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Medical Forum / Diseases and Disorders / Epilepsy / April 2004Sequel to "Tonight's Experiences" thread I started
Sorry. I should have gotten back to you all. Nothing wound up happening, except lack of sleep from fear of something happening. Sorry to keep you all waiting. School restarted for me on Monday and I had been too tired to check e-mails and post here. School wipes me out both physically and emotionally. > Sorry. I should have gotten back to you all. Nothing wound up > happening, except lack of sleep from fear of something happening. Sorry > to keep you all waiting. School restarted for me on Monday and I had > been too tired to check e-mails and post here. School wipes me out both > physically and emotionally. Glad to hear you are OK! (Relatively speaking...;-) Welcome back! -- David Ruether rpn1@cornell.edu http://www.ferrario.com/ruether > Sorry. I should have gotten back to you all. Nothing wound up > happening, except lack of sleep from fear of something happening. Sorry > to keep you all waiting. School restarted for me on Monday and I had > been too tired to check e-mails and post here. School wipes me out both > physically and emotionally. Some seizure types are also aggravated by becoming over-stressed or over-tired. If you can, try pace yourself so that the longer hours studying don't conflict with normal amount of rest. I know that's sometimes harder to do depending on workload, but if you stress your 'circuits', the 'circuit breakers' will trip and force you to slow down anyway. Better to do it voluntarily, than lose seizure control (I assume you have it back now). G.R. Gaross wrote: >Some seizure types are also aggravated by >becoming over-stressed or over-tired. If you >can, try pace yourself so that the longer hours >studying don't conflict with normal amount of >rest. Honestly, I don't do that much studying outside of school. I have two study halls, so I usually can keep up the work. What wears me out is just dealing with school, classes, other students, etc. Especially since most of my peers see me as the "weird girl who should be avoided" and the teachers treat me like a piece of glass. >I know that's sometimes harder to do >depending on workload, but if you stress your >'circuits', the 'circuit breakers' will trip and force >you to slow down anyway. Better to do it >voluntarily, than lose seizure control (I assume > you have it back now). I have to go to school, so there is not anything I can do about that right now. I keep up my homework by doing it in my study halls. My classes are not all that hard (my schedule: study hall, child dev. and parenting (don't worry. NO kids here.), law education 2-constitutional law, human dev. and family wellness, study hall, english 12b, and economics. Only seven classes, with about 2-3 semi hard courses. I have never had TOTAL seizure control. The meds work when they want to and don't work when they do not want to. They semi control the grand mals and have little to no effect on my absence seizures. I remember what it was like when I was at school....about a thousand years ago....and the teachers treated me like glass too. They were always concerned that I was working too hard, or sports were too physical for me, etc. One time I remember falling backwards off my chair cos I was leaning back too far. Embarassing enough in front of a class of 30 kids, but then the teacher ran up to me and asked in a loud voice "Are you okay? Did you get any brain damage?" -- To email, change daryl to darryl in address. Gaross wrote: >Some seizure types are also aggravated by >becoming over-stressed or over-tired. If you >can, try pace yourself so that the longer hours >studying don't conflict with normal amount of >rest. Honestly, I don't do that much studying outside of school. I have two study halls, so I usually can keep up the work. What wears me out is just dealing with school, classes, other students, etc. Especially since most of my peers see me as the "weird girl who should be avoided" and the teachers treat me like a piece of glass. >I know that's sometimes harder to do >depending on workload, but if you stress your >'circuits', the 'circuit breakers' will trip and force >you to slow down anyway. Better to do it >voluntarily, than lose seizure control (I assume > you have it back now). I have to go to school, so there is not anything I can do about that right now. I keep up my homework by doing it in my study halls. My classes are not all that hard (my schedule: study hall, child dev. and parenting (don't worry. NO kids here.), law education 2-constitutional law, human dev. and family wellness, study hall, english 12b, and economics. Only seven classes, with about 2-3 semi hard courses. I have never had TOTAL seizure control. The meds work when they want to and don't work when they do not want to. They semi control the grand mals and have little to no effect on my absence seizures. I have never had TOTAL seizure control. The meds work when they want to and don't work when they do not want to. They semi control the grand mals and have little to no effect on my absence seizures. Are you the same Dawn who said that you had imbalances of chemicals in your brain and not epileptic seizures? Mary Mary wrote: >Are you the same Dawn who said that you >had imbalances of chemicals in your brain and >not