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Old 09-11-2007, 04:23 PM   #1
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Looking for Positive feedback on Topamax!

I went to the doctor today and he may be putting me on Topamax. I will know in the morning. He wants to consult with my PCP before making the switch from Keppra. Doctor said that it is a mood stabelizer as well as anti-seizure.

PLEASE any POSITIVE feedback I would appreciate.

Thanks,
Jane

 
Old 09-11-2007, 07:26 PM   #2
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Wink Re: Looking for Positive feedback on Topamax!

Well, I just started it two months ago and I am down 20 lbs. (which I've been struggling to lose for so long) and I find that it does not make me tired at all. I did have pretty bad stomach problems but it is finally resolving. I plan on staying on this medicine as I have not had any cognitive problems as others have had. I also have a few more pounds to lose, lol.

Initially, I had the tingling in the extremities (common side effect), similiar to hands and feet falling asleep simultaneously, but that dissipated after a few weeks. If you can stick it out after the initial few weeks, you may find it to be a very tolerable drug. I plan on staying on it as it's really controlling my weight....and oh... as a plus, it's completely controlling my seizures as well, LOL.

 
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Old 09-12-2007, 03:19 AM   #3
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Re: Looking for Positive feedback on Topamax!

Thank you for the feedback. I do have some weight to lose as I have gained quite a bit on other meds.

Did you have any anxiety or hyper problems when you started? How much do you take?

 
Old 09-12-2007, 03:33 AM   #4
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Re: Looking for Positive feedback on Topamax!

Nope, I am not on any anxiety or hyper meds at all. Now that all the side effects have FINALLY settled down, I am SO pleased with this drug. I just got off the scale and lost and additional few pounds. I know that other AED's do cause weight gain which is why this drug was such a blessing for me. And the added plus of no fatigue was such a bonus. I guess it's different for everyone, but that's just the way I reacted to it.

I was so encouraged by this weightloss and newfound energy, that I recently took up a daily walking routine with my daughter. That's something that was formerly impossible with the severe claudication in my legs. I am currently on 100 mg./2x day. I hope this puts some of your concerns to rest.

Last edited by life_is_good; 09-12-2007 at 03:35 AM. Reason: spelling

 
Old 09-12-2007, 06:45 AM   #5
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Re: Looking for Positive feedback on Topamax!

thank you so much - I feel really good about trying this med.

I do suffer from anxiety and panic so that is why I was wondering if you had any of those side effects.

 
Old 09-12-2007, 08:00 AM   #6
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Re: Looking for Positive feedback on Topamax!

Please let me know how you do with this drug. Best of luck to you.

 
Old 09-12-2007, 12:15 PM   #7
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Re: Looking for Positive feedback on Topamax!

I just started this about 3 weeks ago , and will be on the last weekly increase (25mg a week increase each week for 4 weeks- then start decreasing Tegretol by one pill, then see neuro) this coming Friday. I'm very tired the first 3-4 days (the first week, my vision was a mess, but it cleared up and didn't get weird with any additional pills). I have had fluctuations in appetite, but I"m still on a puny dose, so don't expect to see any of that yet. I don't have the energy yet (am on 16 different meds/ 25 pills/day), so a lot of variables to consider.

I really haven't had many problems- more of a "whatever' attitude, and feeling stupid....that's decreasing, and now, I'm just tired. I expect that will even out when I quit upping the dose and finally reach maintenance.

 
Old 09-14-2007, 08:08 AM   #8
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Re: Looking for Positive feedback on Topamax!

I've been on Topa. since March '06 as an add-on med. It works very well for me. Once you've reached your therapeutic level, it's pretty smooth sailing. It's most important that you drink lots and lots of water, though--it helps with the "tinglies" and the brain fog you may feel. Plus, as TOpa. is processed through your kidneys, you're supposed to drink a lot to keep the kidney stones away.

