Mo7609
06-08-2004, 10:38 AM
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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scissorhands
06-08-2004, 11:31 AM
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. :bouncing:
tyler7
06-08-2004, 07:14 PM
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" :D 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
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" :D 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
Mo7609
06-09-2004, 10:21 AM
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
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
tyler7
06-09-2004, 06:42 PM
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 :)
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 :)
Mo7609
06-10-2004, 11:46 AM
Not to worry Tyler you aren't putting the fear in me (heehee)! I'm ok BTW call me nieve but ummm what is apathy? Well Even after only taking it for 3 weeks now it has helped quite a bit. I guess it was a good thing that I took my husband with me to the Drs appointment because I was taking 75 mg 3x a day at first and the dr said a total of 75 mg spread throughout the day which is why I was having such a harsh reaction. Oh yes! The Rx bottle only says take as perscribed. (duhhh) so can't say its all my fault. You think my Dr is gonna find it all funny? So anyway when he said to cut it in half I was trying to figure it out and I was like oh well I gues then I only have to take 3 pills a day and hubby was like well how many were you taking and I was saying 3 3x day what!!!!!! thats not what he said blah blah blah. Shesh! Well anyways I'm not dead feet still tingle a bit and now I am ONLY taking 1 25 mg pill 3 x day. Oh so anyways this is jsut the begining for me we are going to be tirating up until he feels I am at the right dose. I personally am hoping that I can lower my dose of Oxycontim after a month with this stuff. Am I dreaming? Maybe. Maybe not. I think that if it is already helping that if he gets me to a high enough dose that yes I will be able to cut back the dose of oxycontin. Ok well keep posting me your positive thoughts they have really helped me. Thanks a bunch. I go see the Dr today I let you know if he laughs at me of crys. See ya! Mo
tyler7
06-10-2004, 06:19 PM
MO...
Well I'm so sorry to hear of you dosage mishap. Just glad you're okay enough to be here and talking about it (much less be joking about it :)
Apathy means a complete lack of caring. As in, if a person is apathetic of another person, they don't care a thing of the other's problems, they have no feeling toward them whatsoever (pretty much the total opposite of sympathetic). In the context of being a Topamax s/e, I can tell you my personal experience. Like I said, I was on it almost exactly a month. By week 2, the depression was really starting to hit me hard, and by about the last 5-6 days that I'd end up being on it, that's when the apathy hit, and it was just extreme for in especially the last 2-3 days. I simply had NO DESIRE TO DO ANYTHING. And I mean ANYTHING. I just wanted to sit in a chair and do nothing, had no care or motivation to a single thing. I remember at one point, I was in fact sitting in my recliner watching TV, and my Mom approached and stood in my doorway, rambling on about something, and I recall that I was thinking to myself (and angrily) "Why is she talking to me?!?! What does she want?!?! What is this stupid stuff she's saying?!?! Ok, so now why is she STILL talking?! Why doesn't she just go back to her room?!?!" Mind you, my Mom was simply try to tell me something simple about her day. But I never wanted to talk to anybody. It might sound strange to say this, but thank god I wasn't working during that whole period. I can't even imagine trying to perform a job (whether wherein you're dealing with the public and/or several other co-workers) while feeling like that. I can't imagine that I'd ever feel more miserable in my life than if I would be in a situation like that. And regarding work, I dont think there are very many jobs I'd be able to do anyway, while dealing with the cognitive dysfunction that I did. It's been said a million times, but it's true. You forget the most basic things that you'd known before. It often took me forever to finish a sentence, both speaking and writing. I would do emails, and when finished I'd glance back up and quick go over what was written, and it was astounding how many errors I'd find. If what I had written was a homework assignment in school, and the teacher were to grade it with the classic red pen, the paper would've looked like it was bleeding.
But, thankfully that's all over now. I still have this injury, the Brachial Plexis Neuritis in my right shoulder, but the pain is more or less managed by Methadone (I have been taking 5mg 2x-3x a day, depending on the level of pain, but that level has been going up as of late, so I'm being bumped back up to a consistant 5mg 3x a day next week) and my Neurologist is trying a mixture of anti-seizure (AZ) drugs to help combat the pain as well, the current cocktail is Neurontin and Lamictal.
Obviously, my Topamax experience was not very good at all. Between strong s/e's, and little pain relief. But apparently you are getting a substantial amount of relief from it, and I'm happy for you. Here's to hoping it remains that way (and maybe you even get more) :)
Well I'm so sorry to hear of you dosage mishap. Just glad you're okay enough to be here and talking about it (much less be joking about it :)
Apathy means a complete lack of caring. As in, if a person is apathetic of another person, they don't care a thing of the other's problems, they have no feeling toward them whatsoever (pretty much the total opposite of sympathetic). In the context of being a Topamax s/e, I can tell you my personal experience. Like I said, I was on it almost exactly a month. By week 2, the depression was really starting to hit me hard, and by about the last 5-6 days that I'd end up being on it, that's when the apathy hit, and it was just extreme for in especially the last 2-3 days. I simply had NO DESIRE TO DO ANYTHING. And I mean ANYTHING. I just wanted to sit in a chair and do nothing, had no care or motivation to a single thing. I remember at one point, I was in fact sitting in my recliner watching TV, and my Mom approached and stood in my doorway, rambling on about something, and I recall that I was thinking to myself (and angrily) "Why is she talking to me?!?! What does she want?!?! What is this stupid stuff she's saying?!?! Ok, so now why is she STILL talking?! Why doesn't she just go back to her room?!?!" Mind you, my Mom was simply try to tell me something simple about her day. But I never wanted to talk to anybody. It might sound strange to say this, but thank god I wasn't working during that whole period. I can't even imagine trying to perform a job (whether wherein you're dealing with the public and/or several other co-workers) while feeling like that. I can't imagine that I'd ever feel more miserable in my life than if I would be in a situation like that. And regarding work, I dont think there are very many jobs I'd be able to do anyway, while dealing with the cognitive dysfunction that I did. It's been said a million times, but it's true. You forget the most basic things that you'd known before. It often took me forever to finish a sentence, both speaking and writing. I would do emails, and when finished I'd glance back up and quick go over what was written, and it was astounding how many errors I'd find. If what I had written was a homework assignment in school, and the teacher were to grade it with the classic red pen, the paper would've looked like it was bleeding.
But, thankfully that's all over now. I still have this injury, the Brachial Plexis Neuritis in my right shoulder, but the pain is more or less managed by Methadone (I have been taking 5mg 2x-3x a day, depending on the level of pain, but that level has been going up as of late, so I'm being bumped back up to a consistant 5mg 3x a day next week) and my Neurologist is trying a mixture of anti-seizure (AZ) drugs to help combat the pain as well, the current cocktail is Neurontin and Lamictal.
Obviously, my Topamax experience was not very good at all. Between strong s/e's, and little pain relief. But apparently you are getting a substantial amount of relief from it, and I'm happy for you. Here's to hoping it remains that way (and maybe you even get more) :)
REC73
06-11-2004, 01:18 PM
Keep us posted on how it's going! I took Topamax for about a month and then discontinued it because it made me stupid LOL :) Let's just say i'm a 30yr. woman and one day i went to put my bra on and couldn't for the life of me remember how to put it on.......i just stared at it LMAO!!! Anyway, that's just my experience but if it helps you then more power to ya, everyone reacts differently to every drug.