epileptic seizures? Yes, I do have a chemical imbalance on the right side of my brain. I have not been diagnosed with epilepsy yet. The neurologist has not said that my seizures aren't epileptic seizures. I have absence/petit mals and grand mals, and I think Simple Partials. He has given me no reason that my seizures are any different than those found in epilepsy. > Mary wrote: > [quoted text clipped - 7 lines] > and grand mals, and I think Simple Partials. He has given me no reason > that my seizures are any different than those found in epilepsy. Hello Dawn, I asked becaue it's puzzling to read your accounts of seizures which you actually name - the same descriptions and names as epileptic seizures. You sound to be more confident in your life these days, despite your seizures. I hope that's so. Here, most of us have learned to live with our conditions. There's no choice :-) Keep posting, Mary Mary wrote: >I asked becaue it's puzzling to read your >accounts of seizures which you actually name >- the same descriptions and names as >epileptic seizures. Though my neurologist has not come out and said it, I think I do have epilepsy. I just think he hasn't described it as that (he never gave me the proper names of the seizures. i had to do research and find out from observers who knew people like me what the names were), He tends to call grand mals "full" seizures, absence seizures "trances/mini seizurs", etc. In a way, maybe he just doesn't want to scare me. >You sound to be more confident in your life >these days, despite your seizures. I hope >that's so. Here, most of us have learned to live >with our conditions. There's no choice :-) I am not really more confident; I am still freaked to do things alone (ex:climb stairs). I guess I am just starting to get it set in my head that this is going to be a problem I will have to deal with whether I like it or not. > Mary wrote: > [quoted text clipped - 4 lines] > > I am not really more confident; I'm sorry about that but I sincerely hope that with a greater understanding of your condition you WILL be more confident that you can cope with your activities. AT all stages in life we have to take different amounts of care. Now that I'm older I have to be far more careful with stairs than I used to be, because of arthritis. When I find that I'm being less confident about things I take myself in hand and adjust my activities to suit the problems. > I am still freaked to do things alone > (ex:climb stairs). Holding on to the banister or other support is a great comfort! > I guess I am just starting to get it set in my head > that this is going to be a problem I will have to deal with whether I > like it or not. Yes, and that's good. It's a step towards better control. There's no point in denying it, or even challenging it. Use your obvious intelligence to accomodate it. Warmly, Mary Mary wrote: >I'm sorry about that but I sincerely hope that >with a greater understanding of your condition >you WILL be more confident that you can >cope with your activities. If I could get some form of control over my seizures, I think I could really cope with it. It is just hard when I stay freaked that I could have a grand mal (the only kind I really worry about) at any second and I won't even know I have had it until I come out of it. It is a lot of worrying on a day to day basis. >Holding on to the banister or other support is a >great comfort! I don't really worry that I will trip on stairs; I do that all the time. I just imagine that I could have any kind of seizure and fall down. Holding on to the banister wouldn't really help me if that happened, though at public places (ex: my school) you are walking down with about a hundred people and it is hard to be the one near the banister or the wall. > Mary wrote: > [quoted text clipped - 8 lines] > I won't even know I have had it until I come out of it. It is a lot of > worrying on a day to day basis. I do understand that - but you really mustn't let it take over your life. There are other things to enjoy! Seizures don't even take up as much time - for most people - as sleep does so make the most of your good time. > >Holding on to the banister or other support is a > >great comfort! [quoted text clipped - 5 lines] > a hundred people and it is hard to be the one near the banister or the > wall. LOL! But in that case you'd have a soft landing :-) Mary Mary wrote: >I do understand that - but you really mustn't let >it take over your life. There are other things to >enjoy! Seizures don't even take up as much >time - for most people - as sleep does so >make the most of your good time. The related and unrelated effects do take up a good chunk of my time. The recovery out of one takes up to one hour to one day. Unrelated effects: all the worryin explaining in detail what happened in the pre-seizure period to my parents if I have one, explaining to paramedics if I am in public and someone freaks and calls them, taking extra precautions on a day to day basis, taking the medical tests my neurologist keeps having me run, etc. It is really a lot more time than anyone thinks. I had to cancel out of an Academic Recognition Dinner (not including a whole lot of explaining to the teacher that I had invited to go with me) and a few other scheduled events just because of tests I have to due next week. I am sorry I ranted, but I have a lot of reasons