It is sort of a "mood stabilizer" as it is prescribed to some people who are bi-polar or have behavioral disorders. It is also prescribed for peeps who suffer from migraines. I take 400 mgs a day for seizure control (in addition to 3,000 mgs. Keppra...oy I'm tired!) and my sister takes 25 or 50 mgs (can't remember) for her migraines. See... It's kind of an all-around wonderdrug!

Good luck and drink lots of water...chug chug chug! (that'll also aid in weight loss)
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Last edited by dogmom; 09-14-2007 at 08:13 AM.

 
Old 09-14-2007, 01:37 PM   #9
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Re: Looking for Positive feedback on Topamax!

Thank you for all the positive post.

Dogmom, when you say brain fog do you meant he forgetfullness etc?

I have brainfog with the keppra but i also suffer from another brainfog that i feel like I am in a fog. Like I am in a dream of some sort. Do you mind explaining your fog?

I am really excited to change to this med now that I have heard all the wonderful posts.

 
Old 09-14-2007, 02:38 PM   #10
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Re: Looking for Positive feedback on Topamax!

What I mean by "brainfog" is the occasional forgetfullness, like, forgetting how to spell forgetfullness. ha ha! Kidding.

Seriously, there are times when I'll be talking and I will forget a word in mid-sentence. Friends have nicknamed me the "wait for it woman" because I'll be telling a story and just stop, hold up a finger and say, "Wait for it...." while I search for the word I'm looking for. It's a common side-effect of Topamax. It's really not that bad of a side-effect considering all of the good the drug does! PLUS, as I mentioned, the brainfog is reduced greatly, as are the tinglies and fatigue, if you stay hydrated.

Don't just drink water, though, you need your electrolytes. So in addition to drinking a lot of h20, stock your fridge with a sports drink like gatorade or propel or something like that.

I had my Topa. "brainfog" under control by staying hydrated...then my doc switched me from Lamictal to Keppra in March so I can SO relate to that "different" brainfog you have experienced on Keppra!!!!! (not to mention the pure exhaustion.)

p.s. I notice you're from Beantown...I was born in Peabody! I lived in New England until 1993! Go Red Sox! Got Pats!
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Last edited by dogmom; 09-14-2007 at 02:43 PM.

 
Old 09-14-2007, 04:01 PM   #11
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Re: Looking for Positive feedback on Topamax!

I'll add on to the brain-fog..

I had that when starting up on Topa. I was typing online twice, once on the phone (that was not fun). I was composing an email and I totally lost my train of thought. It was like my mind was wiped clear. I had to walk away from the computer for 5 minutes then come back and I could continue. Same thing happened on the phone call. I forgot what I was talking about. It was as if I stalled. I was able to get out let me call you back. I called back in a few minutes and explained what had happened.

It does NOT feel anything like a seizure, no symptoms that I would usually feel. Just the loss of chain of thought.

Have not had it (those symptoms) since becoming stable on my dose.

--Travis

I don't want to sound negative on Topa. It has been very good in controlling my seizures. However what I say is neither positive or negative. It is what I have experienced on it. Thats why I have kept idle on this thread. Most of what I may say could be taken in either direction from my ordeals.

 
Old 09-14-2007, 06:23 PM   #12
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Re: Looking for Positive feedback on Topamax!

Quote:
Originally Posted by dogmom View Post
What I mean by "brainfog" is the occasional forgetfullness, like, forgetting how to spell forgetfullness. ha ha! Kidding.

Seriously, there are times when I'll be talking and I will forget a word in mid-sentence. Friends have nicknamed me the "wait for it woman" because I'll be telling a story and just stop, hold up a finger and say, "Wait for it...." while I search for the word I'm looking for. It's a common side-effect of Topamax. It's really not that bad of a side-effect considering all of the good the drug does! PLUS, as I mentioned, the brainfog is reduced greatly, as are the tinglies and fatigue, if you stay hydrated.

Don't just drink water, though, you need your electrolytes. So in addition to drinking a lot of h20, stock your fridge with a sports drink like gatorade or propel or something like that.

