I need to get off Topamax - any ideas?

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Kathy97123

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I was on Topamax for many years now and my hair loss is so extensive that I just can't take it anymore. My nails are also so thin it is getting painful to touch them. I will have to start wearing wigs soon and I am thinking about a switch to Dilantin. Any thoughts out there?

Thank you!!
 
Welcome Kathy

Have you discussed stopping Topomax with your neurologist?

I would want to be on another AED before stopping whatever one I'm taking. Of course all AED's have side-effects and everyone reacts differently to each one.
 
I would deffently discuess this with your neurologist. Tell him everything that is going on with you, all the problems that you are having and hopefully he can put you on something else.
 
I spoke to him about switching to Dilantin. I used it when I first had seizures and I remember it made me tired. I don't remember much else. Carbatrol did a number on my bone marrow, and now topamax is making my hair fall out. I was just wondering what negative side effects I can expect from Dilantin. Thanks!
 
Kathy97123 said:
I was just wondering what negative side effects I can expect from Dilantin. Thanks!
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Dilantin can destroy gums or at least make them bleed and swell. As Eric said, all AEDs effect everyone differently. I'm currently taking Topomax along with Keppra and haven't experienced hair loss.
 
My son was on Topomax and Lamictal. The Topomax made him so thin.

His neurologist switched the Topomax out for Keppra and he was seizure free for almost a year.

I wouldn't dream of switching out any AED without a real disciplined approach in partnership with your neurologist.
 
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I started on Dilantin and it didn't seem to do any good. It did make my gums worse and it seemed to me my seizures were twice as commen. I got a new neurologist and he put me on Topomax, still with some dilantin but things are 100 times better. I dont have any hair or nail problems. I'm 44. Eating enough is a problem. I would never switch anything my neurologist didn't tell me to!
 
I was on Topamax for many years now and my hair loss is so extensive that I just can't take it anymore. My nails are also so thin it is getting painful to touch them. I will have to start wearing wigs soon and I am thinking about a switch to Dilantin. Any thoughts out there?
Click to expand...

You might want to consider taking a biotin supplement. Many AEDs reduce the body's biotin levels, which can in turn lead to hair and nail problems. Biotin is another name for vitamin B7 -- you can read about it here: http://en.wikipedia.org/wiki/Biotin
 
I am on Topamax and my hair is thin, but I have also messed around with hormones. It never occurred to me that it could be the Topamax that is making my hair thin.

My doctor recommended biotin and zinc to get my hair back. Biotin 1000, Zinc 100.

Best of luck,
Jules
 
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