to worry on a day to day basis. Some of the reasons go past me. It scares my mom anytime I have any kind of seizure; the worse I get, my dad worries more and more and more. I have pretty much killed a lot of my parents' bank accounts due to costs that my insurance decides they don't want to cover. I hate putting my family through pain, both emotionally and financially. Plus my mother has to deal with my school trying to say I am missing too much, though I always have doctor/hospital excuses. Just one seizure and I set all this in motion again. So, yes I fear injuring myself, but I know what it is doing to others around me emotionally. > Mary wrote: > [quoted text clipped - 18 lines] > a hundred people and it is hard to be the one near the banister or the > wall. You've found 'the right place'... I'd bet that there isn't anyone Around Here who doesn't go through what you're getting. First the feeling of 'why me?' , 'what did *I* do to ask for this?' , then a victory or two that WE notice (doesn't matter if others do, so long as We see if we're improving or getting back control of something we thought we had lost), then 2-3 steps forward, then some kind of set back (maybe not), but sometimes things will improve then 3-4 months later Something -- Paint odour, Sour Apple Cider, undercooked meat - Something will trip off an Aura or sensation like we used to have ahead of a seizure, and we slip quickly back into a fear that a ''BIG ONE'' is on the way. It's often (99%) NOT, but we mess up our day worrying about that *1%. It's Hard sometimes to say to ourselves ("Well once per 100 times, I fall into my dessert, but the OTHER 99 times out of a hundred*I*Don't !! I'll take 99% !! If that was a Math Test I'd get a Gold Star for that !! But when we get to a balance, either with avoiding things we find can cause an onset, OR things just improve for reasons we don't understand (allergies? outside stress? a cat that hides my Toothbrush? ), we don't always know what might clear things up, but we still worry that it's a 'trick', and I might have Another one sometime Soon without an Aura or warning or anything.... Do you ever get szrs. while you're asleep? or do they tend to happen when you're mobile? (There's a Dental thingy I use that I found out about in 1998 that keeps us from injuring ourselves at night if you had the former. I can post the Name etc. if that's when some of your szrs. arrive. Some of us aren't prone (to seizures !) at night, but other types might happen easier if we're relaxed and asleep.) G.R. >You've found 'the right place'... I'd bet that >there isn't anyone Around Here who doesn't [quoted text clipped - 6 lines] >then 2-3 steps forward, then some kind of set >back I have had mostly steps backward with a few baby steps forward. No real "victories" yet. >when we get to a balance, either with avoiding >things we find can cause an onset, OR things >just improve for reasons we don't understand Like I said in an earlier post somewhere, I have an imbalance in my brain, so my triggers are really unknown thus far. I just get to wonder when everything wants to go "haywire" in my brain and I wind up in some form of a seizure. Also, I haven't really been doing any improving. In some ways, I have gotten worse lately. >Do you ever get szrs. while you're asleep? or >do they tend to happen when you're mobile? There is not a real differential if you mean in my grand mals. It has been about half and half. Lets see, if my memory is working correctly, I have had six in my sleep and about five when I have been awake thus far. gaross wrote: >Do you ever get szrs. while you're asleep? or >do they tend to happen when you're mobile? There is not a real differential if you mean in my grand mals. It has been about half and half. Lets see, if my memory is working correctly, I have had six in my sleep and about five when I have been awake thus far. Do you keep a diary of your seizures? I do, I record the date, the time, the feelings I have before and the type of feeling I have and its effect on me. I also record what I was doing at the time. So far there's very little in common :-) But there might be in other people's. Mary I kept a seizure diary for three years. I've never been able to see any correlation with anything other then my menstrual cycle, and that's just sometimes. The only one I had that we knew the reason for was the one grand mal I had, which was Paxil-induced. I'd do just about anything not to have another one, mostly because how horrifying it was for my family. > I kept a seizure diary for three years. I've never been able to see any > correlation with anything other then my menstrual cycle, and that's just > sometimes. I don't have that ... and didn't when I had my first episode. > The only one I had that we knew the reason for was the one grand mal I had, > which was Paxil-induced. I'd do just about anything not to have another one, > mostly because how horrifying it was for my family. I don't know what Paxil is but, if your grand mal was induced by it, isn't is possible to avoid it? That's one of the benefits of keeping a record, I tell myself, if there are any common factors I could avoid them. To date, as far as I can tell, there aren't in in my case ... but since I don't have any bad episodes now it's not all that important. I'm still very intereested in others' history. Mary Paxil's an