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#1
11-14-2007, 12:26 PM
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#2
11-14-2007, 02:10 PM
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| I totally know how you feel. IT DOES SUCK!! You can be doing just fine and then it just happens and you have no control over it. I think it'll make us all stronger people though. 3 1/2 weeks without a seizure is still progress though and that's awesome!!! Hang in there and vent anytime, it's good therapy.     |
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#3
11-14-2007, 03:23 PM
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| Hi Tees It does get annoying to start having seizures again after thinking that you have them under control. Do you write your seizures down in a seizure diary? Also do you have to make an appt to go see your GP or neurologist? Even though you may not think the seizures aren't that bad you are having them reguarly so maybe the neurologist might have to alter your meds. |
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#4
11-14-2007, 03:28 PM
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| Knowing again today exactly how you are feeling. I was all smug about thinking I had "this" figured out and BAM got a call Rebecca had another seizure today. I'm thinking it is the increase in Trileptal. Happened a lot the last time we increased, then quiet... Thinkin, thinkin, thinkin.. what is different. Hang in there Tees. |
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#5
11-14-2007, 08:24 PM
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| Originally Posted by TeeTees  :
Originally Posted by TeeTees :
I hope that brought you a smile.
__________________ Check out this chart of alternative epilepsy treatments and this page on EEG Neurofeedback |
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#6
11-14-2007, 09:07 PM
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| Originally Posted by TeeTees :
I know exactly the feeling of being there but not there .. it's called "depersonalization" or some Epileptologists call it "dissociation". But I call it 100% annoying as HECK! It's common with temporal lobe epilepsy / FLE and Complex Partials and personally I'd love to depersonalize and dissociate them all! And here's some links that would help you understand it better: (Note: Simple Partials fall into this field too) eMed - TLE eMed - FLE I'm curious ... I have a question for you: Do you ever feel like you're separating from your body and you feel like you have to go and "get yourself" to keep yourself attached? (Maybe I'm not explaining this very well) It's really super-weird; it's different from being there but not there, nor is it "rising experience" either (I get those too). I just feel like my body is separating from myself and I have to keep myself together - almost like the movie "Peter Pan" - where Peter is having so sew his shadow back on so he doesn't loose it? (Maybe that's a horrible way to describe it) I'm not good with explaining this one and I have a difficult time trying to tell my neurologist and epileptologist this one. But I've had this one all in my life. It's too eerie, strange, but eerie. ((((((((( HUGS ))))))))))) TALK TO YOUR DOCTOR and schedule for a follow-up appointment and go over everything with the Doctor.
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#7
11-14-2007, 09:26 PM
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| Originally Posted by RobinN :
I just did a google on trileptal side effects and you may want to check it out. "Hyponatremia, or "water poisoning", is a side effect of anti-convulsant and commonly used bipolarity drug Trileptal. The condition, in which excess blood plasma dilutes the salt content of blood, can decrease organ function and endanger the lives of patients taking Trileptal." http://trileptal.legalview.com/58817/ That came up early in the search. Here's some info on hyponatremia: Postgraduate Medicine: Hyponatremia and hypernatremiaEarly manifestations of hyponatremia include anorexia, nausea, lethargy, and apathy. More advanced symptoms include disorientation, agitation, seizures, ... www.postgradmed.com/issues/2000/05_00/fall.htm This article above discusses what testing can help determine if this is a problem for her.
