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UPDATED: Thu, 11/05/2009 - 12:50pm

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KATHS2
KATHS2

Running out of Options


First a short history..I'm 54 years old. I was diagnosed with Complex Partial Seizures 2 years ago, though I've probably been having them all my life, especially during my teenage years...My seizures consist of a strange aura, dizziness and fainting. I do not have any typical convulsive movements, just blackout. An EEG showed small continuous seizures. The neurologist said they were so small I probably didn't feel them..but must have had larger seizures when the blackouts occured. I've been to 4 neurologists.

So far I've been on Dilantin ,Keppra,Lamictal, Tegretol, and Topamax  twice, once before  and after the Lamictal.I couldn't take any of them. If it listed a side effect, I had it. I spent almost 2 years either feeling so tired I couldn't move, with memory loss, speach problems, sometimes feeling like I would jump out of my skin, hair loss, weight gain, weight loss, tingling, nightmares, shaking, sick to my stomach, constipation,,,,you name it, I had it. My last visit to the doctor, I told him I was tired of feeling sick...I wasn't sick before they diagnosed me with Epilepsy, I just passed out once in a while, but I've been sick from the drugs..to the point that I can't stand it any more.  My Neuro said he has run out of options too because I'm so sensitive to the meds. I've always been that way, even with over the counter meds... I don't even take aspirin.  I have an appointment set up for John Hopkin's Epilepsy Center but not until February sometime. I'm suppose to be taking the Tegretol till then but they work like sleeping pills for me so I can't function on them... Without consulting my Doc, I weened myself off the drugs and have been without anything for 2 months now...No seizures, No nothing...and I feel Great for the first time in 2 years. Will I have more seizures? I don't know...I'm not even sure if I'm going to keep that appointment..we'll see.  My insurance isn't going to pay for it..so I guess it will depend on how I'm going to pay for it.

 

By KATHS2 at Thu, 11/05/2009 - 12:50pm | 26 views | 1 comments

Recent Comments on this Discussion

I am 51 yo female, similar sensitivity to meds even over the counter. Even medicated, I haven't been seizure free for three months (I was diagnosed over 10 years ago). Last year, I had the good fortune of meeting a friend with a PhD in Pharmacology! She is as sensitive yomeds as I am...so, it's not "all in our heads!". Not all people can tolerate anti-seizure meds...but those are the only treatments available to neurologists to help us with (except surgery in some cases). If I had been seizure-free w/o meds for, say, six months I wouldn't pay for a neurologist's time. I would communicate (in writing) your cancellation and reason for it. If you do keep the appt, ask beforehand what the Dr has in mind for treatment IF she finds evidence of persistent seizures given your intolerance to meds. I have to accept my side effects because my seizures are too frequent and progressive (kindling). Best regards....

pkstinn

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