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Medical Forum / Diseases and Disorders / Epilepsy / February 2004Negative about Seizures
I am wondering why folks are so negative about their seizures. I experience the danger of banging my head, but I do generally have the aura to warn me to get down. (I don't drive) I realize there is the social stigma of acting out of control and being a burden on others who do not realize that in a few minutes everything will be back to normal. I do appreciate the after effects where new perspectives are discovered on old subjects. There seems to be an assumption here that seizures are innately bad things to experience. I would be most appreciative if folks would calmly and reasonably indicate why they hold such negative views about their seizures. Many thanks, Tim Well, a seizure hurts!! Would you think I was negative if I complained about being run over by a truck? That is how I have felt after a seizure. On the other hand, I don't think I am negative about having epilepsy or having a seizure disorder. I do appreciate that I have figured out what triggers my seizures so I can remain seizure free after so many years. I also get a warning before a tonic clonic seizure so I can get to a safe place. I have learned from the mistakes we have made (dislocated shoulder when my hubby was helping me - now we know not to hold or restrain, crashing to the toilet head first - now if I need to vomit I stay in bed and bring a bowl). I feel I am positive when I have the opportunity to talk to others who are coping with this in their family. One example is a man who I see once in a while at the attorney's office where I work on a temporary basis. The UPS man has a son who was recently diagnosed with epilepsy. Ever since I overheard him talking to a friend and then I told him I have epilepsy, he greets me by name and lets me know how his son is doing. He isn't gloomy about it, he is excited that he is getting an understanding and that things are getting better. That's my experience, Tim. And good topic BTW. Take care, Julie > I am wondering why folks are so negative about their seizures. I > experience the danger of banging my head, but I do generally [quoted text clipped - 8 lines] > calmly and reasonably indicate why they hold such > negative views about their seizures. Many thanks, Tim >There seems to be an assumption here that seizures are innately >bad things to experience. I would be most appreciative if folks would >calmly and reasonably indicate why they hold such >negative views about their seizures. Many thanks, Tim If I still had epilepsy, I would say "Come and sit inside my brain during a CPS and you'll see why." Luckily, I don't have that option now, but I can still tell you that some people's CPS affect the emotional part of the brain as well as other functions. Having the neurones of your 'Fear' centre triggered into convulsive spasms is not fun. Next time you see someone having a tonic/clonic seizure, imagine the same thing occurring in your emotional centres whilst you are *still aware* and you will get some idea of what it is like. Do you think that you have experienced all the emotions of which your mind is capable? The answer should be "No" because during a CPS it is possible to experience feelings which you have never met before and therefore cannot describe. There are no words in my vocabulary for such feelings - an excellent example of 'trying to explain blue to a blind man'. So I'm sorry, but I did not enjoy my seizures or look forward to the next one with relish. But I agree that a lot of my dislike of being epileptic came from the social side, the restrictions, reactions and assumptions, and from the damage which being epileptic did to my mind. The only good thing epilepsy did for me was that it brought me to a newsgroup where people could understand what I was talking about. If you enjoy your seizures, please stop taking the tablets.  SignatureMalcolm Thank you Julie and Malcolm for your thoughtful replies. Malcolm wrote "If you enjoy your seizures, please stop taking the tablets." My first seizure occurred 12 years ago, at the age of 42, shortly after the death of my younger brother who had been the family member to whom I felt the closest. Everyone said I needed to start taking some pills, however my experience with the seizure episodes was so spiritual that I felt it out of my human realm to try to "control" them. I have taken Dilantin only for a few brief periods when social forces were to difficult to withstand. I have taken no medications for three years and generally have a seizure every month or so. Malcolm, your remarks about the dark emotions that get stirred up by seizures is very interesting. I wonder if anything more can be said to describe the kinds of emotions you might be referring to. And I am not sure what CPS means. Julie - you made two statements which most interested me. First you said "Well, a seizure hurts!! Would you think I was negative if I complained about being run over by a truck?" Could you describe the source of the pain? Is it from having fallen down and bruised yourself or something else? Secondly, you say Julie, "I do appreciate that I have figured out what triggers my seizures so I can remain seizure free after so many years." Would you be so kind as to share with the rest of us a bit of your methodology so that we might benefit from your laudable efforts? Again, Malcolm and Julie, thanks for sharing your thoughts. CPS refers to Complex Partial Seizures, and I, like Malcolm, have seizures that involve emotions. The emotions are much more intense than anything I have ever felt in regular life. It is very intense emotional pain. The closest I can come to describe it is fear with a little anger thrown in, and confusion. But it is so much worse than that. It is the most terrible thing I have ever experienced in my entire life. I don't know if it is part of the seizures or not but I hurt myself I think in an effort to take the focus off the emotional pain which is way worse than physical pain. I had one yesterday and wound up with a bruised stomach and a tender lump on my head. I didn't know for years that these were seizures and had gotten to the point where I was contemplating suicide rather than have another one. The only thing I can imagine that would happen in real life that would come close to these kinds of emotions would maybe be watching your whole family being killed by an axe murderer and knowing your next. I also scream like I am about to be murdered during them, or sometimes I have this moaning too... On the other hand I believe that I have other kinds of little seizures where I find myself in another room with a feeling that I had moved very fast or jumping kind of. And another where I kind of thrash my head around. These don't really bother me. Sasha > Thank you Julie and Malcolm for your thoughtful replies. Malcolm wrote "If you > enjoy your seizures, please stop taking the tablets." My first seizure [quoted text clipped - 21 lines] > > Again, Malcolm and Julie, thanks for sharing your thoughts. >I, like Malcolm have seizures >that involve emotions. The emotions are much more intense than anything I [quoted text clipped - 18 lines] > >Sasha I am very grateful that some people have been willing to share about the painful, and often frightening emotions associated with their seizures. It is probably quite painful just to recall, much less write about such experiences. However, if I can take the exploration a step further, may I ask if the painful emotions are evoked during the course of the actual seizure or do they arise in the aftermath? Do these emotions relate to actual life experiences? Are they emotions that have been buried? Has anyone been able to work with these emotions to resolve any life issues? Personally, I was a person whose first experiences with life were quite painful and I was left with the impression that humans were not friendly creatures. My warm and loving emotional linkages were with animals, particularly dogs. (young children as well) In fact, this was a faulty impression, formed primarily by my association with my family. I built some very strong walls inside to keep myself distant from the pain I could suffer from other people. This may sound whacko, but I have felt that my seizures have been some kind of God's psychotherapy. It has been a long journey of 13 years with grand mal seizures, but finally I find my interior walls breaking down and I am experiencing that people can be very friendly and loving creatures and I don't need to be so afraid any more. I wonder if anyone can associate with my experience. Thanks, and I hope I have not sounded too wierd. > >I, like Malcolm have seizures > >that involve emotions. The emotions are much more intense than