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  #1  
Old 07-19-2011, 04:07 PM
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topiramate


hi i just posted a post on 7-17 but have some more questions of u good people

i been on topiramate since my seizure, decided to take it after all and after talking to my doctor she advised taking half of my 50 mg......ok my problem is i feel so detached and dizzy like im going to pass out most of the day?! is that normal on this med? i don't like feeling so incapacitated not myself.....doesn't feel the same as like when i had my seizure just different ,like some things aint attached right in the brain.....anyone understand where im coming from? thinking is hard, chain of thought, remembering....jittery.....just awful....
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Old 07-19-2011, 04:59 PM
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Hi TN, what you are experiencing sure may be side effects of Topamax.
The most known side effects are loss of appetite/anorexia and kidney stones. But Topamax can cause many other side effects. Talk to your doctor about it, perhaps changing the dose or another anti-epileptic drug is an option.

Quote :
Topamax works inside the brain and alters the chemistry of the parts of your brain called the temporal lobes. Altering brain chemicals in this are can cause a disruption in a person's ability to think, learn, make decisions, remember words and names, and speak correctly. The higher the dosage, the more likelihood that problems will occur.
The functions most likely to be impaired include:
• cognitive reasoning (thinking)
short term memory (ability to learn new things, store information, and recall events)
• attention (staying focused)
• concentration (thinking clearly)
• word formation (saying the right words)
• and organization of thoughts (what to do next and what is the answer to a question).
Drugs like Topamax can alter brain chemicals and therefore cause these "thinking" functions to become impaired and cause you to act and speak differently than normal. "Dumbing down" may be an appropriate term to use for this effect
Quote :
Trouble Thinking on Topamax? Study Finds “Language Disturbances”


Migraine preventive Topamax (topiramate) has long been associated with trouble thinking, hence the widely used nickname of Dopamax. A recent study indicates that some people have trouble with language while taking Topamax. Some “language disturbances,” as the authors call it, include:
  • Finding words
  • Substituting a word with another unrelated word
  • Taking forever to get a thought out
  • Meshing words
  • Naming objects
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Old 07-19-2011, 11:12 PM
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agreed , soooo many of theese meds do crazy things to people ! i was on topamax for a while but couldnt eat ! i would eat the tiniest little bit of food ( say a side salad ) and it would feel like i had eaten a 12 course meal ! as far as the foggy , head not screwed on right i had a coworker at the time on it as well and she really struggled mentally with it , she said it always felt like she was HALF ASLEEP ... but def talk to your doc , asap
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Old 07-20-2011, 12:24 AM
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Oh no this is kinda scary
I just started topamax yesterday and I'm kind of scared... Kidney Stones?! Really?! I was not told about that -_-

Hang in there Tipsynoodle! You're definitely not alone.
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Old 07-20-2011, 01:56 AM
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Hi Saiyan,

Topamax can cause several kidney problems

Search on 'topamax + kidney' with Google and you'll find: kidney stones / failure/ disease / function / problems / pain .


Quote :
TPM has been shown to inhibit the activity of specific carbonic anhydrase enzymes in the kidney. This action is associated with the development of metabolic acidosis, hypocitraturia, hypercalciuria and elevated urine pH, leading to an increased risk of kidney stone disease.

Read More: http://informahealthcare.com/doi/abs...740338.6.5.547

Quote :
Drink plenty of liquids while you are taking Topamax. This will lower your risk of having kidney stones or an electrolyte imbalance. Call your doctor if you have ongoing vomiting or diarrhea.

Read more:
http://www.drugs.com/topamax.html
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Old 07-20-2011, 11:42 AM
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Hey all,
I would like to say that I have been on Topamax for almost a year now, and have been seizure free, with minimal side affects. So while the possible side affects can be scary, they are not guaranteed. Of course, I was hoping for some weight loss, and that didn't happen with me... Oh well. And I drink a LOT of water, even before I started taking it, so hopefully I will not get the Kidney stones. I do have some problems concentrating, but it is not as bad as when I was taking Keppra. One other thing, I am taking 100mg, twice a day, but my doc started me off real slow. I think it was 25mg twice a day to begin, then slowly ramped up to the 100mg. Maybe your body just needs to adjust to it?
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Old 07-21-2011, 08:13 PM
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topamax


