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Medical Forum / Diseases and Disorders / Epilepsy / February 2004My Seizure Back Story-Very Long
Whomever Cares: I have only been having seizures (total or whatever they are called. the doctor calls them full body) since actually August (correction to last post when I said Sept). I am 17 yrs old and will be 18 in May. I had one in August that I didn't know was one until after the second one. I had the second one Sept 9 at school. The next was a week later. Then I think I had one in October and one in November. Then I had six in one day (one at night before bed, then six early in the morning the next day before noon). I have been having the trances (where I stare off and space out for a few minutes-very shaky and light-headed-seizures trying to occur by what my neurologist says) since before last January (2003). I never knew really what they were until I had the first full seizure. I never had them checked out, because I did not think that they were anything to worry about. I actually figured that maybe (since I had a few people-an aunt and an uncle) I had just borderline low blood sugar. (Not been proven yet.) I have had these up to several times per day and spaced out for a week or two. After the second full seizure and before the six seizure "marathon" as I call it, I was recommended to a neurologist by my family doctor. I have been through 2 1-hr EEGs, 1 48-hr EEG, an EKG, a CT scan, an MRI, and a Vestibulator (sp?) test. The only thing my doctor concluded was that I had a chemical imbalance in the right side of my brain, but he doesn't know why the imbalance had occurred now. I was also told that some people like me can grow out of the imbalance, but it was doubtful with me since I had so many seizures in a short span of time. This was even before the last six. He originally put me on Dilantin and then added Keppra in January (2004). Though I always took it like the doctor instructed, as you have read, it didn't always work. After the six seizures, I spent a few days in the hospital. When I checked in, after a ton of blood-work, they figured out my DIlantin level was at a 3.6 (or something like that). As you all know, it should be between a 10 and 20. After increasing all the medication, I was released when the level hit 15. I also had to have another 1-hr EEG run while I was in there. A few days after I was released, I woke up with extremely blurry vision. I couldn't pick out very many objects and the only thing I could really see was color. I went back to the hospital, but all they concluded to lower the Keppra and let me have time to get used to the higher mg of Dilantin. I did get over the vision problem. The part that worries me is that I still have the trances ever so often. The medicine isn't stopping them. Is it normal for the medicine to just work sometimes and not work others? I figured maybe some of you could tell me. Is there any information I should know on the medicine from anyone's personal experience? Any help/support anyone could give me would be deeply appreciated. All of this happening so quickly is very scary to me. -Dawn > Whomever Cares: Here we all care. > The part that worries me is that I still have the trances ever so often. > The medicine isn't stopping them. Is it normal for the medicine to just [quoted text clipped - 3 lines] > would be deeply appreciated. All of this happening so quickly is very > scary to me. Epilepsy is very difficult to diagnose exactly, as with other conditions it has many manifestations according to the individual. We're not equipped to tell you about your diagnosis, only about out own experiences. They're all different. Surprisingly, perhaps, even doctors, even specialists, don't know everything either. The brain is so very complex and doesn't take kindly to being interfered with so we can't just open up a head and look at what's going on - even if it were that easy. You will learn about your condition by your own experiences. That's not to say that you won't learn from others, including people here. And we might learn from yours too. The main thing I want to say is don't be scared. It's understandable but you'll learn to live with your condition, the likelihood is that it will be controlled to some extent. What's more important on the scary issue is that even if you have to accept that you're suffering from acute or chronic epilepsy it's not as dangerous as travelling on the road! Keep a sense of proportion, stick around here and share your experiences, everyone will benefit. And work at your studies (that's the Mum and Grandma in me speaking). Hugs, Mary Mary > -Dawn Mary wrote: >What's more important on the scary issue is >that even if you have to accept that you're >suffering from acute or chronic epilepsy Actually, I was not diagnosed as epileptic. I was just told of the imbalance. It is so scary to me. I didn't