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Old 06-08-2004, 07:38 AM   #1
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Mo7609 HB User
Topamax

Has anyone (i am sure there are at least a handful of y'all) out here used Topamax? I am experiencing the aweful leg hand and face numbness. The hands and face I can deal with the feet is what is getting to me soooo bad that I have been left screamming at the top of my lungs in my house. It has left me crying for no reason at all I was wondering how long this side effect lasts. anything else I should know about? Oh I have also lost 10 pound these past 4 days which is actually good since I am very overweight so that is one side effect that I like. Thansk guys. Mo

 
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Old 06-08-2004, 08:31 AM   #2
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Re: Topamax

I took Topamax for three to four months before switching back to Neurontin, the face, arm numbness feeling never went away for me. It was just a symptom I couldn't get used to. Kept thinking it would go away but that never happened, maybe if I'd stayed on it a little longer, but when it comes to numbness, that's a feeling I don't welcome. Congrats on the weight loss.
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Last edited by scissorhands; 06-08-2004 at 08:31 AM.

 
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Old 06-08-2004, 04:14 PM   #3
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tyler7 HB User
Re: Topamax

Mo -

Last fall I took Topamax for about a month for my nerve pain, but stopped it because for what little (barely any at all) relief it gave me, the s/e's just wrecked me. Sometimes with any drug, you can learn to deal with adverse s/e's, IF you feel you're getting the intentional benefits of it, too. That was the not the case for me and Topamax.

The s/e's I experienced where the numbness in extremities, food tasting different, appetite severly suppressed (thus the weight loss), a significant slow in cognitive functioning, and towards the end, some pretty heavy depression along with SEVERE apathy. These are all very common side effects. The numbness and food related ones I could do with, but I think I said back then in some posts that the drug was using my brain as a playground. All you need to know is the drug is nicknamed "Dopamax" And as I said, the last 7-8 days of taking it I was becoming extremely depressed (though had plenty in my own reality to already be sad about), but it was the apathy that really hit me by surprise. Just think of it this way - Topamax slows down the movement of neurons in your brain. Neurons are necessary for the production of seratonin, and when you have less of that being produced, it's simply biologically inevitable that you'll become somewhat depressed.

However - all of this being said, DON'T let this scare or freak you out about the drug. Hopefully you will find relief from it (have heard plenty say that it 'saved their lives') and then be willing to stick out any rough s/e's. I say stick it out because typically, those s/e's level off. As with many (if not all) anti-seizure meds (Topa, Neurontin, Tegretol, Lamictal, etc) it is very important to properly titrate up in your dosing, going at a smooth, gradual level until you reach you & your doctor's goal dose. Doing this gradual increase is what gives you your best chances of experiencing as few (and as least harrowing) s/e's as possible. From what I've read and heard, once you reach a goal dose and stay there for a little while, your chances increase dramatically of getting past most of the s/e's. It's in the titration where most of their dangers live. It should also be noted (again, from what I've learned) that apparently if you dose up or down too quickly, or even stop taking the drug abruptly, even though you are not taking the drug for its main use (helping w/seizures) but rather the off-label use of helping with nerve pain, you put yourself at great risk of actually having seizures yourself.

But don't take my word for it. Others will come, I'm sure, and do a little web searching and you'll find plenty of official fact-based sites about Topamax and other anti-seizure meds. Good luck

 
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Old 06-09-2004, 07:21 AM   #4
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Mo7609 HB User
Re: Topamax

thanks you two,
The more research I do the more I think that I don't like this medication. Then again I don't like half the meds that I am on so what can I really say. My feet are really the one thing that bothers me but I did notice in the store last night that I couldn't remember the name of a veggie for the lfe of me.ITwas really weird. Other things like that have been happening and I hear that this is quite common. I guess I will wait to see if anyone else has anything more to add. thanks a bunch!Mo

 
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Old 06-09-2004, 03:42 PM   #5
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tyler7 HB User
Re: Topamax

MO...

Actually this is pretty much what I was afraid might happen after having done my post. PLEASE don't let me scare you regarding taking Topamax or not (in fact I recently chastised someone who wrote a post that was blatanly trying to put the fear god into people about taking a particular drug). Yes, I had a negative experience with it, as certainly have others, BUT, there are scores of people who have had (and ARE having) excellent experiences with it, it's providing them a great deal of relief. And yes, even some of those people who it has worked for did go through these negative s/e's themselves, but they were getting enough relief for it to be worth it, and they eventually got over most if not all of them. What is your dosing like right now? Are you still climbing the ladder to the doc's goal dosage for you? Because if you are, remember, like I said typically these s/e's manifest themselves worst during titration. Also like I said, continue to collect as much factual and patient experience research as possible. Trust me, you will get to see both sides of Topamax. But of course it's up for you to decide ifyou're getting enough relief from it to make handling the s/e's worth it (and of course discussing with your doc). Good luck

 
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