anything I [quoted text clipped - 25 lines] > emotions are evoked during the course of the actual seizure or do they arise in > the aftermath? They come at the beginning. It hits me like a wave. I can see it coming for a couple seconds and then it hits me and I am overwhelmed. In the aftermath I am just glad it is over and I have this feeling like I have been broken somehow. I don't know how else to describe the feeling except just broken. Do these emotions relate to actual life experiences? No, not really, usually. Sometimes they happen when I am perfectly fine. Other times they have happened when I was extremely anxious, or when there is a sudden stressor. The last time I was having obsessive-compulsive disorder symptoms and then it happened. I have read that ocd is a neurological condition instead of just a psychiatric condition, and some people with seizures have it too, so it is not too surprising that I had both problems one before the other. But it is not like responding emotionally to an event. Are they > emotions that have been buried? No. I have had years of psychotherapy and psychiatric treatment and they could not figure out what these "episodes" were. They thought it sounded like post traumatic stress, but I have never experienced trauma. I did have a bad time growing up which I don't feel like going into in depth. I was plagued with depression, anxiety, ocd and possibly mild psychosis, and parental problems, other health problems, and kids making fun of me, but no actual trauma. I have worked through this in therapy, but these episodes continued. I am just now found out these "episodes" were seizures. It has nothing to do with anything in my life except for the seizures themselves making life difficult for me. The tech who did my testing said that often when the seizures are treated, the other problems (like depression,ocd) can clear up too. It could be that the seizures are actually the root of my problems. Has anyone been able to work with these > emotions to resolve any life issues? I am no expert, but I think you have the wrong idea. Just because seizures can involve emotions, doesn't mean that they are regular emotions that one gets on a regular basis. I don't know how to explain this. It is just the brain malfunctioning and not regular emotions you get in reaction to an event. It is just the brain malfunctioning and causing a person to feel really intense emotions that have nothing to do with anything in life. Maybe someone else can explain this better. > Personally, I was a person whose first experiences with life were quite painful > and I was left with the impression that humans were not friendly creatures. My [quoted text clipped - 8 lines] > need to be so afraid any more. I wonder if anyone can associate with my > experience. Thanks, and I hope I have not sounded too wierd. I'm glad you are feeling better about people. I am moving in that direction too and have had similar feelings. Sasha >> I am very grateful that some people have been willing to share about >>the painful, and often frightening emotions associated with their >>seizures. >>It is probably quite painful just to recall, much less write about >>such experiences. It is good to get it off my chest, hence the poems. >> However, if I can take the exploration a step further, may I ask if >>the painful emotions are evoked during the course of the actual >>seizure or do they arise in the aftermath? I can say little but echo Sasha's reply. A lot of people seem to think that epilepsy is a condition lasting as long as the seizure and then you can get on with your life the rest of the time. I have not found this - epilepsy is a 24/7 condition which took me into social withdrawal and a load of psych problems (self-injury, suicide attempts, zero self-esteem, depression and psychosis). I spent many years hanging about on the Social-phobia support group, but last year moved to alt.support.autistics because I'd found that the Asperger's group there could understand me so much more clearly (and vice-versa). That is a measure of the scale of the effect which epilepsy has had upon me. I think I've said somewhere before, your computer is probably surge- protected. The brain is not, and seizures which produce a massive overactivity in emotional areas during a CPS are bound to have an effect upon the personality, especially when emotions are produced for which there are no words. These emotions themselves do *not* spill over into the time between seizures - the reaction to their trauma does. The trick is to accept these changes as part of myself, rather than resent them. Regards, SignatureMalcolm http://www.mtdomain.demon.co.uk > >I, like Malcolm have seizures > >that involve emotions. The emotions are much more intense than anything I [quoted text clipped - 27 lines] > emotions that have been buried? Has anyone been able to work with these > emotions to resolve any life issues? Can I pop in here to explain what my experiences with the emotional part, the fear component, of simple and complex partial seizures was like for me. Before I was diagnosed about 14 years ago, I was sure I was going nuts or someone was slipping illegal drugs to me because that is how goofy I felt and because I couldn't figure out what else could be the reason for my feelings. I was diagnosed after many, many years of having progressively worsening problems, which really became bad a year or two before I was diagnosed, and those final couple of years before the diagnosis I had the fear component all the time (but I was having a lot of seizures), but there were times it was even worse. I thought our food or water was contaminated because there was no other rational reason for the way I felt, so I avoided eating (I lost a lot of weight) and even drinking our well water. My startle response was excessive (to noise and visual things), very hypersensitive. If a bird flew past the window, I would just about jump out of my skin. That kind of scared me because I was afraid I would accidentally punch someone in the nose if they came up from behind me (I never did hit out at anyone though). I never felt safe and thought people were out to get me. One night we were out to dinner with friends and on the way home I had my second seizure of the evening and thank goodness I was sitting between two people in the car because otherwise I would have jumped out the door (because I thought they had drugged my dinner somehow and I needed to get away from them). I won't describe the next incident, it's kind of boring, but it and the previous incident made me realize I HAD to try again getting medical help because I felt I was a danger to myself and others. When you live with that much fear, day in and day out, you do things to try to protect yourself. I avoided people (it didn't matter if they were kids either) and actually planned on ways to defend myself (like sleeping with a pair of scissors), which was absolutely nutty and dangerous. Like I said, I avoided food and beverages or anything I thought was a potential source of these strange feelings. I don't know or understand how people can walk around all day, every day feeling scared or terrified. Barb > Personally, I was a person whose first experiences with life were quite painful > and I was left with the impression that humans were not friendly creatures. My [quoted text clipped - 8 lines] > need to be so afraid any more. I wonder if anyone can associate with my > experience. Thanks, and I hope I have not sounded too wierd. > Can I pop in here to explain what my experiences with the emotional part, the fear > component, of simple and complex partial seizures was like for me. Before I was > diagnosed about 14 years ago, I was sure I was going nuts or someone was slipping > illegal drugs to me because that is how goofy I felt and because I couldn't figure > out what else could be the reason for my feelings. Yes, that's how I felt. I thought I was going mad but told myself I couldn't be because people who were going made didn't think that they were going mad. But I didn't convince myself. I'm sorry that your experience worsened - at the same time glad that mine was largely cured. Mary > > > > [quoted text clipped - 14 lines] > I'm sorry that your experience worsened - at the same time glad that mine > was largely cured. All those problems were before I was diagnosed 14 years ago. I'm doing great now. Hey, isn't it good to have comrades who've gone through the same thing? We're the only ones who really know what it feels like. Barb > Mary Howdy Barb! Have I found yet another person with my love of empathy, disdain of sympathy and hate of pity? SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > All those problems were before I was diagnosed 14 years ago. I'm doing great > now. Hey, isn't it good to have