__________________ Zoe |
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#8
11-14-2007, 10:38 PM
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| Robin: You may want to check this out too, Scroll about half way down and the next one is the FDA's Website on Trileptal. TRILEPTAL  FDA - MED SAFETY WATCH on TRILEPTAL Updated FDA on TRILEPTAL
__________________ Last edited by brain; 11-14-2007 at 10:58 PM. Reason: added updated FDA on Trileptal |
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#10
11-15-2007, 06:30 AM
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| Brain, WOW! what you said= (Do you ever feel like you're separating from your body and you feel like you have to go and "get yourself" to keep yourself attached? (Maybe I'm not explaining this very well) It's really super-weird; it's different from being there but not there, nor is it "rising experience" either (I get those too). I just feel like my body is separating from myself and I have to keep myself together - almost like the movie "Peter Pan" - where Peter is having so sew his shadow back on so he doesn't loose it? (Maybe that's a horrible way to describe it) I'm not good with explaining this one and I have a difficult time trying to tell my neurologist and epileptologist this one. But I've had this one all in my life. It's too eerie, strange, but eerie.) thats pretty much how i explained my seizures to my neurologist.... one time i was at the pc and i felt like spirit(sounds weird i know) rushing out of the top of my head and everything went white it was really scary i felt like i was going to black out big time.....that time i cant say for sure but it lasted more than a min.. i had to try and calm myself breathing very slowly helped a little... i rember when it happened extream fear and panic set in it freaked me out.... |
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#12
11-15-2007, 06:37 AM
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| Thanks for all the kind responses AGAIN guys. You really are a bunch of diamonds that I feel soooo lucky to have hooked up with. I was still a li'l weary when I awoke this morning, and am feeling 'slightly' tired at the mo, but went to work anyhow (I find if I stayed home and sat around doing nothing, that I'd probably have had another seizure by now - my mind kinda needs to be active at all times). Sorry for the rant last night, I just felt soooo low, I woulda been happy if my life had ended - at least I wouldn't have been having to put up with all this crap......however, having started a 'new' day I'm soooo glad it hasn't ended. Brain : as per the 'separation from body' experience. I can't really say that I've had that (yet!). I just get a strong aura with an electrical taste (like the bottom of a battery), which then makes me aware that I MAY have a seizure, which in turn gives me time to prepare myself for the storm ahead. Thanks for the links though - they really do help me understand what's going on a bit more, and also help me realise that I'm not such a 'freak' as I may believe at times. xx I'm currently sitting here in work at the moment, in what I call 'screen-saver' mode.....it's where I 'appear' to be working hard, but really I'm just chillin' out giving myself a chance to recover. Tonight is another usual night where I go down the gym, but I think I'm gonna have to sit out on this workout. Recovery first, workout second, in my priorities of life I think. I think the cause of my bad fortnight is the rubbish I've been going through lately in my job. I work in Accounts, and am responsible for getting Suppliers paid on time. I was told AFTER I had ran a payment proposal that we are NOT to pay anyone until Jan 2008 !!! So, I went mad at my boss telling him it was completely unethical, and against company policies, blah, blah, blah......so I've been going through a bit of a stressful time at the moment. The funny thing is though - when I'm going THROUGH a stressful period, the seizure's are controlled....it's when I've gone PAST the stressful period (and recovering) that the seizure's usually rear their ugly heads. Thanks again Guys - you're all amazing people, and if anyone tells you any different....send 'em over to me !!!.....I'll get Benji to lick 'em to death !! (haha) |
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#13
11-15-2007, 09:29 AM
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| I am glad that you chose "The New Day" option button too. Nothing like a new perspective to make a little more sense. Thinking about your stressful periods being seizure free, and not when the storm is over. Have you ever noticed how you are well during the busy times, and when your body has some down time you tend to get sick. That happens to me. I think the body is a marvelous machine that when it functions properly is incredible. The immune system charges into gear when it is necessary to withstand quite a lot of demands. Then there is a healing period that when there are no reserves I believe you see a malfunction. Seems to me the ideal would be to not run the well empty. You have quite a challenge ahead with your boss. Take time out when you need to. There are a lot of reasons to believe that you are not a "freak" |
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#14
11-15-2007, 12:13 PM
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| Originally Posted by angel :
