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Old 01-31-2003, 09:42 PM   #1
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wilde HB User
Thumbs up very happy to find this & have question

Hello everyone, I have just joined and am thrilled to have found a place like this where everyone seems so very supportive of one another. I hope you dont mind if I stick around a while :round
I have been going thru test after test for months and because I have not had the seizure activity during all the EEG's I have gone through, I have not been officially diagnosed. There is a needle test available to me (they stick them in the lower portion of your brain..eek!), but Im beside myself in fear to attempt that one. It does appear that the general consensus amongst the two specialists I've seen is that there exists epileptic activity in my temporal lobe. I know myself it's there 100%..we all know our own bodies for the most part.
I somehow feel a little badly posting because I dont have grand mal episodes, and my heart goes out to those who have suffered not only the seizures, but the lack of understanding and compassion that can also occur. But I do feel this has interfered with my life, and in reading some of the posts I have found some similarities to my situation. I guess that's why I have sought out a place like this. My big first question is the medication issue. For those of you suffering non-convulsive seizures is it really worth it to go on meds? The side effects seem just horrendous to me, and at this point appear to outweigh the benefits. I have been suffering these "episodes" for a few years now (also in my teens for a brief spell), and although I admit they are increasing in intensity I am absolutely terrified to take pills. Is it healthy to go on as I have, not taking anything?? Too taxing on the brain?? Can you go on for a short "trial" period and maybe they'll just go away?? (dumb question I'm sure )

Thanks so much for your time.

 
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Old 02-01-2003, 06:49 AM   #2
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Join Date: Dec 2002
Location: Dayville, Ct. USA
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kayakmom HB User
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HI and Welcome. First there are never any bad questions. Sorry you have had a tough time getting a firm DX but sounds like you have doctors who are trying. I do not know this needle test you spoke of, maybe a Canadian thing? I know Epilepsy Ontarios site has loads of helpful info.
The non convulsive seizures do certainly interfere with your life. My son has these and sometimes they are so tricky to identify. YOu sure know something is not right though! Try not to compare yours with the GM, yes those are rough but ALL kinds of seizures are bad and have a negative impact on your life. SO do not feel bad for sharing!
My son is currently off meds, medically approved. Still having some seizures, but doctors have him off to retest some things, it has been a LONG 6 months off them. You have to decide which is worse the seizures or the med affects. The only scary part is some believe seizures begat worse seizures. In other words the brain can learn to generalize from non convulsive to convulsive if not treated. We did not have seizure control on meds so the time off them has not been mush worse, just free of the side effects.
Hope you get answers soon. Hang in there...
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Old 02-01-2003, 12:05 PM   #3
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Oh gosh! I hope you don't mind me posting something, even though I'm new to the board, too. My information may be outdated, because I've had epilepsy for so long. Anyone with newer info will probably let us know here!!

I was always told it's better to use meds to prevent any kind of seizure, even if it's not the grand mal type. I agree with the last poster, too, that I was told your brain could "set a pattern" to having seizures more often, until you may have them one after another. They told me the brain damage would be worse than what the medicine would be.

Now, if that's no longer the accepted theory, somebody please let us know. Otherwise, I would suggest you see some specialists that are understanding and will work with you to control the "episodes" so you hopefully won't develop more problems. But as I said, get a specialist to tell you if that's really the case nowadays. Good luck!! KJ

 
Old 02-02-2003, 09:47 AM   #4
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wilde HB User
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Thanks for your responses, I do appreciate the input. I have a lot to think about, especially with wanting to get pregnant in the next couple of years. I will make my decision soon, but will certainly continue to monitor this board. Thanks for being here!