antidepressant/antianxiety med. My family is going through some horrors right now, and I'd hoped Paxil would help me deal better and stay calmer. Of course after the grand mal I stopped taking it. There is a warning about taking Paxil if you have a seizure disorder, but of course, I didn't research enough. Lesson learned the hard way. I will always, always, always investigate any Rx or OTC med from now on. I found my Pharmacist really good for watching for conflicts w. Meds. I buy All Cold or Other medicines I might ever need at the **same Pharmacy I get prescriptions at, then take it to her to ask her if there are any conflicts. (Although I've only had about *3 colds in 10 years, vs. 3-4 a year before, she said also that some cold medicines use alcohol as a carrier, and she could check any I needed to make sure there were no conflicts with my Tegretol. Actually I can check those now myself, if I ever had another cold, so long as I know what affects the Med., but the Pharmacist has the up-to-date scripts etc. if there were any **new research published.) But some of these things (like your post below), is just one of the steps we take with this New Us, to close any loop-holes on side effects or conflicts that we might not have been concerned about before. The 100% control, when reached, is worth the extra trouble. G.R. > Paxil's an antidepressant/antianxiety med. My family is going through some > horrors right now, and I'd hoped Paxil would help me deal better and stay [quoted text clipped - 6 lines] > Lesson learned the hard way. I will always, always, always investigate any > Rx or OTC med from now on. > Paxil's an antidepressant/antianxiety med. My family is going through some > horrors right now, and I'd hoped Paxil would help me deal better and stay [quoted text clipped - 6 lines] > Lesson learned the hard way. I will always, always, always investigate any > Rx or OTC med from now on. Doesn't the prescribing doctor do that? Mary Are you serious? You must've had some incredible luck with your doctors. I do medical transcription and have done too many reports detailing horrors that resulted as a rediculously stupid mistake on a doctor's, nurse's or hospital's part. Years ago, when my father went in for his prostate surgery (at the age of 70-something) the scrub nurse was flabbergasted because his medical records stated he was a 12-year-old getting his tonsils taken out. One of my sons gets hives from amoxicillin, and every time he needs an antibiotic I have to remind them that "No, he can't take that." Even though it's right there in his medical record in big red letters. > Are you serious? You must've had some incredible luck with your doctors. I don't think it's luck. It's a built in safety system :-) There ARE mistakes of course, the man who never made a mistake never made anything. That includes me. If research and check I might get something wrong, there might be something wrong with my sources ... I do trust the doctors who hve prescribed for me. As for those mistakes, it's the exception that proves the rule ... there are far, far fewer mistakes than successes and you can't expect 100% all the time. There are too many humans in the chain - including the patient. Mary > > Are you serious? You must've had some incredible luck with your doctors. > I don't think it's luck. It's a built in safety system :-) > [quoted text clipped - 11 lines] > > Mary I think we are talking about two different medical systems. Mary is in the UK, Dona is in the US, most likely.... In the US, the "druggist" is the one who keeps track of the medications - most doctors in the US appear to have no idea what any other doctor involved with a patient has done. I have requested *in person* that records be sent from one doctor to another, and signed for the release, and still find that generally the records do not go anywhere! I have taken to collecting copies of records, and I carry them myself. And, when I once took my father to the hospital for an endoscopy, - I was told the wrong entrance (important at the time). - my father was mis-identified. - when that was straightened out, they had the wrong bio info. - when that was straightened out, they had the wrong procedure listed. - when that was straightened out, they were not aware that he was alergic (spectacularly so) to the intended anesthetics. I'm amazed he survived... Total incompetence! SCARY!!!!! -- DR Yes I am in the US, but no matter where you are I think researching your health conditions and medications is very important. I trust my doctor's knowledge base, particularly as a launching point for my own quest of the particulars involved. > Yes I am in the US, but no matter where you are I think researching your > health conditions and medications is very important. I trust my doctor's > knowledge base, particularly as a launching point for my own quest of the > particulars involved. I was recently accused by a neurologist (seen briefly for an opinion) for being "obsessed with things medical" for doing just that - and he used it as proof that my condition "was in my head, with no possible neurological basis"(!). If his credentials had not been so impressive, I would have said something to him most unkind, and left! As it is, my opinion of "things medical", and those involved with it, sags ever lower, almost daily...;-) -- DR > > Yes I am in the US, but no matter where