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Hair Loss and AEDs!
Fri, 09/11/2009 - 11:28I am trying to find a different seizure medication with fewer side effects. I can't take Dilantin or Keppra, for some reason my body won't tolerate them. I am on Topamax 100mg daily (50/50). I have lost lots of hair. ...Enough to make 2 wigs. I am lucky that I had extremely thick hair a year ago.
But enough is enough...is ANYONE out there familiar with a medication that DOESN'T cause hair loss?
Thanks!
-Sue
Comments
Re: Hair Loss and AEDs!
Submitted by George R on Sat, 2010-03-20 - 17:22
TAKES GETTING USED TO
The loss of hair, as well as all of the "never-thought-that-would-happen" aspects of taking anti-seizure pills. Although still not complaining that loudly, I have lost most of my hair, have gained a few pounds, and find myself much more short-tempered than I was years ago. But then, that could be middle age, right? Don't think that doctors do not know of the "might happen" aspects of medicines they prescribe. Their biggest fear is that the patient will take himself off his pills without thinking. I did this once, and almost lost my life. But look around you and you'll notice that shorter hair (for men and women) is kind of coming in once again! Oh, good luck at Mayo Clinic. I had my own left temporal lobe surgery done many years ago, and while it wasn't at that hospital, I'm glad I said "yes." The epilepsy's still there, but far less intense. Think positively. I'm sure you'll hear about procedures they have now that can help you tremendously.
TAKES GETTING USED TO
The loss of hair, as well as all of the "never-thought-that-would-happen" aspects of taking anti-seizure pills. Although still not complaining that loudly, I have lost most of my hair, have gained a few pounds, and find myself much more short-tempered than I was years ago. But then, that could be middle age, right? Don't think that doctors do not know of the "might happen" aspects of medicines they prescribe. Their biggest fear is that the patient will take himself off his pills without thinking. I did this once, and almost lost my life. But look around you and you'll notice that shorter hair (for men and women) is kind of coming in once again! Oh, good luck at Mayo Clinic. I had my own left temporal lobe surgery done many years ago, and while it wasn't at that hospital, I'm glad I said "yes." The epilepsy's still there, but far less intense. Think positively. I'm sure you'll hear about procedures they have now that can help you tremendously.
Re: Hair Loss and AEDs!
Submitted by akewbc on Sat, 2010-03-20 - 15:40
wow you are one "drug-loaded" lady. :) I've been on Keppra and Zonegran and Lamictal and blah blah- (all individually) went up to 800 Lamictal- started developing Stephen Johnson syndrome--have been backing down to where I am currently 50 mg daily--and increased the vimpat to 350 a day. Vimpat- definitely causing vision issues, balance and talk about hyper-wow-
I'm headed to Mayo next week to determine if I am candidate for surgery-- which I hope I am--my biggest issue is no driving--no independence and where I live no access to public transportation. And I will do whatever I can to go through six months without a seizure to get my license back-which right now looks like surgery
But this issue of hair loss-- what can I say--geez--Until today I never ever put this side-effect of AED's and hair loss together--and I have definitely been through it--mostly with increased doses of lamictal but--I had super hair loss- and also curly curly--which was on top of already naturally curly hair-- I looked like a lot of folks do when they have lost it all and it started growing back in-
But now I know why I never put it together-- cause I am a 1 and 1/2 year breast cancer survivor. After radiation taking femara-estrogen replacement- and zometa infusions--which I thought were causing the hair loss- not the AED's and my oncologist said- hey you shouldn't be losing hair-- well duh--
and shock of all shocks-- my neurologist never said a thing about it being a side-effect- I didn't see it on the side effect list of the lamictal prescrip either
so basically, now, because I have heard of so many others haivng hair loss -- I will include it as a side effect (along with so many others) of these dam AED's. I would have never thought of.
It is just one more reminder that this is one of the many awesome reasons and advantages of this forum--
wow you are one "drug-loaded" lady. :) I've been on Keppra and Zonegran and Lamictal and blah blah- (all individually) went up to 800 Lamictal- started developing Stephen Johnson syndrome--have been backing down to where I am currently 50 mg daily--and increased the vimpat to 350 a day. Vimpat- definitely causing vision issues, balance and talk about hyper-wow-
I'm headed to Mayo next week to determine if I am candidate for surgery-- which I hope I am--my biggest issue is no driving--no independence and where I live no access to public transportation. And I will do whatever I can to go through six months without a seizure to get my license back-which right now looks like surgery
But this issue of hair loss-- what can I say--geez--Until today I never ever put this side-effect of AED's and hair loss together--and I have definitely been through it--mostly with increased doses of lamictal but--I had super hair loss- and also curly curly--which was on top of already naturally curly hair-- I looked like a lot of folks do when they have lost it all and it started growing back in-
But now I know why I never put it together-- cause I am a 1 and 1/2 year breast cancer survivor. After radiation taking femara-estrogen replacement- and zometa infusions--which I thought were causing the hair loss- not the AED's and my oncologist said- hey you shouldn't be losing hair-- well duh--
and shock of all shocks-- my neurologist never said a thing about it being a side-effect- I didn't see it on the side effect list of the lamictal prescrip either
so basically, now, because I have heard of so many others haivng hair loss -- I will include it as a side effect (along with so many others) of these dam AED's. I would have never thought of.
It is just one more reminder that this is one of the many awesome reasons and advantages of this forum--