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Structural abnormalities?

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Unread 02-22-2013, 09:29 AM   #1
copelsa
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Default Structural abnormalities?

Hi there. I have had simple partial seizures for the past 23 years (I am now 38). I have never lost consciousness that I know of and mainly experience dejavu, nauseau and the ability to process what someone might be saying, or articulate thoughts-- I can respond with things like "just one moment" or "I'm sorry..." Sometimes I have upwards of 10 in one day and I can have them upwards of 15 days in a month. I have a structural abnormality in my left temporal lobe. My question is whether or not anyone has had seizures for spanning so many years without having complex or even grand mal? Also, I was wondering if anyone with epilepsy resulting from a structural abnormality has had success with any medications (I have tried 6 different mess and am currently undergoing tests to see if surgery is an option) Also, I have just begun Onfi and wondered if anyone with resistant seizures has had success with this drug? Praying for a miracle. Thanks soo much, this forum has been really helpful.
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Unread 02-22-2013, 05:05 PM   #2
Porkette
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Hi copelsa,
I've had simple partial (aura) sz. for over 30 yrs. along with absence and complex partial sz. that I've had 40 yrs. now. I started having sz. at age 10 and I'm 50 now. When I have the simple partial sz. I start to see colors flashing back and forth in my eyes, get a nervous feeling in my stomach and once in awhile I will get a muscle spasm around my mouth so I can't speak. I have often found it hard to concentrate so I just tell myself over and over where I'm at or what room I'm sitting in and that will help me realize what's going on and where I'm at.
There will be days every month that I have up to 5 or more simple partial sz. and I've been on 11 or more different AED's (sz. meds.) Just like you I have a structual abnormality in the right temporal lobe where to many brain cells went and they never dissolved as I got older this in turn caused scar tissue on the RTL and it started the epilepsy. I've never tried the drug you are taking but I did have a DNA test done and found I was drug resistant. If you are interested ask your Dr. to do a DNA test on you and this will show what AED's will work the best for you with the least side effects or if you are drug resistant. I had brain surgery done twice to help reduce my sz. and since then I have many more simple partial sz. than I did before the surgery was done. Try taking vitamin B12 1000 mcg. once a day this has done wonders reducing my sz. I wish you only the best of luck and May God Bless You!
Sue
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Unread 02-22-2013, 06:41 PM   #3
copelsa
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Sue,
Thanks so much for your reply- that is incredibly helpful. I have never heard of the DNA test to see if I am drug resistant- I will definitely bring that up with my neurologist and look into the vitamin B12. You said that your simple partial seizures increased with surgery- did the other type of seizures decrease? Thank you so much for sharing some of your own journey. God bless you.
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Unread 02-23-2013, 02:24 AM   #4
Darlene
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copelsa,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. You will find out we are supportive and relaxing place.

Looks like Sue has gotten you started on some good steps to begin with.

Please keep us up to date on your situation. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.
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"Life without God is like an unsharpened pencil -- it has no point.
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Unread 02-23-2013, 02:10 PM   #5
Porkette
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Hi copelsa,

My simple partial (aura) sz. increased after the surgery was done but my absence and complex partial sz. decreased 50-60%. My neurosurgeon told me that the surgery would only reduce my sz. and that instead of having a full blown complex partial or absence sz. I would probably have more simple partial sz. and that's exactly what happened.
I will tell you that often Drs. will tell a person that they don't do DNA tests but it's a bunch of nonsense the only reason they don't want to do a DNA test on a person is because some Drs. like to push the drugs on people because they are making money from the companies making the drugs each time they write a perscription for someone. I had to speak up to my Epileptologist and tell him that I demanded a DNA test done and all they have to do is take some salavia from a persons mouth or a little blood and they can match up the enzymes and other the chemicals in a persons body to the best meds for them. Then a person doesn't have to try drug after drug.
As far as the B12 goes I learned about that yrs. ago from other friends who have epilepsy and then I spoke with my pharmacist to make sure that the B12 wouldn't mess up my other AED's and I've decreased my sz. greatly since I started it. I wish you only the best of luck and May God Bless You!

Sue
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