comrades who've gone through the same thing? > We're the only ones who really know what it feels like. > > Barb "Dave ©¿©¬" wrote: > Howdy Barb! > > Have I found yet another person with my love of empathy, disdain of sympathy > and hate of pity? Naw. I'm just feeling good right now. Wait until I go through a bad time and then you will see a attitude change. Barb > -- > Dave ©¿©¬ [quoted text clipped - 9 lines] > > > > Barb <snip> > experiences. However, if I can take the exploration a step further, may I > ask if the painful emotions are evoked during the course of the actual > seizure or do they arise in the aftermath? Do these emotions relate to > actual life experiences? Are they emotions that have been buried? Has > anyone been able to work with these emotions to resolve any life issues? <snip> You appear to have some interesting seizures. Are you concious during them then? Prior to a seizure I start with feelings of anxiety - probably a sensible emotion considering that I have a pretty good idea what's coming up! During the actual seizure I have no emotions whatever. I don't exist. Completely unconcious. The next that I know of it is that I am recovering, feeling as if I've just been "run over by a truck" - a bit of a cliche around here, but a pretty good description! I once sat on a carpark wall, feeling woozy, and woke up in an ambulance with an oxygen mask on. Nothing in between, and with a lot of aches and pains. (A few details were later filled in by witnesses). I, personally, can't really find much of great spiritual interest in situations like that. I'm too busy being confused, hurt and a rather embarrassed. SignatureMick http://www.nascom.info for Nascom & Gemini information Also at http://www.mixtel.co.uk where the collection started. Currently deserting M$ for linux... :-) Mick says post-seizure, "I'm too busy being confused, hurt and a rather embarrassed". Mick - I go with Howdy Dave on the embarrassment issue. Just cause the others are not among the one in a hundred with "epilepsy", and they use their resentment on you due to the power of majority status, I have a couple of words for the folks who do not understand that the greatest minds of all times have been epileptical: f.ck YOU! Hold your head high, Mick. My Goodness, you almost make this sound like a good thing. Something one should seek out even. Disease as a blessing. Kind of a whole new way to look at things. In sorta of a distorted abnormal way. Hey, let's go try this not bad, just different stuff on a cancer support group. Maybe they'll appreciate it even more. > My Goodness, you almost make this sound like a good thing. Something one > should seek out even. [quoted text clipped - 4 lines] > Hey, let's go try this not bad, just different stuff on a cancer support > group. Maybe they'll appreciate it even more. Dona, I'm a member of a cancer support group because I have cancer. Recently one of the other (and very wise) members, whose wife is dying of cancer, posted this: "This... is what cancer does for you: It gives you communities that you didn't have before, or ever thought you wanted to be part of, privileges you never thought you'd use, and friendships that are worth going into the lightening for. It can make wives love husbands more, husbands love wives more, children love their parents more, and parents love their children more. It intensifies, energizes and electrifies all of life, all around us, all the time." I reckon the same can be said of any other condition ... if we accept it. Mary >Thank you Julie and Malcolm for your thoughtful replies. Malcolm wrote "If you >enjoy your seizures, please stop taking the tablets." Actually, not a good idea unless you taper them off veerryy sloooowly or you make matters worse. >I have taken no medications for three years and generally have a seizure every >month or so. Malcolm, your remarks about the dark emotions that get stirred up >by seizures is very interesting. I wonder if anything more can be said to >describe the kinds of emotions you might be referring to. I always direct people to the poems on my website when they ask "What's a seizure like?". Try: http://www.mtdomain.demon.co.uk/CWS/Poems/mt51a.htm and http://www.mtdomain.demon.co.uk/CWS/Poems/mt51f.htm Beware slow loading pages! I *must* get round to updating that site (it hasn't changed much since I started, but at least you'd get some more morbid poems!). I never seem to have the time :( > And I am not sure what CPS means. Complex Partial Seizures (temporal lobe epilepsy), where sensation and consciousness is affected but not lost as it is in tonic/clonic seizures. There are many different types of CPS. SignatureMalcolm > Julie - you made two statements which most interested me. First you said > "Well, a seizure hurts!! Would you think I was negative if I complained > about being run over by a truck?" Could you describe the source of the pain? > Is it from having fallen down and bruised yourself or something else? I know I'm not Julie, but as far as the pain goes... The first time I experienced (or realized I was having) seizures was one day when I was hit with 3 TC seizures in 1 day. I did not fall down, I was in bed when when the first one hit, reclining in a chair when the 2nd one hit, and in hospital in a bed for the 3rd. The all-over body pain lasted weeks. The source, you ask? Well, using muscles not normally used, I suppose. Muscles I didn't know I had. The pain in my head was immense. I'm getting a headache just thinking about it. You don't have to get hit by a truck, fall down, or scald your hands in boiling water, [insert whatever accident] to feel the aftermath of a tonic clonic seizure. Lainie Well put, Lainie. Julie > > Julie - you made two statements which most interested me. First you said > > "Well, a seizure hurts!! Would you think I was negative if I complained [quoted text clipped - 14 lines] > a tonic clonic seizure. > Lainie you wonder what hurts about a seizure? you enjoy them( spiratually), are you for real how does it hurt? get real. Every single muscle is spasming involuntarily during a seizure, it makes you feel like youve been run over by a truck, your teeth chew up the insides of your mouth and tongue and they are all bloody and torn for a week or so, your brain is deprived of oxygen while you are seizing and that causes a headache so extreme I couldnt even begin to explain to anyone, yes...then comes the fact that you may fall into something and hurt yourself that way, bang your head repeatedly onto the floor, but your muscles still ache even if youve had a seizure safe and sound in you r bed. you need help. Hi Nomad - Thanks for your comments. You seem to be saying that I "need help" because my experience with regular grand mal seizures over the course of 13 years has not been the same as yours. I do not suffer from that all-body muscle pain that you describe, though there is an occasional headache. I am glad I asked the question regarding "negative about seizures" because the replies have educated me about the experience of others. Yet your hostile attitude towards me for not duplicating your particular pain seems unjustified. Take care, Tim You wrote to me: "you wonder what hurts about a seizure? you enjoy them ( spiritually), are you for real how does it hurt? get real. Every single muscle is spasming involuntarily during a seizure, it makes you feel like youve been run over by a truck, your teeth chew up the insides of your mouth and tongue and they are all bloody and torn for a week or so, your brain is deprived of oxygen while you are seizing and that causes a headache so extreme I couldnt even begin to explain to anyone, yes...then comes the fact that you may fall into something and hurt yourself that way, bang your head repeatedly onto the floor, but your muscles still ache even if youve had a seizure safe and sound in your bed. You need help." "Yet your hostile attitude towards me for not duplicating your particular pain seems unjustified." You come into a support group about a disease that has stripped our lives of a great deal of dignity and caused physical and emotional pain for both us and those we love, wanting to talk about how pretty it all is and how much we gain from it all, and you didn't expect hostility? You live in a nice, fussy world, don't you? Written by NOMAD205: you wonder what hurts about a seizure? you enjoy them( spiratually), are you for real how does it hurt? get real. Every single muscle is spasming involuntarily during a seizure, it makes you feel like youve been run over by a truck, your teeth chew up the insides of your mouth and tongue and they are all bloody and torn for a week or so, your brain is deprived of oxygen while you are seizing and that causes a headache so extreme I couldnt even begin to explain to