob for your attempts at consistency. In that vein, I vote that my grand mals be labeled "complex wholes." > >I'm not in denial. I have a serious neurological disorder and have seizures, > >both simple & complex partials, but why would this be called "epilepsy". It [quoted text clipped - 7 lines] > Thanks Bob for your attempts at consistency. In that vein, I vote that my > grand mals be labeled "complex wholes." If that were to be a term that was used by the medical profession to describe grand mals and was used consistently and understood by all, then no problem. Bob >"complex wholes." > >If that were to be a term that was used by the medical profession to describe >grand mals and was used consistently and understood by all, then no problem. I guess our "doctor worship" confines us to conforming to their group insanity. The Pope had a big dose of "astronomer worship" when Galileo rocked the boat and met his fortune. Tim > >"complex wholes." > > > >If that were to be a term that was used by the medical profession to describe > >grand mals and was used consistently and understood by all, then no problem. > > I guess our "doctor worship" confines us to conforming to their group insanity. For some strange reason, I don't see a carpenter when I have a toothache nor do I take my car to a plumber for a tuneup. Then again, each of those 2 trades I mentioned have their own terminolgy and that terminology in each given case enables members of those trades to communicate in a mutually understandable way. Why should medicine be any different? > The Pope had a big dose of "astronomer worship" when Galileo rocked the boat > and met his fortune. I guess I must be dense, because I don't see the connection between that and our current discussion. Care to unconfuse me? > Tim Looks like your accounts are all working today. Bob > >"complex wholes." > >If that were to be a term that was used by the medical profession to describe [quoted text clipped - 4 lines] > and met his fortune. > Tim If I'm wheeled into Emerg. unconscious, I only care that the Medics know what they're talking about and can communicate the condition and provide effective treatment. I don't care much about what someone standing outside, waiting for a bus, would call it. They're not the Professionals who I depend on for treatment. I guess I don't really understand a long thread developing over what the Medics call a condition so they can communicate with each other. Hand me that 'club thing' so I can whack 'these pointy alloys of steel' into the wall willya ? G. > >"complex wholes." > > [quoted text clipped - 6 lines] > > Tim For God's sake Tim, build a bridge and get over it. >TIMMCO wrote: > [quoted text clipped - 14 lines] > >Bob I think you have a point Bob, in that when it was first defined, epilepsy meant tonic clonic seizures. As medicine advanced, it discovered other behaviours which also resulted from the propagation of signals and they therefore they fell under the same name. Now that we know so much more (or the docs claim they do, anyway) maybe the time has come to branch away from the umbrella term and deal with auras and complex partials and tonic clonics separately. Many years ago, people were called mad. As we learned more about psychiatry, we divided 'mad' up into different areas, so that the term no longer has any medical meaning. Have we reached the same point for epilepsy? SignatureMalcolm > >TIMMCO wrote: > > [quoted text clipped - 19 lines] > discovered other behaviours which also resulted from the propagation of > signals and they therefore they fell under the same name. It's just that having gotten hit cold with that term a number of years ago, I wasn't able to understand. I had known any number of people with "epilepsy" (grand mals) and knew that I didn't have that. An explanatory buildup would have been in order before hitting me with the term. > Now that we know so much more (or the docs claim they do, anyway) maybe > the time has come to branch away from the umbrella term It's a bit too late for that in my opinion. > and deal with > auras and complex partials and tonic clonics separately. Even they have vague definitions. My simple partial seizures are much different than what many others describe here just as my complex partial seizures are very much different than what some others have described as their complex partials. > Many years ago, > people were called mad. As we learned more about psychiatry, we divided > 'mad' up into different areas, so that the term no longer has any > medical meaning. > > Have we reached the same point for epilepsy? "It's all just seizure activity" said my doctor<g> when I pressed him for some definitions. I guess a layperson like myself wouldn't understand. Bob >"It's all just seizure activity" said my doctor when I pressed him for >some definitions. What an absolute breath of fresh air to read those words Bob. I feel like I have crossed a bridge and that the whole meaning of this subject has flowered. I worship your doctor's frank labeling. Thanks for the revelation. Tim > >"It's all just seizure activity" said my doctor when I pressed him for > >some definitions. [quoted text clipped - 3 lines] > > I worship your doctor's frank labeling. Whatever "seizure activity" might be. Perhaps I should have asked further questions as to what was a "seizure"? & what in the $%#@ is "seizure activity"? > Thanks for the revelation. You're velcome & glad you understood it. > Tim Bob rather than terminology used for seizure activity i think the multitude of generic names used to describe the same drug in different areas is more of a problem. half the time you wouldn't know what your taking. pablo > >"It's all just seizure activity" said my doctor when I pressed him for > >some definitions. [quoted text clipped - 7 lines] > > Tim >rather than terminology used for seizure activity i think the multitude of >generic names used to describe the same drug in different areas is more of a >problem. half the time you wouldn't know what your taking. >pablo Thanks for the insight Pablo. Could you give a few examples and possible dangers? Thanks, Tim > >rather than terminology used for seizure activity i think the multitude of > >generic names used to describe the same drug in different areas is more of a [quoted text clipped - 4 lines] > dangers? > Thanks, Tim well sodium valproate is called epilim in aussie, but i believe (and correct me if i'm wrong) it is called depacon in u.s.a. pablo Howdy M! The numbers do not indicate anything except a time line. Each one is a level of insight, not necessarily achievement. That doesn't mean that once I got to #7 I couldn't be a #3 the next day. Don't know whether I made that clear or not but there it is! SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > >This is Darryl, I'm the one with E. Patsy is just my major support in > >life....also happens to be my wife. [quoted text clipped - 31 lines] > or who feel the way I do, then I will know I'm not alone. Even after 27 > years of E, I need some support. Dave ©¿©¬ <dave@_nospam_howdydave.com> wrote >Howdy M! > >The numbers do not indicate anything except a time line. Each one is a level >of insight, not necessarily achievement. That doesn't mean that once I got >to #7 I couldn't be a #3 the next day. In which case my time line looks like an EEG trace :( >Don't know whether I made that clear or not but there it is! I'm trying to think how it could be done to remove a value implication, but I think the only method is to un-label them completely, ie no number, letter. Even a word is *likely* to have a value connotation, but is maybe the best if you smother it in pseudo-medical jargon. After all, a temporal lobe seizure is no worse than an occipital lobe seizure? SignatureMalcolm LMAO @ Dave, you twit. :-) Good point however. Darryl. > Howdy TIMMCO! > [quoted text clipped - 82 lines] > from the > > inner depths of our humanity. > Howdy! > [quoted text clipped - 4 lines] > knowledge on the diagnostic proceedings and medical knowledge of my > PHYSICIANS! Dave, if you think people here are doubting their physicians you should look on the breast cancer support ng. > Meaning... hummm... "What is the MEANING of the sky being blue?", "What i |
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