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What Are/Were Your Topamax Side Effects


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im happy to say i didnt really have much in terms of BAD side effects...

initially i had the 'everything carbonated tastes like shit!' and my taste for coffee really disappeared.  but that came back once i got passed 150mg.

i also lost about 13lbs. it completely levelled out, though.

also, my cravings for alcohol disappeared.  not that i dont want to drink at all...but i certainly dont want to drink as much as i used to.

when i got to 300mg, i found that i was having a hard time waking up in the morning - although it wasnt putting me to sleep. i guess once i DID fall asleep i was falling into a real deep sleep. who knows.

that's about it. i wasnt one of the ones who got the stupids, although it does happen a lot to others.

tal.

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Hi all,

Thanks for helping me learn all I can from you about my newest drug, Topamax.

Did any of you find you couldn't tolerate it? Did it make any of you worse? Has it helped any of you? I'd be grateful to read anything you're willing to share!

Thanks,

JB

<{POST_SNAPBACK}>

hi i used to take topamax 75mg with 600mg trileptal.  it didnt really help me at all except to quit smoking, which is kind of odd side effect.  other than that, nothing too bad with side effects, after about a week or two of just feeling weird adjusting to it, i got used to everything.

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Ar first, all soda pop and ranch products tasted very...rotten...then that went away...I had tingles all over my hands and feet and lips! I still get them on my fingers if I go in the house from being out in the extreme cold...

I can drink coffee, but every once in a while, I have to cut down or stop for a few days, because it gives me a real racing heart beat, like a panic feeling...I dont know why it does this.

When I first started on it, I also had a big urge to quit smoking, I did quit for some time, but then my urge to smoke came back...so I dont know about that one either...weird.

The only other effect I can think of that Topamax has had on me, is the effect on my speaking/writing/ quick thinking skills..its improved alot since the begginning...but I still have trouble sometimes. I used to be abler to spell alot better...but now I find myself looking at a word for the longest time thinking "Did I spell that right?"...other times I'll be talking and I'll say the wrong thing and completely make an ass out of my self...funny but annoying at the same time. As I said, this has improved. You shouldve seen me in the begginning...

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Hi all,

Thanks for helping me learn all I can from you about my newest drug, Topamax.

Did any of you find you couldn't tolerate it? Did it make any of you worse? Has it helped any of you? I'd be grateful to read anything you're willing to share!

Thanks,

JB

<{POST_SNAPBACK}>

I take it for migraines and seizures. I lost a LOT of weight (25+ lbs), which was initially a good thing. It sucks now, cause my thyroid went kaput thanks to chemo, and the whole appetite surpressant bit means I'm eating like crazy just trying to hover at 90lbs.

I've been on 100 mg for well over almost two years, but since finishing chemo a few months ago, it doesn't seem to be working as well for headaches. This may also be 'cause I moved to a new state. Thinking about upping the dose, but not sure how safe that is...

Anyhoo, my worst side effect was terrible, debilitating stupidity for about a week.  I was stuck in my apartment for two days 'cause I couldn't figure out how to unlock the door.  I forgot the colour green (you know... that colour that grass is... it isn't funny, dammit!), and my dyscalculia got worse. I still have trouble remembering...things...with letters...I'm writing them...WORDS! It's almost like behavior I've seen in patients with avanced pre-frontal brain tumors. Aspasia, wot?

The worst of it passes quickly, and what lingers is amusing for others, but immensely frustrating for me.

Hubby has learned to interpret, which helps.

But, still, grrr...

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I was on it for about 6 months for migraines (which didn't work for me).  The first noticable s/e was the taste of anything that had caffeine and carbonation - Coke, Pepsi, Dr Pepper.  I could drink tea, Sierra Mist, Sprite, 7Up though.  I never had a problem with coffee, but I drink decaffinated.  Then came the numbness in my hands and feet, that one never really went away.  Then the inability to remember simple words.  I would forget what I was talking about in the middle of a sentence.  I began calling things the wrong names (like a copier would be a computer).  I worked in accounting, and soon numbers became foreign things to me.  I had to keep a sticky note pad with me all the time to write things down or would surely forget them.  I literally became 'dumb as a bag of rocks'.  I did lose about 15lbs the first month or so, that was nice.  I didn't have the weight loss effects at higher doses.

I started at 12.5mg and increased this until I was at 75mg.  I couldn't get out of bed, was really achy and sleepy all the time.  My neuro told me to back down to 50mg.  That solved that problem but since I was taking it for migraines, I needed to get to 100mg.  Once I started to split my dose, half in the morning and half at night, the 'stupid' s/e's lessened.  I finally got up to 100mg but since it wasn't working for the migraines, I stopped taking it by lowering the dose each week or so.  I really wish it had worked for me.

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  • 2 weeks later...

The first time I was on it for migraine prophylaxis, I had the normal 'everything carbonated tastes like shit' side effect and I couldn't eat anything sweet; I just didn't want it. I lost 13 pounds!! After I got up to 100 mg qhs I did have the occasional case of the stupids. I'd say or write the wrong word (I can't give any examples because I never remember them). I also had the tingly feelings in my hands, feet and face. Then, I got a bad UTI--my first ever--and instead of going to the doctor (because I'm scare of having to get a pelvic exam -- I'm 21 and never had one -- I took AZO and drank a ton of cranberry juice. A week later it was worse. I couldn't pee AT ALL. I went to the doctor and barely gave them enough urine for a urinalysis. This went on for four days until I passed a very small kidney stone. When I went back to my neurologist and told her about it, she tapered me off the Topamax, even though it had put a stop to the headaches that I'd been having for over a year.

