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Old 06-17-2007, 10:51 AM
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Hi everyone,

Im Ines im 22 y/o and living in south florida and i've been diganosed with epilepsy for about 2 years now. I've been on a couple of meds so far and nothing seems to really work. I've been kicked out of school because of my "problem", can't drive, can't go out and no one in my family has this so i feel pretty much alone. I know it's not the end of the world, but sometimes it really boders me... but i guess there's not much else i can do...
oh well i guess life's 2 short anyways so im not gonna let this stop me from doing what i wanna do n still have fun!
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Old 06-17-2007, 11:22 AM
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Hi Ines, welcome to the forum.

General rule of thumb is to not titrate down on medications until you have gone at least two full years without a seizure (of any kind). Epilepsy meds are not like aspirins that one can take sporadically as they feel the need. In order for them to work properly, there has to be a steady level of the drug in the bloodstream.

Also, you should never just stop taking anti-epileptic drugs cold turkey. You are supposed to slowly decrease the dose you are taking over a period of weeks.

Unfortunately, life with uncontrolled seizures can be extremely stressful for the reasons you mentioned (limited work options, lack of legal driving priviliges, possible alienation of friends/family). Stress just happens to be a major seizure trigger too, so it can seem like a self feeding spiral (or catch-22).

The key is to find some way to maintain control of your seizure threshold. If your meds are working, keep taking them! If they are only partially working, I'd recommend you get proactive in keeping a seizure diary and start identifying your own possible seizure triggers and then eliminating them from your life.
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New to CWE? I suggest reading the proactive prescription and epilepsy 101 threads. Also check out this chart of alternative epilepsy treatments and this page on EEG Neurofeedback. More great stuff can be found in the list of the best forum threads.

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Old 08-03-2007, 09:39 PM
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I agree with the seizure diary Inez. It helped me out much more than I ever would have guessed. Read, http://www.amazon.com/exec/obidos/redirect?tag=projectmana0a-20&path=tg/detail/-/0802774652/ref=ase_projectmana0a-20?v=glance&s=books, by Adrienne Richard and Joel Reiter;, M.D.

Let us know how it's going. You may not have much support at home (and I know EXACTLY how that feels), but you have it here!
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Woohoo! My childrens book got published!
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Old 08-03-2007, 09:56 PM
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Hello

Glad to have you here! I'm too from
Florida, and not too far from you!
Stick around ~ we're a friendly bunch
of people!

I have just RECENTLY surrendered,
voluntarily, my Driver's License after
all these years (and I was born with
this), so I now have to depend on my
27 speed Trek to get around and it can
be really TOUGH!

BUT YOU ARE LUCKY!!

You reside in an AREA where EFA Chapter
is TREMENDOUSLY STRONG!! Have you
consulted with them recently?
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Old 08-03-2007, 10:17 PM
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I have had epilepsy since I am 11 yrs old. I am going on 52 yrs . I had 24 yrs of controlled szs than bam lost it all . I wouldn't accept the drs diagnosis and I just kept trying to get control .Until I ran out of meds 1-1/2 yrs ago and I went to a homeopathy Dr who had epielspy in her family and they all treated with homeopathy meds .Thanks to BB's advice I am now weaning off my 50 mgs of mysoline starting tomorrow,down to 25 mgs. of mysoline. Normally someone who doesn't go to a homeopathy dr as soon as they are diagnosed doens't have such luck at getting off the meds totally. But I seem to be the exception to every rule,thank god.

What I am trying to say is don't give up , their are always alternative meds and alternative treatments.

Riva
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Old 08-03-2007, 10:58 PM
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[QUOTE=mariaine22;5568]Hi everyone,

......... I've been kicked out of school because of my "problem", ....................

WHAT!?!?! That can't be right!
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