even know what a seizure was until I had one. As far back as my living relatives (the ones I choice to stay in contact with) can remember, no one other than me suffers from seizures. > it's not as dangerous as travelling on the >road! I do agree with you there. I am not allowed to drive right now (have to go 6 months w/o a seizure), but I know from riding with family or the little experience I have that people drive VERY crazy. >Keep a sense of proportion, stick around here >and >share your experiences, everyone will benefit. Thats why I decided to post here. I thought it might help to talk with other somewhat like me. >And work at your studies (that's the Mum and >Grandma in me speaking). My family tells me that too. If everything is straightened out with my condition, I am planning on starting college in the fall. I was accepted into my first choice college. This is one thing I really have to look forward to. Hi Dawn, The brain is a very delicate, complicated and magnificent organ and almost anything you do to it can upset it if strong enough. An interesting statistic to keep in mind is that one out of every ten people will have a seizure at some point in their lives with most not going on to have epilepsy, and that one out of every 100 people do have epilepsy. That is, spontaneous and recurring seizures if not controlled by some kind of therapy. Epilepsy is one of the most common brain disorders out there. There's a very good chance that there are quite a few people in your school that do have epilepsy and probably have it under control in some fashion. What I'm saying is that people can live full and active lives in spite of having seizures, as I'm sure this newsgroup will attest to. It may take some clever thinking to find the underlying cause and/or find the right treatment to control the occurrence of your seizures, which might be why you haven't been diagnosed with epilepsy yet. Before I started studying epilepsy and seizures I had never knowingly met anyone with epilepsy and had never seen a seizure. Now, I believe that I must have met quite a few people over the years with epilepsy but just didn't know it. > Mary wrote: > [quoted text clipped - 30 lines] > accepted into my first choice college. This is one thing I really have > to look forward to. > Before I started studying epilepsy and seizures I had never knowingly met > anyone with epilepsy and had never seen a seizure. Now, I believe that I > must have met quite a few people over the years with epilepsy but just > didn't know it. Fifty years ago I went to the church Youth Club twice a week. One of our members would ocasionally fall to the floor, writing and jerking. We were told to clear the floor, give him room (we were usually dancing) and that he'd be OK. He always was OK. I didn't know him well but remember his name - I don't remember many names from that time unless I was closely involved with them - so he must have impressed me. That was my only known contact with seizures until I had mine but I realise now that it was a privilege to have witnessed it, to see Brian being as normal as the rest of us at other times and not to have seen people panic and having foolish reactions. Not everyone is as fortunate as we were and it's ignorance which breeds fear. Mary > Mary wrote: > [quoted text clipped - 4 lines] > Actually, I was not diagnosed as epileptic. I was just told of the > imbalance. I know. That's why I said 'even if ... ' > It is so scary to me. I didn't even know what a seizure was until I had > one. As far back as my living relatives (the ones I choice to stay in > contact with) can remember, no one other than me suffers from seizures. So you're unique in your circle :-) > > it's not as dangerous as travelling on the > >road! > > I do agree with you there. I am not allowed to drive right now (have to > go 6 months w/o a seizure), but I know from riding with family or the > little experience I have that people drive VERY crazy. Yes - and others too ... :-( > >Keep a sense of proportion, stick around here > >and > >share your experiences, everyone will benefit. > > Thats why I decided to post here. I thought it might help to talk with > other somewhat like me. And has it? > >And work at your studies > > My family tells me that too. If everything is straightened out with my > condition, I am planning on starting college in the fall. I was > accepted into my first choice college. This is one thing I really have > to look forward to. Congratulations! But there's no reason not to start even if you aren't 'straightened out' in the meantime. Since you don't know what's going to happen tomorrow you might as well live as though it's going to be as good as today. Mary Mary wrote: >So you're unique in your circle :-) Since I have been open about my seizures, I have met one or two who have them. They haven't been able to help me much though. I have learned a