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Old 09-13-2010, 12:37 PM
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Hello, I'm Kimberly....


I'm Kimberly.

I just turned 49. In 1977, I was diagnosed with epilepsy. I was 16 years old. I stayed on phenobarbital and dilantin during that time and my college years. Then my wonderful doctor moved away and I just quite taking my meds.

A few years later, of course, I had a really bad seizure. I was put on Tegretol and have been there ever since. I have worried over the past few years about the liver damage. My current doctor and I have decided to try Topamax now.

We started exactly four weeks ago. He told me to stay on the Tegretol (900 mg) and to start 25 mg of the Topamax and increase it by 25 mg each week until I get to 100 mg and I will see him. Well, that's this week, but he is out of town and I will see him one week from today.

I've done GREAT until two days ago.

Starting two days ago and continuing until this very moment - I am nauseaus with a growling stomach feeling, feeling as if I could go to the bathroom (but I don't), dopeyheaded, and very fatigued.

I know that I will see him Monday, but I have to ask because it is making me nervous. Is this the Topamax?

I'm glad to see you people. I didn't know you were here.
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Old 09-13-2010, 12:58 PM
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Welcome kimberly


I've been on Tegretol most of my life. it was only after being on it for over 20 years that one day my pharmacist pharmacist put 2 stickers on the tegretol, one that said not to take it with grapefruit or grapefruit juice & the other to take it with food or milk because of the effects it can have on your digestive system. Have you been taking it with food or milk?
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Old 09-13-2010, 01:10 PM
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Originally Posted by epileric View Post:
I've been on Tegretol most of my life. it was only after being on it for over 20 years that one day my pharmacist pharmacist put 2 stickers on the tegretol, one that said not to take it with grapefruit or grapefruit juice & the other to take it with food or milk because of the effects it can have on your digestive system. Have you been taking it with food or milk?
Hi, epileric.

I've always known not to eat grapefruit or drink grapefruit juice with my tegretol. My wonderful doctor that I miss very much told me that when I was 16.

Yes, I am trying to eat a little bite when I take the Topamax or any meds really.

Thanks!

Do you get a liver test every year?

Last edited by kimberly; 09-13-2010 at 01:13 PM.
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Old 09-13-2010, 01:18 PM
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Yes I do go for regular liver tests & they've been so good that I don't really stress about it.

That said, just because my liver isn't reacting badly to my meds (yet) doesn't mean that everyones liver will not be effected.

The problem is that all anti-epileptic drugs have different side-effects that effect some part of the body. I know that Keppra isn't processed in the liver but it can have other effects that may are not that desirable. What you need to do is find out what medications effect you negatively the least yet have the most positive & helpful effects. As all anti-epileptic drug's effect everyone differently the only way to really find out is to try them.
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Old 09-13-2010, 01:25 PM
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Hi, Kimberly,

Welcome to CWE! I'm so glad you found us.

About Topamax... I second what Eric said. It effects everyone differently. There are tons of possible side effects, some which you may say are okay and you can live with it, or you may have some you are not willing to live with. Every time you switch meds you'll have a different mix of side effects.

Do you like your new doctor? Is he/she a neurologist, a primary care physician, or an epileptologist (seizure specialist)?
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Old 09-13-2010, 01:34 PM
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Originally Posted by Endless View Post:
Hi, Kimberly,

Welcome to CWE! I'm so glad you found us.

About Topamax... I second what Eric said. It effects everyone differently. There are tons of possible side effects, some which you may say are okay and you can live with it, or you may have some you are not willing to live with. Every time you switch meds you'll have a different mix of side effects.

Do you like your new doctor? Is he/she a neurologist, a primary care physician, or an epileptologist (seizure specialist)?
I LOVE my new doctor (neurologist). Well, he's relatively new. (Five years.) I've been through three different neurologists in my epileptic lifetime. And they've all been superior.

I just have ants in my pants because I can't see him until Monday (he's on vacation).

I don't like not feeling well.
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Old 09-13-2010, 01:41 PM
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Excellent! Finding a good doctor is half the battle!
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Old 09-14-2010, 03:50 AM
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why u need to take it with anything i just chuck all my meds into the palm of my hand and then just chuck em to the back of my throat an swallow its a good laugh as the wife cant swallow meds at all and hates watching me do it.
i know it says on all the boxes to be taken with a drink but i been doing this for years and only now an again do i get one tab that decides it dont want to follow the rest so it sticks its arms out half way down and wont go any further lol
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Old 09-14-2010, 06:30 AM
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Welcome Kimberly! I am so glad that you were able to find this site. I know it can be nerve racking to start new meds. Hang in there. All the best.
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Old 09-14-2010, 08:59 AM
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Originally Posted by lureswinger View Post:
why u need to take it with anything i just chuck all my meds into the palm of my hand and then just chuck em to the back of my throat an swallow its a good laugh as the wife cant swallow meds at all and hates watching me do it.
i know it says on all the boxes to be taken with a drink but i been doing this for years and only now an again do i get one tab that decides it dont want to follow the rest so it sticks its arms out half way down and wont go any further lol
that's the spirit. smoke 'em if you got them! take 'em if you got 'em!
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Old 09-14-2010, 07:40 PM
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Welcome Kimberly
Wonderful that you are joining us here at CWE.

It is my daughter who also has seizures (though she hasn't had one in 5+ months). She began having seizures at the age of 14, and after trying meds with terrible results, she is now med free, and we are controlling the seizures with nutrition.

We are now beginning to dream that she might be able to drive one day.
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