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Help- seizure disorder or not???
Mon, 12/20/2004 - 10:51Comments
RE: RE: Help- seizure disorder or not???
Submitted by leslieannmarin on Mon, 2004-12-13 - 09:12
Lee: Thank you for your insight and guidance. I truly appreciate it. Please see my posting to Bob.
Thanks again :-)))
Lee: Thank you for your insight and guidance. I truly appreciate it. Please see my posting to Bob.
Thanks again :-)))
RE: RE: RE: Help- seizure disorder or not???
Submitted by LeeMc on Tue, 2004-12-14 - 20:16
Dear Leslie Ann and Bob,
It's my turn to thank you!!!! It is easy to talk and advise when you are on the "controlled" side of things - and have been for a while. It is another thing to get yourself out of the denial that things are going to remain okay and to decide to put yourself back through that ugly and scary time of your life - just to find out if things can get better............I am about to do that. I have to be honest - I am scared to death.
Don't know where I am going yet but it is long past time. 30 years ago they made a guess - not a diagosis. I got lucky that the second set of meds has worked all this time. Maybe the neuro I went to see last September was the one that made me really think about it when he asked me "why are you here if your meds were working".......I had to ask myself if I really did want to mess with anything or just coast along the way I was going - he didn't seem to care one way or another.
Well it had been 30 years since I had seen a neuro and I figured it was time I did. It was time to find out how much had changed - with medicine and with me! If he wasn't interested in doing that for me or with me - then I will go elsewhere!
I am suffering the side effects of 30 years on Dilantin and also going through menopause! If that isn't a crazy combination I don't know what is. You have to take more of one thing because of the other. Then the other renders the first one less effective anyway so you have to keep taking more......Your hormones are already wacky but they get wierder and your moods and emotions are all over the place. Depression kicks in to help that along too.........
I am survivng this and my husbnd has learned how to dodge most of the bullets I shoot at him so why not just leave things be and cope with what I know???? Because it has to be better then this!!!! They just guessed 30 years ago - maybe they can pinpoint it now and maybe there are better solutions. Their guess then was that it was a result of a head injury suffered 3 years earlier (a skull fracture and blood clot on the brain that nobody found until I insisted on knowing why I started having seizures out of the blue). We/they weren't connecting them with the accident since it had been 3 years prior.
That may mean that I have a leison that is operable! That could take me clear off the AED meds....at least until I am over 65 and my risk of needing them for other reasons increases. By the time I get there maybe the age will be raised to 75! I just know that I don't want to brake and fall apart now....and that is what is happening. If surgery isn't an option then at least maybe there are drugs that have fewer side effects....I've already lost most of my teeth - but I still have bones to take care of!!!! I am just not done living and playing yet!
Checking out Mayo and MINCEP since there are no comprehensive centers here in Iowa and I am not going back to the joker I saw last September. If anyone has some suggestions or recommendations I sure would like to hear them..........along with all the encouragement I can get that going through this will be worth it in the end......Post stuff here for others to see or send it privately to [email protected] with Epilesy in the subject line so I don't delete it as SPAM or something.
Love to all and thanks for rattling my cage - I needed it again so I don't chicken out.
Later.........................Lee
Dear Leslie Ann and Bob,
It's my turn to thank you!!!! It is easy to talk and advise when you are on the "controlled" side of things - and have been for a while. It is another thing to get yourself out of the denial that things are going to remain okay and to decide to put yourself back through that ugly and scary time of your life - just to find out if things can get better............I am about to do that. I have to be honest - I am scared to death.
Don't know where I am going yet but it is long past time. 30 years ago they made a guess - not a diagosis. I got lucky that the second set of meds has worked all this time. Maybe the neuro I went to see last September was the one that made me really think about it when he asked me "why are you here if your meds were working".......I had to ask myself if I really did want to mess with anything or just coast along the way I was going - he didn't seem to care one way or another.
Well it had been 30 years since I had seen a neuro and I figured it was time I did. It was time to find out how much had changed - with medicine and with me! If he wasn't interested in doing that for me or with me - then I will go elsewhere!
I am suffering the side effects of 30 years on Dilantin and also going through menopause! If that isn't a crazy combination I don't know what is. You have to take more of one thing because of the other. Then the other renders the first one less effective anyway so you have to keep taking more......Your hormones are already wacky but they get wierder and your moods and emotions are all over the place. Depression kicks in to help that along too.........
I am survivng this and my husbnd has learned how to dodge most of the bullets I shoot at him so why not just leave things be and cope with what I know???? Because it has to be better then this!!!! They just guessed 30 years ago - maybe they can pinpoint it now and maybe there are better solutions. Their guess then was that it was a result of a head injury suffered 3 years earlier (a skull fracture and blood clot on the brain that nobody found until I insisted on knowing why I started having seizures out of the blue). We/they weren't connecting them with the accident since it had been 3 years prior.
That may mean that I have a leison that is operable! That could take me clear off the AED meds....at least until I am over 65 and my risk of needing them for other reasons increases. By the time I get there maybe the age will be raised to 75! I just know that I don't want to brake and fall apart now....and that is what is happening. If surgery isn't an option then at least maybe there are drugs that have fewer side effects....I've already lost most of my teeth - but I still have bones to take care of!!!! I am just not done living and playing yet!
Checking out Mayo and MINCEP since there are no comprehensive centers here in Iowa and I am not going back to the joker I saw last September. If anyone has some suggestions or recommendations I sure would like to hear them..........along with all the encouragement I can get that going through this will be worth it in the end......Post stuff here for others to see or send it privately to [email protected] with Epilesy in the subject line so I don't delete it as SPAM or something.
Love to all and thanks for rattling my cage - I needed it again so I don't chicken out.
Later.........................Lee
RE: Help- seizure disorder or not???
Submitted by LeeMc on Sun, 2004-12-12 - 16:46
Lee here......No you are not crazy - but some of the neuros are underinformed and/or misinformed when it comes to epilepsy and other seizure disorders. Just because you do not have a seizure during one 45 min. EEG does not mean you don't have them. The original neuro must have seen something in the first EEG or the MRI to merit the meds - even if only as a precaution while further study is done. Do you know why he left or where he went?
Definately get another opinion and seek a neuro who is either an Epileptologist or who at least treats many people with seizures so you can feel fairly confident that they can get or will base a diagnosis on more then one EEG and an office visit. Contact your local Epilepsy foundation for some referrals!
Wishing you the best................Lee
Lee here......No you are not crazy - but some of the neuros are underinformed and/or misinformed when it comes to epilepsy and other seizure disorders. Just because you do not have a seizure during one 45 min. EEG does not mean you don't have them. The original neuro must have seen something in the first EEG or the MRI to merit the meds - even if only as a precaution while further study is done. Do you know why he left or where he went?
Definately get another opinion and seek a neuro who is either an Epileptologist or who at least treats many people with seizures so you can feel fairly confident that they can get or will base a diagnosis on more then one EEG and an office visit. Contact your local Epilepsy foundation for some referrals!
Wishing you the best................Lee