lot more here. It does suck being the only one in a whole family to have this disorder. No one knows what they really are or what to do. I get so frustrated when people ask me what a seizure is like (my condition has been spread through my whole school and practically the town). I can not answer that question totally, since I am not conscious during the "full" ones. I have to go by what others tell me has happened. >And has it? Posting and chatting with people here has helped me more than anything, seriously. At least people here know what I am talking about and can offer support. I am treated as sort-of "weird" by a lot of people I know, since they know little about my condition. Family and friends are still being nice and doing what they can, but is not the same as what people here can do. >Congratulations! But there's no reason not to >start even if you aren't 'straightened out' in the >meantime. Since you don't know what's going >to happen tomorrow you might as well live as >though it's going to be as good as today. I have decided not to start unless things are more under control. I won't chance it until then. Plus, if I get worse, who would hire me for a job or could I even deal with it not knowing what could happen? Plus, if it isn't under control by the time school starts, I won't be able to drive since I have to go at least six months without a seizure. That would force me to live on campus, since it wouldn't be fair to expect people to drive and pick me up at various times every day. I wouldn't want to put my burden on my roommate or the people who are in dorms near us. I doubt too many could handle my condition, especially when I have the "full" or "grand mal" seizures. I wouldn't do that to someone. Plus when it gets around campus, I will be treated like I am now and I don't want to go through it. > Whomever Cares: > [quoted text clipped - 52 lines] > > -Dawn Hi Dawn Sorry to hear what you've been through. It's not fun, I know. I've also never been diagnosed with epilepsy, although I've been having seizures for thirty years now. Unfortunately there are some who don't get much relief with medication and it may take some time to juggle the meds around to find the best combination for you. Over the last 30 years I've tried every combination of every drug available in my country (New Zealand) but still have up to 15 seizures each day. This isn't at all to say that this may be the case with you, simply that it's not easy to find the best combination of medications and not to be too disheartened if you still find you are having seizures. Life goes on and it is possible to live a very happy life despite having epilepsy. It's merely an extra burden we carry with us, but we just need to be strong and don't let it get the better of us. At times we feel tempted to sit back and feel a bit sorry for ourselves, but we have so much that others don't have. Most of the time no one even knows we have epilepsy and apart from a few safety precautions, there's very little that we need to change in our lives. You know what I did when I found that having epilepsy meant I couldn't drive? I took up sky-diving instead. It's a lot more fun and with all the safety gear they have (like parachutes that automatically open at a certain altitude if you haven't already opened it) it's also a lot safer than driving a car. It was just my way of saying "Okay, if I can't do that, then I'm gonna do this instead". Stick with it Dawn. I know it's not easy trying to get all the meds and such sorted out, but you will get there and hopefully you'll find a combination that keeps the seizures away for good. All the best to you and keep us informed how you're getting on. We all know what it's like being in your position, which means we all feel for you and have you in our thoughts. Cheers, Darryl. > At times we feel tempted to sit back and feel a bit sorry for > ourselves, but we have so much that others don't have. Most of the > time no one even knows we have epilepsy and apart from a few safety > precautions, there's very little that we need to change in our lives. Thank you, Darryl, for your wonderful post. I'm reading a.s.e. because a friend has recently had a couple of seizures, but she's not ready to delve into seizure disorder just yet. It's believed that hers are caused by a misfiring thyroid, so she's concentrating on learning about thyroid just now. I told her I'd read this group to glean as much information as I could. I've e-mailed her your post, because I think it's wonderful, especially the part about sky-diving. Your upbeat attitude will really help her, I think, because she's pretty down right now. Thanks to the whole group! Chakolate  SignatureThe real art of conversation is not only to say the right thing at the right place but to leave unsaid the wrong thing at the tempting moment. --Dorothy Nevill Hi - Dorothy is it? (Or is that the author of