Positive effects: I didn't SI the entire time I was on it. I didn't want to. I could actually handle feeling things.

Now I am back on it after an 11 day stay in a short term facility. I am on 25 mg twice a day (I want to go up to 50 mg twice a day). My doc put me on it because I said it helped with my urges to SI and to combat the weight gain that can come from Remeron and Seroquel (even though I've been on them since June and not gained a pound). The only bad side effects I have now are the tinglies in my hands, feet and face--when I'm cold. When my feet fall asleep it HURTS. And my taste for sweets/carbonated drinks is gone again. That's not a bad thing though--being diabetic and all. I love Topamax.

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  • 2 weeks later...

Dude, okay. I lost, get this, 86 lbs. Dropped from a size 28 to a size 20.

And keep loosing. Considering I was pushing 350, this is a GOOD THING. Probable cause? I used to drink a case of pepsi a day. Now I hate Pepsi with a burning passion generally reserved for when your sun goes Nova. And I've learned that high fructose Corn Strup is the evil of all evils in the american diet.

I've been on it for six months at 200 MG a day. It kicked my moods over into pretty much stable (for me, this exquals "only sort of a spaz and real annoying rabid activist with a loud mouth" all the time, as opposed to periods of also doing stuff with nuns and Quakers at Fort Benning that could get me sent to federal prison-Activism, you gutter minds), and made the siezures go buh-bye.

It also still makes random body parts go buh-bye, too, and that's kinda disconcerting. Always weird ones too. Like, my right four toes. Or the backs of my kneecaps. My left hand (for eight minutes). The very bottoms of both feet, just the parts under the callouses, but not the arches. A 6x8 inch patch on my thigh. My right cheek. Not all at once, and not every day, just kind of randomly. And often enough to be irritating. Opps, there goes my (fill in the blank), it'll be back presently.

As for the word aphasia, well...being epileptic AND ADHD, I use the words "whatsit", "doohikckey", and "fuckcheese" pretty often when I forget what it was i was taking about anyway, so it's kind of like Ronald reagan having Alzhiemers; how the hell can you TELL? Although, talking the fine advice of Kassiane, I titrated up REAL slow, and seem to have dodged the worst of that side effect.

So all in all, I'm pleased as punch with this stuff. It works. And my pants keep falling off.

;)

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Just to add to the library...

I had the tinglies in my hands and feet.  Went away after about a year or so but still comes back every so often.  Carbonated stuff tasted funny but I would still drink it anyway if I wanted too.  Most food still tasted the same but I had no interest in it.  Had to really force myself to eat.  Lost around 15-20 pounds? That all came back though (later/now) because my partner is a chef and she doesn't let me get away with skipping meals and all of my bad Topamax behaviour.  A lot of the time I can still kind of forego food but my appetite has returned somewhat.

Ironically, I had the paradoxical reaction to want to smoke more when I first started the drug! That was funny.  I was like smokey the freakin' bear only a little tiny hairless female version.  Okay.  Maybe that's not really funny.  That makes no sense.  And to make a nice segueway...Topamax made me really fucking STOOPID.  I mean, I've had cognitive impairment issues with just about every med I've been on, even ADs but holy.  One day, my brain actually grinded to a halt.  I mean, it just stopped.  At first, I thought it was funny.  Then, it became really annoying and started to make me angry.  Then, it became downright frightening! It was like I had some form or Alzheimer's or dementia.  It was downright bizarre.

And clumsy.  Holy crap.  Not quite as bad as Lamictal that made me look like I'd consumed a case of beer before breakfast but still...I'm a lot more klutzy than I've ever been in my life now thanks to the joy of anticonvulsants and (yay) Topamax.

No weird dreams, doesn't make me tired.  Oh yes, my titrations made me manic too! Whee!

Karen

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Hi all,

Thanks for helping me learn all I can from you about my newest drug, Topamax.

Did any of you find you couldn't tolerate it? Did it make any of you worse? Has it helped any of you? I'd be grateful to read anything you're willing to share!

Thanks,

JB

<{POST_SNAPBACK}>

Hey JB

Ah, yes, the supermodel drug, Dopamax. Makes you skinny and stupid. I lost about 25 pounds and became a zombie. I dropped out of college for 18 months due to loss of cognitive ability. Worst of all, I became increasingly more depressed than when I started. I was passively suicidal. At the time, death seemed like the only escape. My pdoc is a huge fan of Topamax and I guess that's why I stayed on it so long. After I realized I was slowly killing myself or was going to kill myself, I stopped taking it. I believe there has been permanent memory problems since the Topamax. I used to be so bright, so quick to understand complicated problems.

I've been taking Lamictal since May and this is the most stable I have been.

Obviously my experience with Topamax represents the negative side of the spectrum. I know it is a miracle drug for many folks and I hope it works for you.

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Dude, okay. I lost, get this, 86 lbs. Dropped from a size 28 to a size 20.

<whimpers> I had to stop it because even at a low dose, I lost weight, but it made me depressed. And, I uh, have never been depressed. So had to stop it.

damn.

Back in the pool!!!!!!!!!!!!!!!!!!!!!

Breeze

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