anyone, yes...then comes the fact that you may fall into something and hurt yourself that way, bang your head repeatedly onto the floor, but your muscles still ache even if youve had a seizure safe and sound in you r bed. you need help. > "Yet your hostile attitude towards me for > not duplicating your particular pain seems unjustified." [quoted text clipped - 5 lines] > > You live in a nice, fussy world, don't you? Give the guy a break...OK I have to admit I felt a little hostile towards his attitude myself, but he came in here trying to find out about what other peoples experiences have been like. He expresses to us what his is like and I will admit that from his point of view it would be hard for him to see a down side...as we do. Maybe the subject could of been approached in a better way, but he was trying to get an understanding which is what we are all here for....are we not????? And Tim as you have no doubt seen the majority of us have seizures of a much less pleasant nature to your own. Some people do find it quite hard to live with and remember their embarrassing moments because of this. In no way does this lessen the experiences you have with epilepsy and I hope that you have been able to learn more about other peoples seizures and what it does to them, their lives and their loved ones....If nothing else this thread has made people sit up and take notice and has brought in a lot of response. I hope you have the answers you needed. Cheers Darryl and Patsy > "Yet your hostile attitude towards me for > not duplicating your particular pain seems unjustified." [quoted text clipped - 5 lines] > > You live in a nice, fussy world, don't you? I think that's an unjustified comment on what was said. Perhaps you've misunderstood ... Mary > Hello Tim > Julie - you made two statements which most interested me. First you said > "Well, a seizure hurts!! Would you think I was negative if I complained > about being run over by a truck?" Could you describe the source of the pain? > Is it from having fallen down and bruised yourself or something else? At times I have actually been injured (example - thinking I was about to throw up during the flu I kneeled before the toilet - my brain had other ideas beyond throwing up and I had a tonic clonic seizure. I ended up with my head and upper body wedged between the toilet and a wall. I slowly came out of my seizure and called my husband for help. This must have been a terrible image for him to see.) The "hurt" I was speaking about was actually how I feel before and after a seizure. Before the tonic clonic I can feel it coming on and I have intense fear because I have no control. After the seizure my muscles ache, I have an intense headache, I used to bite my tongue, I am exhausted. I tell people I feel like I've been run over by a truck. It takes a couple weeks to even be able to walk and talk like a "normal" person again. > Secondly, > you say Julie, "I do appreciate that I have figured out what > triggers my seizures so I can remain seizure free after so many years." Would > you be so kind as to share with the rest of us a bit of your methodology so > that we might benefit from your laudable efforts? First of all, if I feel like I need to rest, I rest. I don't push myself. I stay away from flashing lights, and try to minimize my stress. I continue to take my seizure medication every evening. I think the most important enlightenment for me has been the fact that MSG in foods makes me sick. I have irritable bowel syndrome (IBS) and I have had several seizures after an attack of IBS. Now that I know that I have IBS, I know to lay down and not get up when it hits me. The doctor has given me medication to stop the cramps, if it hits me in the middle of the night I ask my husband to get water and my medication -- I stay in bed (it may take about half an hour to stop). Also I realized how many foods there are that contain MSG. So I read all the labels now and ask questions at restaurants. We even have to keep an eye on the spices we buy. The other day I was about to make some homemade chili and my husband informed me that he didn't realize that the chili spice he bought had MSG. He bought me some soup the other day and thought for sure it didn't contain monosodium glutamate. But I read the label and found it listed in the middle of the list of ingredients. It is usually found at the end of the ingredients, so they fooled him. So, as you can see I am very careful about what I eat. My IBS has greatly improved, and I haven't had a tonic clonic seizure for 8 years, it will be 9 years this summer. Take care, Julie > Again, Malcolm and Julie, thanks for sharing your thoughts. Hi Julie: I too am very sensitive to MSG, and it pisses me off how many processed foods contain it or its relatives! Do you also find that hydrolyzed vegetable protein affects you in a similar way? Often foods that boast "no MSG" on the label will contain this instead, and for me it is just as bad. (snip) I think the most important enlightenment for me > has been the fact that MSG in foods makes me sick. I have irritable bowel syndrome > (IBS) and I have had several seizures after an attack of IBS. Now that I know [quoted text clipped - 16 lines] > > > Again, Malcolm and Julie, thanks for sharing your thoughts. i don't know what it's like elsewhere but in australia food additives have numbers and unless you have the code book you wouldn't know what sort of rubbish your ingesting. surely this isn't to help the consumer. pablo > Hi Julie: > I too am very sensitive to MSG, and it pisses me off how many processed > foods contain it or its relatives! Do you also find that hydrolyzed > vegetable protein affects you in a similar way? Often foods that boast "no > MSG" on the label will contain this instead, and for me it is just as bad. It's the same in New Zealand. The code for MSG is 621. Don't know about others though. Darryl. > i don't know what it's like elsewhere but in australia food additives have > numbers and unless you have the code book you wouldn't know what sort of [quoted text clipped - 5 lines] > > vegetable protein affects you in a similar way? Often foods that boast "no > > MSG" on the label will contain this instead, and for me it is just as bad. Howdy pablo! Is that what that: REG No: 649 is for on my jar of Vegemite? SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > i don't know what it's like elsewhere but in australia food additives have > numbers and unless you have the code book you wouldn't know what sort of [quoted text clipped - 5 lines] > > vegetable protein affects you in a similar way? Often foods that boast "no > > MSG" on the label will contain this instead, and for me it is just as bad. > Howdy pablo! > [quoted text clipped - 3 lines] > > is for on my jar of Vegemite? dammed if i know what it is? it might cream of someyungguy. pablo > > i don't know what it's like elsewhere but in australia food additives have > > numbers and unless you have the code book you wouldn't know what sort of [quoted text clipped - 7 lines] > > > MSG" on the label will contain this instead, and for me it is just as > bad. Howdy pablo! Guess that you lost me! That's the only number that I can find I the jar. I KNOW for a fact that my vegemite has more than one ingredient! SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > > Howdy pablo! > > [quoted text clipped - 19 lines] > > > > MSG" on the label will contain this instead, and for me it is just as > > bad. g'day dave maybe it means there's 649 ingredients in it and you have to guess what they are! pablo > Howdy pablo! > [quoted text clipped - 30 lines] > as > > > bad. I was upset that the food and drug administration here in the states didn't say MSG was forbidden, guess I should appreciate that they require ingredients be listed on all packaging. Hope things are going well for you down under. Julie > i don't know what it's like elsewhere but in australia food additives have > numbers and unless you have the code book you wouldn't know what sort of [quoted text clipped - 5 lines] > > vegetable protein affects you in a similar way? Often foods that boast "no > > MSG" on the label will contain this instead, and for me it is just as bad. Hey!!! I just told someone with a child to find one of your Posts to get your Idaho Website address. By now I should remember it, but I don't !! :-< If you have a minute before *I* look it up on my bookmarks can you list that one at least? (I didn't know if you have stuff now for Parents of Kids or not, but I suggested they mark the First aid chart and First aid in Water, as well as the link on to efa.org site. G.R. > I was upset that the food and drug administration here in the states didn't say > MSG was forbidden, guess I should appreciate that they require ingredients be [quoted text clipped - 12 lines] > > > vegetable protein affects you in a similar way? Often foods that boast "no > > > MSG" on the label will contain this instead, and for me it is just as bad. Hi Gordon, gotta hurry, but I'll leave my URL. Julie Walton, Volunteer Webmaster Epilepsy Foundation of Idaho http://www.epilepsyidaho.org > Hey!!! I just told someone with a child to find one of your Posts to get > your Idaho Website address. By now I should remember it, but I don't !! :-< [quoted text clipped - 25 lines] > > > > MSG" on the label will contain this instead, and for me it is just as > bad. Thanks! That was for 4-5 New people I posted to or wrote over the past ~2 weeks mentioning reading 'The Idaho Website' for information on First Aid (for others around us to read), Tips and Tricks for Safety while coping with seizures, and general information on seizures, other's experiences and links to efa. org and other sites. I hope you're able to get your fair share of rest. These are tough times sometimes caring for a parent, and we often forget our own health as we run on 'auto-pilot' doing what we 'need to do' to help them as we can. Stay well, we need you around here when you're done !! (too) :-< G.R. > Hi Gordon, gotta hurry, but I'll leave my URL. > Julie Walton, Volunteer Webmaster > Epilepsy Foundation of Idaho > http://www.epilepsyidaho.org > > gaross wrote:(Below was written after a post Julie did to Turbinado? without putting her www address at the end.) > > Hey!!! I just told someone with a child to find one of your Posts to get > > your Idaho Website address. By now I should remember it, but I don't !! [quoted text clipped - 4 lines] > > Water, as well as the link on to efa.org site. G.R. > > etc. Thanks for your concern, Gordon. The doctor has given my mom an increase in her medication. We took her for a long drive today and she seems to be a little better, not quite so paranoid. I know I need to take care of myself. I've been busy with new clients and will have my mother with me quite a bit in March. The good thing is I can work from home for much of my client work, updating websites. I realized that I haven't checked out alt.support.epilepsy for quite some time, hope you're all doing well. Did Pablo and Gordon eat up all the chocolates? I've been on a high protein, low carb diet, but I found some 0 carb chocolate bars that work for now. The weight is coming off and I'm feeling good. In a couple more months I should be able to go back to a semi normal diet, but I'll cut down on the amount of sugar in my diet. That should keep the doctor happy! Take care, Julie > Thanks! That was for 4-5 New people I posted to or wrote over the past > ~2 weeks mentioning reading 'The Idaho Website' for information on First Aid [quoted text clipped - 27 lines] > > > Water, as well as the link on to efa.org site. G.R. > > > etc. g'day julie, unfortunately us little people don't have too much pull with government departments, at least not as much as the big companies. i guess it pays to dump heaps of cash in the election funds of the pollies, then you can dump whatever poison you like into the food. things ain't too bad in my neck of the woods at the moment, hope things are ok your way too. pablo > I was upset that the food and drug administration here in the states didn't say > MSG was forbidden, guess I should appreciate that they require ingredients be [quoted text clipped - 8 lines] > > pablo > > "turbinado" <turbinadoN@SPAMtelus.net> wrote in message Canada has had Content Labelling for about 20 years now. If you or someone asked the Government to put the contents list on the Cans and Jars, and they thought it was important (as in Getting Elected or Preventing a Lawsuit), then manufacturers would comply. More than **40% (my guess, might be higher) of products in cans or jars sold in Canada come from the U.S. and already have to comply to get in here. I've seen products in cans or jars from *Europe, that have FAR more detail on milligrams per serving or per 100ml of xyz and percent of contents that are of unknown origin or May contain xxx product. As more crossborder trade expands you might see More Labelling even in countries that don't have their own rules, but it would be better if they decided to conform to what's already been put in place since the 1980s? or earlier. The only places you might run into trouble with additives might be buying at the 'Bulk Bins' in stores or from some of the independent stores here. I sometimes see posts here about avoiding 'toxic drugs', Medical Co. subsidized pills, and other stuff, then they'll go to an 'Off Brand' healthfood store where they have NO idea whether those Wheat grains came in that sealed paper bag or the back of an Open Truck from the farm. But hey, it SAYS it's healthfood so it must be right. And who would have ever thought people would pay 3 dollars a Litre for 'pure spring' water to avoid Chlorine and Fluoride, but they don't know where the Farm was where they picked up that 'pure spring' water to bottle? Hey it's from France, it must be good for you.... And wrt. the U.S.-- while there's an Election in the works is the Best time to get promises in **Writing from various candidates, so that when it's over the lobby groups, Ep. Foundations or ?? can go to them during their first 3 months and show them what they signed. Not much notice is paid by some Governments in the Middle of their term in office. Hand me that Chocolate willya? At least it's sealed when it arrives. :-< G. P.S. Products with MSG for one, have to be labelled here, plus any poly fluoro chemical additives that might be present too. I think those followed input to the Government from the Medical Community about the no. of people who wouldn't need to use the Health System (=$$$) as much, if they were kept healthy at Front End of the Food Cycle. / > g'day julie, > unfortunately us little people don't have too much pull with government [quoted text clipped - 7 lines] > didn't say > > MSG was forbidden, guess I should appreciate that they require ingredients be > > listed on all packaging. > > > > Hope things are going well for you down under. > > Julie > > > > > i don't know what it's like elsewhere but in australia food additives have > > > numbers and unless you have the code book you wouldn't know what sort of > > > rubbish your ingesting. surely this isn't to help the consumer. > > > pablo > > > "turbinado" <turbinadoN@SPAMtelus.net> wrote in message g'day gr i never look at the ingredients on a chocolate packet, it never lasts long enough for that :-) MMM. pablo > Canada has had Content Labelling for about 20 years now. If you or > someone asked the Government to put the contents list on the Cans and Jars, [quoted text clipped - 61 lines] > > > > pablo > > > > "turbinado" <turbinadoN@SPAMtelus.net> wrote in message Hi Pablo, well I've just spent two days working hard and running across town to my sisters home to work out problems with my mom. Tonight we think she may have taken a double dose of her medication. She has dementia and obsessive compulsive disorder, so it is difficult for her to accept our loving care. But we keep trying. I called the doctor on call and took her to get her blood pressure checked. She seemed to be in a better mood when I left. Then I checked my email. Good news is my domain server is doing a better job of keeping spam out of my business and webmaster email accounts. Bad news is we seem to have several strange postings here on our "support group". Do you think some people need to get a life and let the rest of us get on with supporting those of us who are trying to cope with our situation! Gotta go, hubby says it's 11:00 and I need to go to sleep. He said my sense of priorities are wack ;-) Not sure what that meant, maybe he was speaking aussie. Take care, Julie > g'day julie, > unfortunately us little people don't have too much pull with government [quoted text clipped - 19 lines] > > > pablo > > > "turbinado" <turbinadoN@SPAMtelus.net> wrote in message > Hi Pablo, well I've just spent two days working hard and running across town to > my sisters home to work out problems with my mom. Tonight we think she may have [quoted text clipped - 14 lines] > Take care, > Julie g'day jules, shame about your mum, i hope you have better fortune in the future with her. my father isn't quite what he used to be after his stroke and so is a little forgetful. one morning recently while he and mum were up for a visit mum put his pills out for him to take which he did then he went to the toilet but on his way back he saw another pile of pills and he took those as well. unfortunately they were mums so he ended up dosing himself double on some medications also an anti-depressant and hormone replacement. needless to say he ended up a bit wonky and mum was very worried. now