I had my Topa. "brainfog" under control by staying hydrated...then my doc switched me from Lamictal to Keppra in March so I can SO relate to that "different" brainfog you have experienced on Keppra!!!!! (not to mention the pure exhaustion.)

p.s. I notice you're from Beantown...I was born in Peabody! I lived in New England until 1993! Go Red Sox! Got Pats!
Thank you so much for responding. Truly appreciate it.

And yes Go Sox and Pats!!!

 
Old 09-14-2007, 06:26 PM   #13
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Re: Looking for Positive feedback on Topamax!

Quote:
Originally Posted by Travis from MN View Post
I'll add on to the brain-fog..

I had that when starting up on Topa. I was typing online twice, once on the phone (that was not fun). I was composing an email and I totally lost my train of thought. It was like my mind was wiped clear. I had to walk away from the computer for 5 minutes then come back and I could continue. Same thing happened on the phone call. I forgot what I was talking about. It was as if I stalled. I was able to get out let me call you back. I called back in a few minutes and explained what had happened.

It does NOT feel anything like a seizure, no symptoms that I would usually feel. Just the loss of chain of thought.

Have not had it (those symptoms) since becoming stable on my dose.

--Travis

I don't want to sound negative on Topa. It has been very good in controlling my seizures. However what I say is neither positive or negative. It is what I have experienced on it. Thats why I have kept idle on this thread. Most of what I may say could be taken in either direction from my ordeals.
You don't sound negative at all about this med. I have that symptom with any of the meds I try. And it did get better with the keppra - I really can;t wait to try the tpmx. Thanks for your response.

 
Old 09-14-2007, 09:59 PM   #14
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Re: Looking for Positive feedback on Topamax!

The only thing I hesitate on Topamax is after my initial dose (100 AM and 100PM) I was fine. Once I was increased to 100 and 200 I had the appitite issues kick in (supression). I had to learn how to adapt to the medications effects on the mind.

Basicly, the medication tells the mind you are not hungry. Thus the appitite supression effect. It also effects out ability to EAT normally. When we would normally eat (in my case) 2 meals a day I could go 2 days WITHOUT eating and not feel hungry. Obviously I noticed this was wrong and had to force myself to eat. That is MY downside with the medication with MY dossage (400/day).

NOT every patient has this problem. I live alone and prep my meals alone. Thus the problem I am the one who is responsable in my case. However, the eating supression is something that often cannot be ignored.

I insist on keeping myself on this medication due to how it has supressed the seizures. I'll battle the side effects. I just want you to be ware of the potential negative effects that Topamax is known to produce.

I am not trying to scare you or others, just providing my case.

--Travis

FYI I am also on Keppra (2625mg/day) and Teg XR (1200mg/day)

 
Old 09-15-2007, 04:02 AM   #15
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Post Re: Looking for Positive feedback on Topamax!

Travis,

You hit the nail on the head with your post. I am on half the dose you're on and was experiencing the exact same problem. I wasn't hungry, therefore I was not eating - AT ALL. Eventually, I had to literally force myself to eat, even though I was not hungry in the least. I had ZERO appetite, and the longer I went without food, the less I wanted to eat.

The stomach issues kicked in bigtime and it was a vicious cycle for me. The bloating, the stomach pains, the bathroom visits were awful. I did some damage to the lining of my stomach from not eating and had to go on a liquid diet and a bunch of medications until my stomach would heal. I am currently up to soft foods and working my way back to solid foods now. If you know from the start that you need to continue to eat regardless whether you're hungry or not, then you can avoid the issues I had. But as another poster had mentioned, you MUST continue to drink liquids as kidney stones are a common side effect...and in my case - significant dehydration.

I learned my lesson the hard way and am hoping to help others learn from my mistake. My best advice is: Continue to eat and drink while on this medication and you'll be fine.

Last edited by life_is_good; 09-15-2007 at 04:06 AM. Reason: clarification

 
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