the quote?) I've just calculated that over the past 30 years, since I was eight years old, I've had over 100,000 (yes one hundred thousand) seizures. Tell your friend that even though she may be experiencing seizures - which we all know is not nice at all - it can be lived with and life does go on. We just take a few precautions and otherwise live as though nothing's wrong. Don't let it rule your life. A person with a seizure disorder - (or epilepsy to give it a name) - isn't an "epileptic". What I mean is, it doesn't define who one is, it's just something that's not working quite right in an otherwise perfectly normal person. Just like a person with a broken leg isn't defined by the fact that they have a broken leg and it isn't WHO they are, so it is with epilepsy. We needn't be ashamed of having seizures, just as we needn't be of a broken leg. Okay, so her brain has had a few sideways farts. Hopefully the docs will be able to get on top of it and it'll turn out to be a temporary thing. But if not - well, one can live with a misfiring brain, just like you can with a broken leg. It's an inconvenience but we learn ways to work around it. Please give your friend my warmest regards and let her know we're all hoping for the best for her. We'd love for you to stick around and keep us informed as to her progress. All the best. Darryl. -- To reply, change daryl to darryl in address > > At times we feel tempted to sit back and feel a bit sorry for > > ourselves, but we have so much that others don't have. Most of the [quoted text clipped - 21 lines] > right place but to leave unsaid the wrong thing at the tempting moment. > --Dorothy Nevill > Please give your friend my warmest regards and let her know we're all > hoping for the best for her. We'd love for you to stick around and > keep us informed as to her progress. Thanks - this is a very warm group. I'm pretty sure she'll be joining you herself when she feels ready. Chakolate SignatureThe real art of conversation is not only to say the right thing at the right place but to leave unsaid the wrong thing at the tempting moment. --Dorothy Nevill Darryl wrote: >I've also never been diagnosed with epilepsy, >although I've been having seizures for thirty >years now. I am sorry to hear this. Wow, that is a long time to deal with this. >Over the last 30 years I've tried every >combination of every drug available in my >country (New Zealand) but still have up to 15 >seizures each day. That has to suck. I am from the USA, just in case you wonder. Are all of yours total seizures or more like what my neurologist calls trances-mine seizures? >It's merely an extra burden we carry with us, >but we just need to be strong and don't let it >get the better of us. It feels like a very big burden to me. I have been very depressed since the first seizure and even more so when I was told I had a little chance of growing out of them. >Most of the time no one even knows we have >epilepsy and apart from a few safety >precautions, there's very little that we need to >change in our lives. After the one I had at school, in just a few days, everyone knew. It seems like I can't go anywhere where no one knows my condition. Somehow, it has even been spread to the college I am planning on attending next fall, since the staff there knows and I know my family nor I had told them yet. >You know what I did when I found that having >epilepsy meant I couldn't drive? I took up >sky-diving instead. You are not allowed to drive? My doctor/neurolofist keeps telling me if I could ever get to the point where medication is completely effective and I go six months without having another one, I will be allowed to drive again. I keep thinking I will never get to that poing, but I am trying to maintain hope, though it is tough. I could never do skydiving. I am terribly afraid of heights. Darryl wrote: >I've also never been diagnosed with epilepsy, >although I've been having seizures for thirty >years now. I am sorry to hear this. Wow, that is a long time to deal with this. I believe that most people don't 'grow out of it'. It's not so much dealing with it but living with it. Dawn, it's not the end of the world! It's not the end of YOUR world either. There are worse things. You might have been in an accident andfor instance, lost both your legs. There are worse conditions than having seizures. You get on with things as soon as the initial trauma is over. >It's merely an extra burden we carry with us, >but we just need to be strong and don't let it >get the better of us. Quite. It feels like a very big burden to me. I have been very depressed since the first seizure and even more so when I was told I had a little chance of growing out of them. That's understandable but you're an intelligent girl and you WILL learn to accept that you're not perfect (none of us is) and that your imperfection takes the form of seizures. So what? >Most