he has one of those weekly pill minders. i'm wondering what the HRT did to his system. pablo Hi Pablo. We are finally getting things worked out between all the family trying to help my mom. We hired my daughter-in-law to come in 1/2 a day once a week. She has a medical back ground so that will help. It helps to have a little relief from the rest of the family and my mom really likes my daughter-in-law. I can tell that her short term memory is really going. Today she insisted it was Sunday, when my brother-in-law informed her that it was Saturday and showed her the newspaper and the weather channel on TV with the date, she didn't believe him and called her friend. When her friend told her it was Saturday, she believed her. I wish we could get her to trust the family. Live goes on. Take care, Julie > > Hi Pablo, well I've just spent two days working hard and running across > town to [quoted text clipped - 36 lines] > i'm wondering what the HRT did to his system. > pablo I am thankful that here in Canada, they use the names of the additives. Once in awhile we get foods imported from Europe where they use the number system and it is very frustrating. > i don't know what it's like elsewhere but in australia food additives have > numbers and unless you have the code book you wouldn't know what sort of [quoted text clipped - 5 lines] > > vegetable protein affects you in a similar way? Often foods that boast "no > > MSG" on the label will contain this instead, and for me it is just as bad. As far as I know this is not a problem for me. But to be honest I don't buy very much packaged food any more. You are right, it is ridiculous how many things have MSG in them. I went to a superbowl part at my brother-in-law's house. They wanted me to bring a veggie tray and make a veggie dip that everyone likes (except me) sour cream with Ranch. Than ranch package has MSG. So I made it for the group, but I stayed away from it. Interesting, two people in the group got sick. I bet it was the MSG. Take care, Julie > Hi Julie: > I too am very sensitive to MSG, and it pisses me off how many processed [quoted text clipped - 38 lines] > > > > > Again, Malcolm and Julie, thanks for sharing your thoughts. TIMMCO <timmco@aol.com> wrote in article <20040123172659.22719.00000630@mb-m18.aol.com>... <snip> Sorry if I've restarted a dead thread, but I've not had access for a while and thought I would add to this, even though I do sniff a bit troll around the edges . > Julie - you made two statements which most interested me. First you said > "Well, a seizure hurts!! Would you think I was negative if I complained > about being run over by a truck?" Could you describe the source of the pain? > Is it from having fallen down and bruised yourself or something else? Physically every single muscle aches from hours to days (occasionally going into weeks) due to all the stresses they are put under. My tongue is a mess where I bite it; it takes a couple of weeks before I can eat without worrying whether it will hurt. The 1st few days are a nightmare as everything hurts, but I need to eat. Then there are the external injuries from objects in the way; I have a scar under my eye where I fell onto a beer tap. It caught my eye socket a glancing blow and obviously I went off to one side, had I gone the other way the best outcome would have been a lost eye! I still have a scar on my elbow where I ran in front of and got hit by a car. Then there are the numerous bumps and bruises just from hitting walls and floors and things. Emotionally it hurts all my family and friends (especially those that might present during the fit) and it takes me weeks to get back on track emotionally afterwards, it is just pure logic that keeps me from spiralling downwards! > Secondly, > you say Julie, "I do appreciate that I have figured out what > triggers my seizures so I can remain seizure free after so many years." Would > you be so kind as to share with the rest of us a bit of your methodology so > that we might benefit from your laudable efforts? If there are specific triggers, they tend to be common with the fit. EG alcohol with me fits the morning after a session 2 or 3 times says there is a potential relationship, likewise with other things. Also, if you do something once and have a fit, chances are it is the unusual thing that is the cause. It isn't rocket science, though the relationships will be easier to notice in some than others. SignatureSimon 51:31N 0:38W http://www.cookie-pool.co.uk/Pool1.htm http://www.maidenhead.astronomical.society.care4free.net/ http://www.popastro.com/home.htm > I am wondering why folks are so negative about their seizures. I > experience the danger of banging my head, but I do generally [quoted text clipped - 8 lines] > calmly and reasonably indicate why they hold such > negative views about their seizures. Many thanks, Tim I have complex partial seizures and I really hate them and dread having them. The feelings and sensations themselves are pretty uncomfortable although there is no pain. People don't even know I'm having a seizure even if I have one right in front of them, so I don't have the same social negative responses other people might get, but I hate them just the same. Sometimes, I think for me that the seizure symptoms, the before and after stuff, kind of contribute to this feeling of dread. You know, you've (I've) done my best to keep the seizures under control and it just doesn't matter sometimes, so there is a lot of frustration. I don't like have root canals either, but when it's done, it's done and maybe you will never have to go through another root canal again. With seizures, you know it's going to happen again, and again, and again. Barb It's like in any horror/slasher movie when you know someone went down the wrong hall/road/trail and suddenly "it" springs up on them and starts hacking away. If you're lucky, you'll go into grand mal, and you won't remember, just you fortunate friends and family who get to witness it. But, more often then not, it'll be some sort of partial, and you'll just have to sit through it with your brain screaming until "it" goes away. I think you must be having Disney seizures, a lot of us here have Stephan King seizures. There has been a lot of research recently on pseudoseizures. It's been discussed on this newgroup. You might be able to find some answers there. It seems quite often people's brains use this route to work out deeply rooted psychological issues. Hey, been lurking around here for a while but wanted to join in this thread: I just watched an episode of 'Chicago Hope' recently dealing with just this topic (probably a very old episode), but it was about this doctor who had seizures and wouldn't take meds because she got a 'high' from her seizures. It scared the hell out of me and I couldn't understand how anyone would voluntarily have seizures when there are ways to deal with them. I know that the meds are crappy in many cases, I've experienced that myself and am currently trying to find out what's 'right' for me along with my neurologist, but to choose seizures over meds doesn't make sense to me. When I've had a seizure (and they don't even know what type of epilepsy I have - we're trying to find that out as well - but I have Nocturnal Grand Mals), I'm so beat up the next day that I may as well stay home from school, because neither my body or my brain will function. I just sleep all day. In my experience seizures are a bad thing. And also the meds that go along with them. It's a choice between pest and cholera, but I'd rather have my head scrambled by meds than by repetative seizures, which also leave my body useless.. - Charlie > I am wondering why folks are so negative about their seizures. I > experience the danger of banging my head, but I do generally [quoted text clipped - 8 lines] > calmly and reasonably indicate why they hold such > negative views about their seizures. Many thanks, Tim > Hey, been lurking around here for a while but wanted to join in this thread: > [quoted text clipped - 16 lines] > > - Charlie I saw a neuroscience program on the Discovery channel once that interviewed a man whose seizures gave him a sense of supreme awareness of the universe, as if he were in touch with God. At those times he felt if he were immortal and had special powers. He enjoyed the feelings so much that he refused treatment of any kind. He felt that treatment would reduce the quality of his life. It seems that this is a well documented manifestation of seizures. I've included some recent article abstracts below that describe some cases. Some of the patients actually wished to experience their seizures. 1: Epilepsy Behav. 