No - that's not it. No blackouts or anything like that, no panic, anxiety, or anything. It's like you're drifting away from your body (for want of better description). It only lasts maybe 3-5 seconds, and then it's gone. It does not last long at all. But it's just too freaking friggin' downright flat- out EERIE! I just have a hard time explaining it or describing it. The last epileptologist I saw associated it with the rising experience. But I know what the rising experiences are. And that isn't it. My son and ex a couple of times caught me in this type of mode would state my eyes would be in a "wild look" fully dilated for just a few seconds and my expression would be blank but I would be alert and aware of what's going on, but after it was over. I just had to go to sleep immediately and would sleep for a extreme long period of time. It's hard to state if it was a seizure or an aura, because it happened so quick, so fast, bang, bang, bang, and it was over. These USED to be isolated and sporadic but I've been getting them more frequent since 1995? I used to get a lot of them when I was a child and teen then waned off, then it would happen like once every 2-4 years; and out of nowhere, it seemed to happen 2-3 times a month. By 2000, I was getting them like 11 or so times a month, but it was so quick. Today, there's no way of knowing, but the 1st epileptologist I saw caught it, not once, but several times. His Nurse caught it and his Receptionist caught it. The Hospital EEG Tech caught it. My son and his Buddies have caught it several times and it seems to have gotten worse. Instead of the "wild look" in the eyes only, they now rock violently. But I don't know it. I only sense what I'm trying to state. But everyone else sees it all differently and my behavior is fine, except I do stagger if I am walking during that brief few seconds. But the urge to sleep - I have to sleep and of course I get the headache. But is it or was it a seizure? Or an aura? Like I said the last epileptologist (the 2nd one) said it was an aura. I just don't know. Auras don't make me sleep or give me headaches like after having a seizures. That's why I get so frustrated that I'm not clarifying myself clearly.
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#15
11-15-2007, 12:20 PM
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| Originally Posted by TeeTees :
(((((((((((((((( TT )))))))))))))))))) No problem! That's what we're here for! I experience taste issues too - but not battery acid though: just really odd taste - and mostly it's sour - and I HATE PICKLES! I also SMELL IT! *GAG* My sense of taste becomes really distorted, but primarily it's pickles. But as for Smell - it's weird - depending on what the seizure is going to come it's either electrical burning or pickles (*gag again*), or even worse, gasoline / kerosene - and why those chemicals, I have no earthly idea! Of all the things I have to "smell" in an aura - I wish we could have an "multiple option selection" or a "choice" - and we get stuck with the hideous gunk! Glad it's all a NEW DAY FOR YOU!  And let's hope it continues this way! 
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#16
11-15-2007, 12:38 PM
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| Originally Posted by RobinN :
I've always had that "I'm ready for a fight" seizure free period, and then the "oh bugger, here we go" after the storm effect. I also find that silence is a killer for me too...I need to have something 'happening' around me, even if it's just the radio playing, to keep me away from the 'silent zone', cuz as soon as I'm in it - zap !...I'm off again !! My life is kinda based around board games....every toss off the dice relates to where I go next, but as soon as I hit a seizure it's back to square one. So a New Day it is....at least I can deal with it that way |
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#18
11-15-2007, 01:27 PM
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| Hi All, It sounds like a tough week for all of us. Thanks for the info on Trileptal Zoe and Sharon. Everything helps right now. Steph is still recovering from her seizure on Tuesday. We too had to press the "New Day" button. I'm a little nervous about her medication increase but what else can we do? Two seizures in one week was a little much for her. Second b-ball game tonight she is missing but she just told me that she was dressing anyway even if she had to sit this one out on the bench. I feel she is so much better at this than I am. It is breaking my heart. Hang in there TeeTees! We are praying for you! Robin, I hope Rebecca is feeling better today. Hugs and prayers for everyone! Take Care, Kim |
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#20
11-15-2007, 08:08 PM
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| Originally Posted by angel :
NO. The Neuros and an epileptologist said it wasn't, because of what I was describing it. They did ask me additional questions and when I answered them "NO", it wasn't an "Out of Body" experience. So they didn't know what it was. But the 2nd epileptologist I saw simply was very blunt like he's heard it before; and called it "rising", an aura. But I have my reservations about that, unless it was a very fast aura, and a very fast seizure - like someone put something on "super-mega speed fast forward".
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Grrrrr.....I'm fed up ! 
....Thanks Bernard, I needed that. It's been a looooong day
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