of the time no one even knows we have >epilepsy and apart from a few safety >precautions, there's very little that we need to >change in our lives. After the one I had at school, in just a few days, everyone knew. It seems like I can't go anywhere where no one knows my condition. Somehow, it has even been spread to the college I am planning on attending next fall, since the staff there knows and I know my family nor I had told them yet. Well, this is an opportunity for you to give them the positive experience of your leading an otherwise normal life - perhaps even exceeding their achievements in other spheres. It doesn't have to be sky diving! It's only by people coming into contact with people who aren't like themselves that they can understand what's going on in the world. Just because people know about your seizures doesn't mean that they think any less of you - they might even admire you. >You know what I did when I found that having >epilepsy meant I couldn't drive? I took up >sky-diving instead. You are not allowed to drive? My doctor/neurolofist keeps telling me if I could ever get to the point where medication is completely effective and I go six months without having another one, I will be allowed to drive again. I keep thinking I will never get to that poing, but I am trying to maintain hope, though it is tough. I could never do skydiving. I am terribly afraid of heights. So am I. I get vertigo standing on the pattern on the carpet. Well of course that's pure hyperbole! But I was fifty before I went in an aeroplane. Spent my birthday on board, the champagne helped make the occasion memorable. And I had to go for two years before I could drive (in England). Being grounded was the very worst part of my condition, far worse than the craniotomy I had, far worse than the horrid medication which turned me into a temporary zombie. But oh, the joy the first time I got behind the wheel again! It was as though the intervening time hadn't happened :-) We in this ng are all behind you, Dawn. We understand about life with seizures. Our opinions should count for more than those who don't. You can spread the word in your circle of friends! Stay with us and keep us in touch with your progress. Hugs, Mary > >You know what I did when I found that having > >epilepsy meant I couldn't drive? I took up [quoted text clipped - 8 lines] > > Mary No, I'm not allowed to drive since I have CP seizures every day. I'm not sure how long I need to go here in New Zealand seizure free before I can get my license back, but I'm pretty sure it's longer than one day :-) I used to drive...when first I went for my license they didn't ask if I have epilepsy, so I didn't tell them. Dumb thing to do. Whenever I had a seizure I always had at least 20 seconds (and up to half hour) warning aura before, so I was able to pull over and stop. But I didn't allow for the fact that epilepsy has a mind of it's own and changes without giving notice. So one day I was driving along and a seizure hit with no warning at all and I left the road and hit a pedestrian. He's now dead as he couldn't live with the injuries sustained in the accident and killed himself. That's not easy to live with when you're the one who caused it. That's why I get very upset when I see people say that they drive a car even though they have seizures, because they feel they have enough control to be able to avoid that happening to them. We have to remember that no one has control of their seizures. They change as and when they feel like it. Darryl. -- To reply, change daryl to darryl in address > No, I'm not allowed to drive since I have CP seizures every day. I'm not > sure how long I need to go here in New Zealand seizure free before I can get [quoted text clipped - 8 lines] > the injuries sustained in the accident and killed himself. That's not easy > to live with when you're the one who caused it. That's awful, Darryl, I'm so sorry ... > That's why I get very upset when I see people say that they drive a car even > though they have seizures, because they feel they have enough control to be > able to avoid that happening to them. We have to remember that no one has > control of their seizures. They change as and when they feel like it. You're absolutely right. Hugs, Mary > Darryl. > -- [quoted text clipped - 4 lines] > Checked by AVG anti-virus system (http://www.grisoft.com). > Version: 6.0.583 / Virus Database: 369 - Release Date: 10/02/2004 > No, I'm not allowed to drive since I have CP seizures every day. I'm not > sure how long I need to go here in New Zealand seizure free before I can get [quoted text clipped - 14 lines] > > Darryl. Thanks for this post - it was very difficult to read... I've had brief minor "jerks-'n'-jitters" occasionally for 30 years, and never thought much of them. I was (and am) always conscious, and was able to control a car (or do most anything else) while having