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Medical Forum / Diseases and Disorders / Epilepsy / July 2004good sign?
hello folks, here comes a little question about change of seizures: i used to have secondary geralized seizures. that was when i was on carmazepin (1200/day) plus keppra (1000/day). now i had a change in medication - carbamezepin (1200/day) plus lamictal (200/day). there were only few geralized seizures in the beginning when i was not yet on level with the lamictal. luckily they stopped with the new medication :-). but... now other strange things happen. it starts with an odd feeling in my left ear, like somebody blowing into it. then a curious feeling in my stomach starts. there is a tickling in my face, moving, very slowly, down to the stomach. during the whole time my arms and legs get heavier and heavier. the world occurs in a strange (quite interesting, but at the same time spooky) way, weird perspectives and colors. everything looks and feels exeptional strange. the whole thing lasts for about 30-60 min. so, i assume these are a seizures, but if so, they are not the kind i have ever had before. is this a good sign? i personally feel it as an advance, because during these seizures i might not be fully conscious - but at least i have an idea of what is going on, even it is a weird one. i would be interested in what you think about it. thanks a lot raist > hello folks, > [quoted text clipped - 26 lines] > > raist Umm, no real idea sorry. But it sounds like something I experience with my wife once in a while ;-) Darryl. > hello folks, > [quoted text clipped - 25 lines] > thanks a lot > raist Hi. It *sounds like you aren't having any 'drop down' full seizures like on the old mix, but might be still having the odd Minor (Simple Partial) Aura? I don't get the same ones you have but get more minor ones from time to time, but not enough to disrupt what I'm doing. If you have a Regular appointment with your Neuro, you might want to write down some of above (or print it out :-< ), in case there is a Minor change they could suggest. Before I was controlled with Tegretol /Frisium mix, sometimes we would just add half a tablet on alternate days or each night of one of my pills. And it was often not the one I would have picked if *I had 'self-prescribed' -- e.g. it might be my Night dose we increased to reduce effects I got between Noon and Dinnertime, as opposed to the AM dose. You *sound like you're a lot closer to full control than before and That can only make you feel good too. When I used to have sporadic seizures, I'd sometimes feel it was somehow 'my fault' or something *I had done that caused that one seizure, and it was later that I found out about the Grapefruit and Tegretol (discussed earlier elsewhere), or just a floating 'blood level' of one of my pills that happened 'here' but then wouldn't repeat 'enough' so we might change a pill mix. Did you see (too) the earlier posts about taking the Tegretol with Food or Juice? I don't know if Keppra is like that too anyway (we have other Keppra experts around somewhere), but the Food or Juice with my Controlled Release version seems to prevent stomach upset and lets the dose merge more gradually and get observed O.K. I hope your progress continues to improve for you. It sounds like you're getting closer to a level of better control. The Better control (for me) boosted confidence too, and I didn't worry about 'was this the day I'm due for a Surprise Seizure' after 3 months of control.... They got further and further apart, then I realized I hadn't had one for 6, 12 months, and now longer. Good luck with this. G./ > You *sound like you're a lot closer to full control than before and > That can only make you feel good too. When I used to have sporadic [quoted text clipped - 8 lines] > or Juice with my Controlled Release version seems to prevent stomach > upset and lets the dose merge more gradually and get observed O.K. One of the posts gaross is referring too: (http://groups.google.nl/groups?hl=nl&lr=&ie=UTF-8&threadm=cabbko%247v%241%40read er11.wxs.nl&rnum=10&prev=/groups%3Fq%3DMarco%2Bgroup:alt.support.epilepsy%26hl%3 Dnl%26lr%3D%26ie%3DUTF-8%26group%3Dalt.support.epilepsy%26selm%3Dcabbko%25247v%2 5241%2540reader11.wxs.nl%26rnum%3D10) NOTE: please pute everything between '(' and ')' in your internet browser.  SignatureTake care. Bye, Marco > > You *sound like you're a lot closer to full control than before and > > That can only make you feel good too. When I used to have sporadic [quoted text clipped - 10 lines] > > One of the posts gaross is referring too: (http://groups.google.nl/groups?hl=nl&lr=&ie=UTF-8&threadm=cabbko%247v%241%4 0reader11.wxs.nl&rnum=10&prev=/groups%3Fq%3DMarco%2Bgroup:alt.support.epilep sy%26hl%3Dnl%26lr%3D%26ie%3DUTF-8%26group%3Dalt.support.epilepsy%26selm%3Dca bbko%25247v%25241%2540reader11.wxs.nl%26rnum%3D10) > NOTE: please pute everything between '(' and ')' in your internet browser. > Take care. > Bye, > Marco My post (and older message that I referred to) was contained 100% within my Reply. I don't know what Google does, but Windows puts each reply (if I left them all in my post) indented with > at first level, >> if content was someone 2 levels up (left in place by a poster), and >>> etc with each level. Do you have option on your Browser to 'Sort messages by Message Thread' ?? On Windows it's under View?, then Sort by, then a Miniature diagram that looks