2003 Dec; 4(6): 667-73. Partial epilepsy with "ecstatic" seizures. Asheim Hansen B, Brodtkorb E. Department of Neuroscience, Faculty of Medicine, Norwegian University of Science and Technology, Trondheim, Norway. Reports focusing on auras of ecstasy or pleasure have been limited largely to single case descriptions. We examined 11 consecutive patients with such ictal symptoms. Eight had sensory hallucinations, four had erotic sensations, five described "a religious/spiritual experience," and several had symptoms that were felt to have no counterpart in human experience. Ictal EEG recordings were performed in four patients; two had seizure onset in the right temporal lobe and two in the left. In seven the onset could not be definitely localized. The diagnosis of epilepsy was often delayed. Eight patients wished to experience seizures; self-induction was possible in five and four showed treatment noncompliance. In patients with insufficient drug intake, in whom good compliance should be expected, it is relevant to consider seizures with pleasant symptomatology. According to the literature, experiential and ecstatic seizures seem to have had a substantial impact on our cultural and religious history. ======================= 1: Psychiatry Clin Neurosci. 1998 Jun; 52(3): 321-5. Religious experiences in epileptic patients with a focus on ictus-related episodes. Ogata A, Miyakawa T. Faculty of Education, University of Kumamoto School of Medicine, Kumamoto University, Kurokami, Japan. Two hundred thirty-four epileptic patients were examined for ictus-related religious experiences. Of the 234 cases, three (1.3%) were found to have had such religious experiences. All three cases had temporal lobe epilepsy with post-ictal psychosis, while one exhibited a simple partial seizure. At the same time, interictal experiences with hyperreligiosity were recognized in all three cases. The incidence of religious experiences while in a state of post-ictal psychosis was 27.3%, which is regarded as high, indicating some influence by the religions that the patients had faith in. Patients who had ictus-related or interictal religious experiences did not believe solely in Buddhism, a traditional religion in Japan, but rather in a combination of Buddhism and Shintoism, new Christian sect, contemporary Japanese religions and/or other folk beliefs. This indicates that these experiences had some connection not only with the personality characteristic of temporal lobe epilepsy, but also with the general lack of religious conviction and activity in Japan. In addition, the cases having ictus-related religious experiences also had interictal religious experiences and an interaction was seen between them. In this paper, the importance of taking bio-psycho-social aspects into consideration is pointed out in the discussion of epilepsy and religion. > > I am wondering why folks are so negative about their seizures. I > > experience the danger of banging my head, but I do generally [quoted text clipped - 8 lines] > > calmly and reasonably indicate why they hold such > > negative views about their seizures. Many thanks, Tim Howdy! I'd gladly give you all of my burn scars, skin grafs and ankle pins (all results of seizures) if you want to swap places! SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > I am wondering why folks are so negative about their seizures. I > experience the danger of banging my head, but I do generally [quoted text clipped - 8 lines] > calmly and reasonably indicate why they hold such > negative views about their seizures. Many thanks, Tim >Howdy! > >I'd gladly give you all of my burn scars, skin grafs and ankle pins (all >results of seizures) if you want to swap places! Hi Dave - you seem to have had some very unpleasant experiences as a result of your seizures. Have there been any positive side effects that you might mention? Howdy! NOPE! Well... maybe the fact that I was classified as 4F by my draft board. Why don't you list a few of the wonderous benefits that you have obtained from epilepsy. (You DO have epilepsy, don't you?) SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > >Howdy! > > [quoted text clipped - 4 lines] > your seizures. Have there been any positive side effects that you might > mention? > Howdy! > [quoted text clipped - 4 lines] > Why don't you list a few of the wonderous benefits that you have obtained > from epilepsy. (You DO have epilepsy, don't you?) Well, I WAS sorry to lose the insight and understanding of people, music, poetry and other writings when my tumour was extracted. But I WASN'T sorry to lose the feelings of utter misery at times nor the potential for having fits for the rest of my life and not being able to drive. On balance, it was worth losing the former to the latter. Mary > > >Howdy! > > > [quoted text clipped - 5 lines] > > your seizures. Have there been any positive side effects that you might > > mention? > Howdy! > [quoted text clipped - 4 lines] > Why don't you list a few of the wonderous benefits that you have obtained > from epilepsy. (You DO have epilepsy, don't you?) Well, I WAS sorry to lose the insight and understanding of people, music, poetry and other writings when my tumour was extracted. But I WASN'T sorry to lose the feelings of utter misery at times nor the potential for having big fits for the rest of my life and not being able to drive. And the idea of being on mind and body-controlling medication for ever was terrifying. On balance, it was worth losing the former. Mary > > >Howdy! > > > [quoted text clipped - 5 lines] > > your seizures. Have there been any positive side effects that you might > > mention? >Well, I WAS sorry to lose the insight and understanding of people, music, >poetry and other writings when my tumour was extracted. ....."insight and understanding of people" Further explanation politely requested with interest, if it's OK with you? SignatureMalcolm > >Well, I WAS sorry to lose the insight and understanding of people, music, > >poetry and other writings when my tumour was extracted. [quoted text clipped - 3 lines] > Further explanation politely requested with interest, if it's OK with > you? It was very strange. I gradually realised that I understood much better than before what people meant in what they said, even if they didn't say everything. I could anticipate what they were going to say and how they were feeling. Several people told me that they liked being with me because I knew what they were thinking, feeling and saying without their having to articulate it. It's not easy to explain, sorry. And it's all gone, excised by the surgeon's knife. Its removal was instananeous - but so were the bad feelings and other conditions such as not being able to smell. A daughter brought in some freesias when she visited as I came from theatre, I could smell them all through the night and it was a wonderful experience. Odd, isn't it, what one remembers ... Mary > I am wondering why folks are so negative about their seizures. I > experience the danger of banging my head, but I do generally [quoted text clipped - 8 lines] > calmly and reasonably indicate why they hold such > negative views about their seizures. Many thanks, Tim g'day tim, very interesting topic. i gotta say the only the positive i can think of is the great feeling i get when people go out of their way to help me when i have trouble. but negatives - i don't think i'll miss the headaches which feel like a trip hammer pounding or your brain after a seizure. or how about the pain and anguish in your family's eyes when they see you having trouble and there is not a thing they can do to stop it. and what about the brain fog and the moodiness caused by the pills you have to take to give you some control over your condition. and i'm not fussed about a seizure causing me to lose bladder control out in public which can be quite embarrassing when you leave a puddle like your new puppy used to leave on the floor or the lovely wet patch on your trousers as you walk around. no i think the cons outweigh the pros significantly, i definitely wouldn't miss epilepsy if i managed to receive a miracle cure. pablo "TIMMCO" <timmco@aol.com> wrote in message: > I am wondering why folks are so negative about their seizures. I experience the danger of banging my head, but I do generally have the aura to warn me to get down. (I don't drive) I realize there is the social stigma of acting out of control and being a burden on others who do not realize that in a few minutes everything will be back to normal. I do appreciate the after effects where new perspectives are discovered on old subjects. > There seems to be an assumption here that seizures are innately bad things to experience. I would be most appreciative if folks would calmly and reasonably indicate why they hold such negative views about their seizures. Many thanks, Tim I've read the responses of the other members about this topic. I have CPS and Simple