them. About four months ago, they got much worse in terms of frequency, and other forms were added (sudden "limp" episodes, and difficulty moving "cleanly"). Soon after, I stopped driving completely (about 3+ months ago), and from what you've said, I guess it is possible I may eventually have an unconscious event (ugh!). As for changes, the moving-"cleanly" stuff has reduced, but speech problems have recently become much worse, as have the "jitters". Dunno where to go from here.... Good luck! -- DR > Whomever Cares: > [quoted text clipped - 52 lines] > > -Dawn "MF's" and "D_n_P's" posts were wonderful for me, too. Thanks! I've had "jerks-'n'-jitters" in moderate amounts for 30 years, but since they were not much of a problem, I didn't seek help (I just lived with them, since they never caused me to be unconscious and I always had some control [driving was not a problem]). At times of VERY high stress, I would rapidly lose muscle-strength and have difficulty moving for a few hours, but this happened very rarely. All this changed about four months ago, with multiple episodes of "j-'n'-j" a day [with five episodes of major all-over jerking one morning last week] + "limps" as many as a dozen times a day + "freezes" (not common) + (in the last month) serious speech problems (babbling unintended nonsense, losing the ability to form words - with sentences dissolving into nonsense until I can figure out how to say any word at all [this has been the hardest to take of all this "nonsense"!]) - and all this happens daily (I can't be outside alone, or drive, and I can do little since my concentration ability is often low). Even so, I was not depressed until on Topamax at very low dosage (unusual response - and getting off it was not "fun"...), and I have no solid diagnosis, leaving me in an awkward "limbo" in terms of work, income, life, prognosis, etc. Even so, I enjoy seeing things, sometimes hearing music (when I can concentrate enough to listen), the taste of food - and these things seem a bit heightened in intensity during the many "episodes" during most of which I can still go out, walk, eat in restaurants (so I look and sound like a "village idiot" sometimes - who cares? [though I can't go to concerts, plays, movies, etc. due to the babbling and jerking, alas...]). Many of my friends are in far worse shape with physical ailments that cause pain/death, so I feel fairly lucky by comparison since this stuff I have is just very awkward (but I can still write well enough to express my "complaints" in this and the alt-support.sleep-disorder NGs [+ my usual comments in the rec.video and rec.photo NGs...;-]). Good luck! -- DR David wrote: >They never caused me to be unconscious and >I always had some control [driving was not a >problem]). At times of VERY high stress, I >would rapidly lose muscle-strength and have >difficulty moving for a few hours, but this >happened very rarely. I think I have more often had what you say you have than I have had of the the unconscious, full seizures. Since August, I have had about 10 seizures total. I have what my doctors calls "Trances" (which sounds somewhat like you are talking about) a few times a week and worse if I am stressed or angry. They cause me not be able to move while it is happening, but I do know what is going on. I usually kind-of feel these coming on slightly before they occur. Being unconscious sucks. I never had been until I started havng the "full" seizures. I hate not knowing what is happening to me. I remember very few things during this time. It will only be bits and pieces of what people are saying and knowing I am having a very hard time breathing. After I come out of these, I am very light-headed and dizzy, feel like I have no strength, and can't move very well for about ten minutes or so. I hardly ever feel these kind coming on. I think I have had just one when I felt "funny" a little while before. You are not missing anything fun by not having this form of seizure. > David wrote: [...] > >They never caused me to be unconscious and > >I always had some control [driving was not a > >problem]). At times of VERY high stress, I > >would rapidly lose muscle-strength and have > >difficulty moving for a few hours, but this > >happened very rarely. [...] > I think I have more often had what you say you have than I have had of > the the unconscious, full seizures. Since August, I have had about 10 [quoted text clipped - 3 lines] > happening, but I do know what is going on. I usually kind-of feel these > coming on slightly before they occur. I now may have these episodes of either being limp (no muscle strength, unable to move) or "freezing" (still, or with most muscles jittering - much less common) several times a day (sometimes many, like a dozen/day). These may last seconds or up to four hours (both are rare - most are 5-20 minutes or so). I'm also aware, but may look like I'm asleep - and I can often talk during these. They sound similar to yours - if you find out about the cause, please let me know (and, likewise...;-). "Cataplexy" doesn't quite fit, but it's fairly close. I don't know if this is useful (but it is scary reading!), but look at http://www.arts.uwaterloo.ca/~acheyne/S_P.html for another possibility. BTW, I used to get my "5-second warning" for these, but I no longer do - I just lose strength over a 10-20 second period and collapse slowly, or I just stop moving in place. For the first, nothing much gets me out of it but time; for the second, a slight nudge immediately gets me going again. Occurrences are random, though I also often have these while eating or petting a cat... > Being unconscious sucks. I never had been until I started havng the > "full" seizures. I hate not knowing what is happening to me. I [quoted text clipped - 5 lines] > have had just one when I felt "funny" a little while before. You are > not missing anything fun by not having this form of seizure. Actually, I'm "there" when having "grand-mal"-looking events (but I'm conscious) - it is how I get my excercise! ;-) These are much rarer than "jitters" for me (and jitters can last for hours), but I had five of these between 6 and 7 AM a few days ago (with breaks of jittering in between). I don't get "auras" for these, either. I'm lucky I do not lose consciousness - but I also tend to stop breathing during them. I don't know what to call these events, though - but for you, these sound like "grand mal" seizures... SignatureDR > Whomever Cares: *** We all do, that's why we're around. I just did a reply to an earlier post of yours and included a First Aid www address describing Seizure Types by what they 'look like'. Check the symptoms, for example of Absence or Simple Partial type seizures, compared to some of the stuff below. The other seizures often end in Loss of Consciousness, where we drop on the spot. Since you didn't seem to have those, that's why I suggested one of the first 2 listed above. Several of the Medications, and some of the seizures can produce Blurred Vision or Dizzy Drunken sensation as the doses are increased. IF you had just started medications at that point, your body was still getting used to it, OR the dose might have been too high for your Metabolizm or the rate your body removed the dosage. If the problems cleared with no changes, you were getting used to a raised dose level. / > I have only been having seizures (total or whatever they are called. > the doctor calls them full body) since actually August (correction to [quoted text clipped - 5 lines] > in one day (one at night before bed, then six early in the morning the > next day before noon). *** G. You could keep a Diary of when they happen, and if anything different happened around that time, Diet changes, Having a Cold, etc. Some of the Ladies (please) can write you about Lady's Stuff, since I had read too that there are things that can trigger some types of seizures in SOME ladies, at about that frequency too. (Men don't tend to have hormone variations during the month, so we're not as susceptible to that type of trigger. <Our levels remain higher all the time.> :-< ) / > I have been having the trances (where I stare off and space out for a > few minutes-very shaky and light-headed-seizures trying to occur by what > my neurologist says) since before last January (2003). **G** Check my earlier note on the group-> I mention Absence Seizures or Simple Partial type on the First aid chart./ I never knew really what they were until I had the first full seizure. **G* What happened at the First full seizure? Did you lose consciousness? What made you realize it was a seizure? I never had > them checked out, because I did not think that they were anything to > worry about. I actually figured that maybe (since I had a few people-an > aunt and an uncle) I had just borderline low blood sugar. (Not been > proven yet.) I have had these up to several times per day and spaced > out for a week or two. G** We also have people around who have to watch their Blood Sugar etc. They can give you better information on this from their own experiences wrt. its effects on Seizures and Triggers. / > After the second full seizure and before the six seizure "marathon" as I > call it, I was recommended to a neurologist by my family doctor. I have > been through 2 1-hr EEGs, 1 48-hr EEG, an EKG, a CT scan, an MRI, and a > Vestibulator (sp?) test. The only thing my doctor concluded was that I > had a chemical imbalance in the right side of my brain, but he doesn't > know why the imbalance had occurred now. *** How did he see a Chemical Imbalance there? An MRI, for one, sees 'marks' down to fractions of a Millimetre inside the Brain, that aren't technically Chemical... Usually a chemical imbalance is found in Bloodwork?? (I don't know what/haven't had the last test you