like a Horizontal Bar Graph. That groups msgs. together with same subject line. /G. > My post (and older message that I referred to) was contained 100% > within my Reply. I don't know what Google does, but Windows puts [quoted text clipped - 6 lines] > Miniature diagram that looks like a Horizontal Bar Graph. That > groups msgs. together with same subject line. /G. Hi Gaross, I do not know exactly what you are talking about but I use Windows XP SP2 (beta) / Outlook Express + OE Quote Fix (http://home.in.tum.de/~jain/software/oe-quotefix/). So, if there are >> or > then it does not come from Windows, but from this addin. Outlook Express does not put the autosignature below the message but at the top. The fix addon really fixes that but I guess it does some more tricks with my message so that it gets garbled a bit? An an internet browser I have IE + Avant Browser which does some blocking on flashed animiations/pictures/pop ups, etc -hell it does a lot of more then that which saves me a lot of spyware, etc. :-) You may want to try it as it is freeware. Cheers man. SignatureTake care. Bye, Marco > > You *sound like you're a lot closer to full control than before and > > That can only make you feel good too. When I used to have sporadic [quoted text clipped - 10 lines] > > One of the posts gaross is referring too: (http://groups.google.nl/groups?hl=nl&lr=&ie=UTF-8&threadm=cabbko%247v%241%4 0reader11.wxs.nl&rnum=10&prev=/groups%3Fq%3DMarco%2Bgroup:alt.support.epilep sy%26hl%3Dnl%26lr%3D%26ie%3DUTF-8%26group%3Dalt.support.epilepsy%26selm%3Dca bbko%25247v%25241%2540reader11.wxs.nl%26rnum%3D10) > NOTE: please pute everything between '(' and ')' in your internet browser. > Take care. > Bye, > Marco IT Looked like This on Windows --> > hello folks, > here comes a little question about change of seizures: [quoted text clipped - 24 lines] > thanks a lot > raist Hi. It *sounds like you aren't having any 'drop down' full seizures like on the old mix, but might be still having the odd Minor (Simple Partial) Aura? I don't get the same ones you have but get more minor ones from time to time, but not enough to disrupt what I'm doing. If you have a Regular appointment with your Neuro, you might want to write down some of above (or print it out :-< ), in case there is a Minor change they could suggest. Before I was controlled with Tegretol /Frisium mix, sometimes we would just add half a tablet on alternate days or each night of one of my pills. And it was often not the one I would have picked if *I had 'self-prescribed' -- e.g. it might be my Night dose we increased to reduce effects I got between Noon and Dinnertime, as opposed to the AM dose. You *sound like you're a lot closer to full control than before and That can only make you feel good too. When I used to have sporadic seizures, I'd sometimes feel it was somehow 'my fault' or something *I had done that caused that one seizure, and it was later that I found out about the Grapefruit and Tegretol (discussed earlier elsewhere), or just a floating 'blood level' of one of my pills that happened 'here' but then wouldn't repeat 'enough' so we might change a pill mix. Did you see (too) the earlier posts about taking the Tegretol with Food or Juice? I don't know if Keppra is like that too anyway (we have other Keppra experts around somewhere), but the Food or Juice with my Controlled Release version seems to prevent stomach upset and lets the dose merge more gradually and get observed O.K. I hope your progress continues to improve for you. It sounds like you're getting closer to a level of better control. The Better control (for me) boosted confidence too, and I didn't worry about 'was this the day I'm due for a Surprise Seizure' after 3 months of control.... They got further and further apart, then I realized I hadn't had one for 6, 12 months, and now longer. Good luck with this. G./ >>> You *sound like you're a lot closer to full control than before and >>> That can only make you feel good too. When I used to have sporadic [quoted text clipped - 84 lines] > and further apart, then I realized I hadn't had one for 6, 12 months, and > now longer. Good luck with this. G./ Hello, I am now using Dialog as a newsreader as somebody in this newsgroup recommended that to (http://www.40tude.com/dialog/). Don't know if it looks better now but hopefully it is. Cheers maan! SignatureTake care. Bye, Marco Your latest post looks O.K. now, and is at bottom here. G./ (http://groups.google.nl/groups?hl=nl&lr=&ie=UTF-8&threadm=cabbko%247v%241%4 0reader11.wxs.nl&rnum=10&prev=/groups%3Fq%3DMarco%2Bgroup:alt.support.epilep sy%26hl%3Dnl%26lr%3D%26ie%3DUTF-8%26group%3Dalt.support.epilepsy%26selm%3Dca > > bbko%25247v%25241%2540reader11.wxs.nl%26rnum%3D10) > >> [quoted text clipped - 13 lines] > Bye, > Marco > Hello, > [quoted text clipped - 4 lines] > > Cheers maan! And this is a reply to that message. PS: Sorry folks for these test messages...this is the last time I will bug you with it. SignatureTake care. Bye, Marco It sounds like a type of seizure or aura to me. I get things like that too, sometimes developing into CPs or GMs, sometimes not. It can only be an improvement if you're only getting those now instead of the generalized ones! But your meds still might need some adjustment - better mention it to your doctor. Good luck! > hello folks, > [quoted text clipped - 26 lines] > > raist |
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