 
Old 02-02-2003, 02:43 PM   #5
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Location: VT USA
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Krazykcio HB User
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Hi All,
My worse seizures begin with simple partials, then to complex partials...and end in grand mals. NONE of them are fun, believe me, so the type you have is really insignificant. Actually, if truth be told, I prefer having grand mals myself....because I'm unconscious! That may sound weird, but I am conscious when I have complex ones and I an totally aware of my diaphram seizing....and not being able to breath. It's total HELL!!!! So it's a quality of life issue you need to consider. If your seizures are such that you can lead a normal life (safely!!!) you could probably live without meds. The side effects are not fun, but are much more pleasant than seizures! As for the normal EEG, I am willing to bet that 75% of the people on this board have had more normal EEG's than abnormal. I had three normal ones before any abnormalties showed up. Last, the only time I have heard about the test that was done by sticking needles in the brain was in preparation for brain surgery. If you aren't having grand mals, and if your seizures aren't increasing in frequency or intensity I would question the need for such an invasive test. I'm not a Doctor, but it sounds pretty horrible! At any rate, good luck. We'll be thinking of you. Hugs, Kathy
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Old 02-02-2003, 04:26 PM   #6
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[This message has been edited by satman (edited 02-16-2003).]

 
Old 02-02-2003, 07:22 PM   #7
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kjgems HB User
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You are all so helpful, really! Wilde, I hope you get checked. I didn't realize you want to get pregnant in the near future. That may definitely impact your decision. Again, if anyone has newer info, please let us know.

16 years ago my ObGyn and pediatrician told me I needed to stay on the meds to prevent seizures during pregnancy. That is probably a separate issue from your quality of life. When you are pregnant, you are dealing with your baby's life. I already posted my experiences under "Mood & Memory Problems", but to make a long story short, 16 years ago my docs chose to keep me on Dilantin because they said there was more known about it's effects on the unborn. And if another med didn't stop the seizures as well, that would be worse for the baby.

I had 2 wonderfully healthy children, and I breastfed them each for 2 years, with the blessing of the pediatrician. They are intelligent and active. So there is hope for those of us with E to have normal pregnancies and healthy children. I wish you both!!

God bless you all!! KJ

 
Old 02-03-2003, 11:53 AM   #8
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wilde HB User
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I just cannot believe how wonderful you all are here! I read the newest posts and tears just sprung to my eyes. I never ever expected to feel so welcome here and am beside myself with gratitude. I only hope to be able to give some of it back to those who need it.
I just wanted to direct one quick question to krazykcio, and that is how long was the transition from simple partials to the level you are at now? A few years? Months? I have noticed an intensity emerging in mine. There are blank stares,lose awareness of everything around me, deja vu's, nausea, feeling like im suffocating..see & hear & smell things..then the buzzing & burning in my head (the sound is similar to electrical wires on a hot , summer day..anyone get that?), then I basically collapse with a huge headache and feel ill and disoriented..but it seems to be 'growing' if that makes sense. Anyway, just wondering that timeline you had..thanks again ever so much!!

 
Old 02-07-2003, 09:29 PM   #9
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Krazykcio HB User
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Hi Wilde,
I'm not sure I understand your question. When you ask about my timeline, do you mean during a seizure...or days, weeks or months? I'll try to cover both. I began having seizures September 2001. Back then my seizures began with a wierd feeling, like my head was fuzzy, and I felt like my brain was disconnected from my body. Then my right side would get tingly, and I'd walk like a drunk...because it was like my right side was nonexistant...bumping into stuff on my right side. Then I'd have to lie down because I'd have flashing in my right eye, progressing to muscle twitching (like severe shivering) that began in my right hand...travelling to my entire right side. I would not remember another thing. I'd wake up in the emergency room feeling as if my head was in a vise, and with the tip of my tongue bitten up. (According to my family members I would have pretty severe grand mal seizures, and then would be unconscious for about two hours afterwards.) Now that I am on Carbatrol and Lamictal my seizures follow the same pattern but they don't progress to grand mals. They are more frightening for me now because I am aware during the entire episode, and I am way too aware that I am having difficulty breathing. Fortunately they only last for about three minutes, but I am paralyzed on my right side for about twenty minutes. I was 47 when the seizures began. I am now 48 1/2. My MRI showed a lesion in my occipital region. I hope I answered your questions. Feel free to ask anything you want. I check in with this board every few days or so. Be well, Kathy
__________________
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