listed above (Vestibulator). I had all the others, and the Rt. Temporal Lobe damage was visible on the MRI, as was the EEG (for ME) back in 1979 when I had Encephalitis. Mine are the reverse of yours, the Insult happened first in 1979, the seizures didn't start until 1993. Yes, there are some people who seem to Grow Out of some types of seizures. They might still be around here, but might need to know more about the seizue 'name' or area of the brain where the Dr. thinks the seizures start from (the Seizure Focus). I was also told that some > people like me can grow out of the imbalance, but it was doubtful with > me since I had so many seizures in a short span of time. This was even [quoted text clipped - 14 lines] > lower the Keppra and let me have time to get used to the higher mg of > Dilantin. I did get over the vision problem. *** See comments I made earlier and another post, about adjusting to new med. levels and some side effects, either of some of the szr. types And some of the Medications. Some of the stuff some of us use, they wait 1 to 3 weeks after a Dose change, to do the Bloodwork that would see if the level is what the Target was the Neuro wanted to reach. Since we're each unique, wrt. metabolism, boy/girl, body weight, etc. it can sometimes take some tinkering to get a fine-tuned level. It's *worth it. IF you get to a Level that works you might go Years or longer without a Dose change. (*Last dose change I had to Frisium or Tegretol CR for Complex Partial Seizures was 1996 -- 8 years and counting.) G./ > The part that worries me is that I still have the trances ever so often. > The medicine isn't stopping them. Is it normal for the medicine to just [quoted text clipped - 4 lines] > scary to me. > -Dawn Dilantin (for one) is a little "Flaky" wrt Control etc. Some people have used it here for Years and years without problems. *I* had too many 'breakthrough seizures' (my word) where I could be walking down the street Fine, and next be lying by the side of the road or wake up in hospital, if someone panicked and called an Ambulance. I was told it's often First Prescribed for some of our Common seizure types since it's one of the oldest Anti Ep. Drugs (AEDs), so the Research costs were recovered already back in the 1930s, and it has been studied longer. In my case I had to move off it, and spent the next ~2-3 years moving to one pill, increasing, decreasing and adding a second pill and Finally getting control. It might seem Irritating since they can't 'fix us' faster, but we're a fairly complicated little piece of 'machinery'.. Don't give up on them. We're each unique and we need a Unique solution that they'll find if we give them time. There's only one Picasso, one Van Gogh, and one 'Dawn'.... They'll find something that works for your particular case too. In the meantime, we're all around here. Hey, did you ever see a 30 Kg. Chocolate heart? I don't know how we're going to get this thing finished before it's past its 'Best Before' Date, but if we all chip in maybe we can manage it... :- ) . We have an alternate one for Howdy and some of the others if they want - it's only 20 Kg (44 Pounds), but they're all fresh. G. (well Howdy is anyway.) / Gaross wrote: >The other seizures often end in Loss of >Consciousness, where we drop on the spot. These are the seizures I were talking about in the post. They were the ones I spent more time talking about and were the ones that put me in the hospital. The minor (not really, but you know what I mean) ones occur more frequently usually. >What happened at the First full seizure? Did >you lose consciousness? What made you >realize it was a seizure? The second one was when I realized what had happened the first time. I did lose consciousness. I didn't know what had happened until my teacher (senior english-i'm in h.s.) told me. He knew since his mom had them. Since I'm out, I barely remember anything from the period of time I was out. I can remember some of what people say (can not recognize voices though) and can remember breathing very hard that it actually hurts. >How did he see a Chemical Imbalance there? He didn't tell me which test (s) drawed him to that conclusion, but that is what he told me was wrong. He did have blood-work run before all those test, but he didn't say he found it there. >had too many 'breakthrough seizures' (my >word) where I could be walking down the >street Fine, and next be lying by the side of >the road or wake up in hospital, if someone >panicked and called an Ambulance. These were the ones I was more talkiing about when I talked about full seizures. That is just what my doctor calls them. Normally I am not out over 5 minutes. I am more scared that medicine doesn't totally control them and I freak out going to school, afraid I will have a full/breakthrough seizure. I can deal with the little ones.
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