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Why Does Epilepsy Get Worse After It Begins?

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sami_1982 Experienced User
January 2nd, 2004
Dear everyone I am 21 female from australia
I have had epilepsy now for 3 months, and at the beginning I got no warnings that a seizure was going to happen I would just fall into a grand mal. 2 months later I started taking tegratol and now I get weird feelings throught the day like sinking and dejavu I feel like when that happens I was supposed to have a seizure but the meds kicked in or something. Then sometimes I get the worst headaches now and then my eyes get weird squiggles and lines in them and all I see is black and then my eyes flutter and then I have alot of petit mal seizures now on tegratol. I have recently realised that I cant handle strobe lights thet spin and change colour, or paramedics lights or police lights. Or the sun when it flickers through the trees. I feel because it took so long for me to get on meds that I got worse. Will I get worse from this. My doctor says my med isnt working and that I need to try something new. Ive been researching and there arent many meds that can help with photosensitivity are there? Except deptoke. I have only heard bad things about that and I am scared to try it. On tegratol I have only had the cold and flu simptoms as a side affect. B4 taking the meds when I was going to have a seizure about 1 minute b4 it would happen my feet would go tingly and I would feel strange all over and I couldnt get to the ground fast enough. I dont have as many grand mals as b4. Now I am having perhaps 1 a day and about 10 petit mal seizures.So if anyone can help me out that would be wonderful. Also now when I have a grand mal I am very confused of where I am and I sleep for a while after then I feel like a weight has lifted off me and I feel fantastic well only because I have no weird feelings until the next time anyway.

Well ty and take care everyone.

bye Smile
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phil dennison
replied January 6th, 2004
Experienced User
You have a part in your brain that is dying. Medicine dose not help as the brain slowly dies. If you want to live ,brain surgery is the answer. Just ask me I had brain surgery.
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mbrumitgm
replied January 8th, 2004
Brain surgery is not always the answer. However depakote to my child was a wonder drug....No side effects no problems and no seizures. The confusion and tiredness after a seizure is called the post ictical phase. Perfectly normal and perfectly alright
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sami_1982
replied January 8th, 2004
Experienced User
3 Months Now
Ty for both inputs.
I have been spoken to about brain surgery. I will not have brain surgery I am too scared. When I was 8 yrs old I cracked my head open they said that is what is causing my epi but they dont really know. After a episode I cant talk properly I talk really slow and deep like a robot and I cant walk my feet are like jelly. So wont be having brain surgery. I am taking tegretol at the moment and its slowly becoming active for me. I have just had my dosage upped and I will try any meds b4 going to drastic measures.
Ty both
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phil dennison
replied January 8th, 2004
Experienced User
Mbrumitgm
Glad you do not take care of me.
Wonder drugs do not work.
Time will tell, I am 36
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sami_1982
replied January 8th, 2004
Experienced User
Please
I am only 21 I have only had this 3 months.
I want to try meds first but I guess b/s is a big thing for me to think about. My eeg readings are normal though phil. So wouldnt it be hard to pin point the area. They say its coming from my right temporal lobe
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Visonti
replied January 8th, 2004
Eliminate the Trigger
Make a fashion statement, this is easier when you're a female, get sun glasses that blockout enough light/glare that your trigger is eliminated. If you already wear eyeglasses talk to your optometrist like I did there are lenses that remove the glare entirely. Or get sunglasses that fit over the current prescreption pair (fit over solar shields) they also come with lenses that remove all glare.

No trigger, less seizures, more fun. You can even go clubbing and claim they're all the rage (i'm 26) if you get pretty colors. I have sunglasses for every occassion and for tv watching/ movie going. I also have hats (floppy, baseball, anything with a rim and style) thankfully I inherited mum's cheekbones. Think of it as an excuse to accessorise and don't forget to where a bracelet i.D.'ing you as someone with epilepsy just in case.
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phil dennison
replied January 8th, 2004
Experienced User
If your doctor does not believe in brain surgery run run run.
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sami_1982
replied January 9th, 2004
Experienced User
Phil
Please phil,
I have read some of your comments here. Why do you have to be so rude to ppl. As your opinion is the only on that counts? Ppl come here for support. You telling them their brain is dying is very scarey. As I am informed you do not have epilepsy anymore well thats wonderful but others havent been fortunate like you even with the brain surgery. So cant you please put thought and support into your answers ty
otherwise I dont want your input its scaring me what I have read from your posts.
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phil dennison
replied January 22nd, 2004
Experienced User
Sami
Sami i'm sorry this is phil. Your right no one wants a simple answer. They would rather live with epilepsy. Even the doctors are happy. I got lucky went to the hospital just for medicine. The next thing I know I met a new doctor who said ", how about brain surgey." I said," what this is crazy!" but, I did it anyway. The doctor made it sound so easy just pull the bad part of the brain out, and be epilepsy free. My doctor also said," the majority of these doctors disagree with surgery, just like you and everyone else." so have a miserable life. I relised i'm keeping this a secret, i'll never be on this site again.
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Midnight
replied January 29th, 2004
Re: Sami
phil dennison wrote:
sami i'm sorry this is phil. Your right no one wants a simple answer. They would rather live with epilepsy. Even the doctors are happy. I got lucky went to the hospital just for medicine. The next thing I know I met a new doctor who said ", how about brain surgey." I said," what this is crazy!" but, I did it anyway. The doctor made it sound so easy just pull the bad part of the brain out, and be epilepsy free. My doctor also said," the majority of these doctors disagree with surgery, just like you and everyone else." so have a miserable life. I relised i'm keeping this a secret, i'll never be on this site again.


phil, it is not what you said...It is how you said it. Heartless, rude and inconsiderate.

I understand your confidence in having had a fine surgery well done and that you feel great about having made that decision. However, nobody wants to have another person say in so many words that you are stupid if you don't do it. Or do it my way. A person isn't going to even offer that thought if a doctor does not suggest it. I would not just walk up to my doctor and say..."hey doc, I hear brain surgery is great why don't you set me up."

you need to remember what we are all going through and not judge. You came on here to let people know that people do turn out alright having brain surgery, right? Well educate them in a nice way, don't be rude about it. And do not get upset when people are apprehensive. People have there own reasons as to why they would not or could not have surgery. I say if you really want to help that you should just educate and open yourself up to answer questions for the ppl that are inquiring.

I am very new to this all and just joined this bb. I am not saying I know everything, I just know how people feel.
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Sri
replied January 30th, 2004
Just joined this nice forum.Good to see so many wonderful helpful people out there.

I was diagnosed with petit mal when I was 18 and put on heavy dosage of valproic acid. I didnt take my medications proper and it worsened into grand mal.

Somehow when I don't thave any seizures for an year or more,it lulls me into a wrong sense of confidence. No one in my family has it.When I was young(about 4), I had severe brain fever.The docs say 1% of such cases risk developing into ep. When they are 18-20 ...And I guess I am that unlucky 1%...


Notwithstanding all this, I have managed to get a decent education with a master's degree and am on the lookout for a job...!!

God bless

sri
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