you are I think researching your > > health conditions and medications is very important. I trust my doctor's [quoted text clipped - 5 lines] > just that - and he used it as proof that my condition "was in > my head, with no possible neurological basis"(!). That's sad. I've never done anything like that with consultants but I have talked to my GP about different ideas and he's always discussed them with me and said that he encourages people to do their own research. After all, he doesn't know everything. Nobody does. Mary > > Yes I am in the US, but no matter where you are I think researching your > > health conditions and medications is very important. I trust my doctor's [quoted text clipped - 9 lines] > and those involved with it, sags ever lower, almost daily...;-) > DR *** If you got him through a referral, you might want to ask the originating Dr. for Another one-- one that's Real this time. It's surprising sometimes what we'll sometimes put up with, that we wouldn't if it was a Mechanic checking a car, or a 'Vet' checking a pet. I don't think, based on what you posted, that this one's credentials sound that impressive. And I guess he doesn't understand also, exactly Where things neurological originate ?? Perhaps He's deluded and only Thought you valued his opinion. If you get another referral try remember to tell the Originating Dr. why you think he shouldn't refer people to Dr. No. 2 so others can be saved unnecessary waits for assistance. G.R. > > > Are you serious? You must've had some incredible luck with your doctors. > [quoted text clipped - 16 lines] > I think we are talking about two different medical systems. > Mary is in the UK, Dona is in the US, most likely.... I did wonder. Mary Mary wrote: >Do you keep a diary of your seizures? Not really. I mean, I keep up the days I have grand mals or if I experience something new. Other than that, no. I usually don't have enough time to mark down every thing. Plus, with the absence seizures, by the time I am out f school, I forget exactly when I had it or how long I had it. > Mary wrote: > >Do you keep a diary of your seizures? [quoted text clipped - 4 lines] > by the time I am out f school, I forget exactly when I had it or how > long I had it. When you're at school you don't have a notepad or calendar where you record when exams are due or assignments? You don't need a Desiderata to look back at, even just 'absence? chemistry 201, 2 hours after lunch, no aura' that could then be transcribed or added to a list at end of the day would help. Several of my Complex Partial ones, I found when on first med. would produce a Deja Vu when the dose was wearing off, sometimes a False Taste (lemon) that wasn't there, and I happened to be near Bleach or Paint Cleaners on two seizures I had. By determining that some of my szrs. were due to outside effects (last 2 above), we didn't need to raise med. doses, while some of the earlier ones usually meant an increase until we got to a level that controlled them. Usually with my Absence ones, I only knew I had them if someone outside me noticed them, OR I found 'strange writing' that was too cryptic even for me to read. I took some of them at the time to show the Dr. to confirm what he already knew about some of the onset symptoms of my type of szr. Oh, and since I have memory troubles anyway, I keep a log page (at home) and write the Times and amount of each Morning Dose as it's taken, and the Night time dose. Comments about (e.g. above auras, and possible (to me) Triggers of them) I note in the Comments Column beside the date I noted when the aura or seizure occurred. I took the Med. Log with me to Doctor appointments with a separate page if I had questions about my treatment or condition I wanted to remember to ask him about. G./ > > Mary wrote: > > >Do you keep a diary of your seizures? [quoted text clipped - 29 lines] > appointments with a separate page if I had questions about my treatment or > condition I wanted to remember to ask him about. G./ Sorry not to have snipped but some things are worth a second reading. This regime is well worth while for everyone. Mary Gaross wrote: >When you're at school you don't have a >notepad or calendar where you record when [quoted text clipped - 3 lines] >no aura' that could then be transcribed or >added to a list at end of the day would help. Yes, of course, I am required to carry paper to classes. But you don't understand; I can't just stop in the middle of taking notes or in a discussion and say "Hold up, I have to write something down." I miss so much school now, it is a constant fight to keep up. The school can kick me out if my grades fall below a letter grade of what I had before I had to start missing so much. I am lucky right now, since my assistant principal is working with me since I am keeping everything up and get work into the teachers ASAP. If I leave something off to later to do, my memory can't handle keeping it in my mind either. Give me five minutes and I can only remember 2/3 of what someone said to me. My seizures, as far as memory goes, do not have a predictable pattern. One such thing doesn't always cause them. I have had them in a very varied situations. The only thing I have pinpointed at this point are that some of the absence seizures are brought on when I get upset or really stressed.
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