Partial seizures. (These are the type in which a person has an aura, is aware of the seizure and experiences a great deal of fear, emotional confusion and exhaustion.) There is *SO* much more involved to the effects of having epilepsy than, as you said, "the social stigma". I have taken many anti-epileptic meds. So far, 100% control hasn't occurred. That's okay. My physical quality of life is better than is was before my diagnosis. Having epilepsy is like carrying a heavy, silent relative around constantly. Epilepsy never moves away. It often leaves you vulnerable & embarrassed, and exposes you to every conceivable emotion known to humans. Chunks of time and what might have been said or done are missing as a result of my seizures. Hours, or even days later, I'll ask my husband, family, or friends, "Did I have a seizure the other day?" I take issue with your wording of people with epilepsy "acting out of control and being a burden on others". First, seizures are not an act---they are very real! How insensitive! Secondly, if someone is 'burdened' by my disability, they aren't required to be in my company. It is their choice. I attempt to educate folks so they know what to do. If they are uncomfortable or embarrassed by my seizures---TOUGH!!!! Would you dare to look at a person who had been abused and pose such a characterization??? For me, a paranoia exists that a seizure will take place when & where it will be unsafe. A stranger might hurt me. I imagine this sense to be a slighter version of a the fear and shame people who have been abused feel. Does it ever really disappear? After being diagnosed with having seizures, life changes. It begins the process of coping and adapting. Nothing, absolutely NOTHING will ever be back to normal {whatever THAT is!} again. Before I married, I saw a OB/GYN. He told me that because I take seizure meds, it would be best for me to have surgical birth control. I did. It was one of the most heart-wrenching, regretful decisions I've ever made. Epilepsy isn't negative??? Tell me that every Mother's and Father's Day. Intelligent, able workers are often rejected as "too risky" to fill the needs of the workforce. Why? "What if good old Joe Blow has a seizure at work? We don't want to be liable for an injury that might occur. Someone who is prone to having 'fits' (not an acceptable term, IMO) doesn't represent the image of XYZ Company." Yes, there is the Americans for Disabilities Act. It doesn't provide the level of protection & enforcement to stop the junk that happens in the employment world. If a person cannot work, it adds to the level of low self esteem, stress, and depression. The person's epilepsy activity and quality of life *are* negatively affected. Trust me, I recall the time when my seizures were very frequent. Things have improved. I know in comparison to the situations of other people, I am truly blessed. Regarding epilepsy, to say that positive attributes out-number negative things is totally absurd. We do the best we can to live WITH the seizures moment by moment, day by day. Suzanne This won't post on alt.support.ep group, I only read it about 1-2x a week now. "Timmco" who you replied to below uses a news service that goes through 'audrey-m2.news.aol.com.' **Strangely that's the SAME provider and Tone of Post as a new one that just went up about 3? hours ago from 'unknownorigens'. They sound so much ALIKE they could be TWINS.... They could even be the SAME PERSON being an A**hole on the group. It was because of people like him (and Howdy whining if I identified a Phisher or a Troll) that I don't post there any longer. IF you can ignore those two 'personalities' the rest of the group are useful. Julie has the Idaho Website at end of her posts, if you haven't seen her First Aid for Seizures + other stuff she has. Both she + Howdy have links to Ep. Foundation of America that can be bookmarked. Pablo lives in Australia, Cyber lives in the U.S. (a woman too with CPS, whether 'unknownorigens' (his spelling) likes using abbreviations or not). Some of these disruptive posters, I wonder sometimes if they even HAVE EPILEPSY. When I challenged another guy about *2 months ago, he finally admitted he DIDN'T but went to groups to help 'us with our enlightenment' and he left ---->>> OR I **THINK*** he left. Reply to Sender works to my address, if you don't already have newsgroup links or can't find Julie's Idaho site.. PLEASE **Don't mention on the group I contacted you, I won't read it AGAIN NOW for more than 7 days, and I want to write Pablo and Julie about this........ / ************************************* > "TIMMCO" <timmco@aol.com> wrote in message: > > I am wondering why folks are so negative about their seizures. I [quoted text clipped - 58 lines] > WITH the seizures moment by moment, day by day. > Suzanne I have to agree with the other members who have replied to this post. There is no way that I can look upon my seizures as a positive thing when they cause me physical and emotional pain, depression and embarrassment, not to mention the memory loss, if not outright brain damage, that each one inflicts. Not being able to drive is trivial compared to the other problems they cause. I am far more fortunate than other members of this group in that even at their worst the seizures only happened once a week or so, and now they are mostly under control. Perhaps if I did not have to work, I would stop my meds to avoid the side effects, but not because I want to experience more seizures! Even the simple partials are frightening and have an adverse effect on my and my husband's life. > I am wondering why folks are so negative about their seizures. I > experience the danger of banging my head, but I do generally [quoted text clipped - 8 lines] > calmly and reasonably indicate why they hold such > negative views about their seizures. Many thanks, Tim Howdy Tim! Looking at your postings and the responses, it looks like folks may be talking about 2 totally different things here! Please tell me, IN DETAIL, exactly what is involved in a regular incident that you label "A SEIZURE"." After all, there are so many different types of seizure that it might be a good idea if we knew for a fact that we were all talking about the same thing. For some of us, a seizure can end up with torn muscles, breaking the toilet with my head, breaking bones if one is too close to furnature and the like. Is THIS (full convulsions) what you're talking about when you say "SEIZURE"? SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com Howdy Dave - Thanks for seeking to clarify. I get a breif, few second warning which people call auras. It's kind of a tingling and other-worldly kind of feeling which warns of what is to follow. Time to get down if I'm standing. Then it is several minutes of blackout and thrashing around from what has been described to me. On New Years Day I was walking through a local park, felt the aura, got to a nearby bench and woke up in the emergency room at the nearby hospital. So the blackout could be as much as 15 or 20 minutes. By the time I wake up, I'm ready to go home, just as the MD's are starting to draw blood and get me to a MRI machine - a machine which has consistently shown nothing abnormal. So I usually have to fight my way out of the emergency room or slip out the back. I am sorry to be a burden on society's resources, but I did not choose to have the seizure, and I wish someone had not called the 911 emergency number. I get the impression that a number of folk here have internalized society's scornful frown on people who may be different from the majority. I did appreciate the comments on how our seizures can foster the care and understanding of others. If I were God and was designing this incredibly complex organism called Man, I would have made some black and some white, some left-handed and some right, some with seizures and some without. It creates conditions potentially fostering the better side of our humanity. Alas, potentially the worse as well. I do believe there is slow and steady progress. Howdy Tim! Looking at your postings and the responses, it looks like folks may be talking about 2 totally different things here! Please tell me, IN DETAIL, exactly what is involved in a regular incident that you label "A SEIZURE"." After all, there are so many different types of seizure that it might be a good idea if we knew for a fact that we were all talking about the same thing. For some of us, a seizure can end up with torn muscles, breaking the toilet with my head, breaking bones if one is too close to furnature and the like. Is THIS (full convulsions) what you're talking about when you say "SEIZURE"? SignatureDave ©¿©¬ "Noli illigitemi carborundum decendus" http://www.howdydave.com
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