hi,

Started taking Topamax about 2 months ago and I have to say that the fist mounth was the absolute worst! the first week actually was the worst ever. and that was only 25 mgs 2x a day on top of my keppra 1500 mgs 2x a day! there is a reason they call it dopamax! I would be at work and would just be staring into space. And I mean really spacy! Next week went to 50mgs, than went to 75 finally leveled out to 100mgs and have been at 100 mgs. for the last few weeks. It has messed with my cognitive ability a bit though. I have been repeating words and my ability to spell while typing has been messed up a bit. Also my desire for sex was really messed up. I went with the Nueva Ring last month so that seems to have helped with the desire issue a great deal at least for me. My doctor seemed to think that was the best birth control option available for me. Since I was not interested in either the IUD or the Depo shot and a vasectomy was not an option at this time for us. I really think that this is a hormonal issue with my seizures since i only get them at the time around my period. I hope this helps anyone else with these issues : )

Hugs

Tina
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Old 07-22-2011, 06:41 PM
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Tipsynoodle,

Don't worry about drinking enough water. Topamax will make you guzzle water like a woman lost in the desert. I drank a couple of gallons a day. Literally.

I did get a kidney stone. I finally passed it about 6 months after being off the drug. It was horribly painful but over in one night. I took lots of pain meds (oxycodone) and that helped.

If you are particularly worried about this side effect see a urologist now. Ask what you can do to minimize the chances of getting a stone from Topamax.
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Old 07-26-2011, 03:35 PM
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Side effects go with almost all anti-epileptic drug's however some are worse than others. Ask someone close to you to help moniter any changes in personality and be open to their observations. Check with your doc frequently!! Topamax was my personal trip to hell so I am no fan. I lost weight mainly because I forgot to eat or where the food was....not a good diet plan. Memory gone, long time to recover, still a lot of holes. I can't remember if it helped? It is a long and bumpy ride so buckle up
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Old 07-26-2011, 04:56 PM
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My son was on Topamax twice. The first time in combination with valporate and clobazam, the second time (few years later) combined with ethosuximide and clobazam. Both times he didn't loose his appetite, eating went well, but both times he refused to drink. It was hell to get enough fluid in and he was close to a G-tube for not drinking. Both times his drinking normalised after weaning him of Topamax. For his seizures the drug did not help a bit.
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Old 07-26-2011, 05:42 PM
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I have been on both the generic (Topamirate) and name brand of Topamax. I find that the generic has worse side effects than the name brand for some reason. It gave me every single side effect that was listed earlier in the post, to the extreme. The name brand still gives me those side effects just not as bad. Of course, I am on 400 milligrams a day, so. But don't feel like it is not normal because I believe alot of people experience the same things you are.
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Old 07-26-2011, 09:16 PM
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Hi Tipsynoodle,
Ray of sunshine among the bad experiences? I have been on Topamax for over 2.5 years, and had no side effects. Did lose a few pounds as well, nothing extreme though. As with any anti-epileptic drug the first three to four weeks I felt fuzzy and out of it but it wore off.
As for seizures it ended up not being the one for me but for the first two years it was pretty good. No side effects though. Good luck!
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Old 04-18-2012, 06:29 PM
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I've been on Topamax for 2 years (I think). I lost 30lbs in 6 weeks and I didn't really have it to lose. I wasn't prescribed Topamax for Epilepsy because I didn't have it AGAIN at the time. It's for Fibromyalgia. I didn't read all of the posts but I experienced some scary side effects that I want to mention. The pins and needles (Neuropathy), trouble finding words, and brain fog all went away after a few months but it was the depression and serious contemplation of taking my own life that scared me. I lost my job because it changed my personality but I wouldn't get off of it because I developed anorexia and was afraid I would gain the wait back. If you start to feel unusually depressed, talk to your doctor. I haven't had any kidney issues but everyone is different.
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Old 04-18-2012, 09:27 PM
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I'm in my 3rd week of topamax and holy cow it's been wild.1st week I was so STONED which I found hilarious for the first giggling hr until I thought I was overdosing and then I really got scared (and I was only on 25mg day/night with 500mg keppra day/night) 2nd week found me thinking that my arms were lumps of woods and I couldnt see properly,I was walking like a drunk,My feet,fingers,lips and neck all tingle.then came the tears and they wouldn't stop for 4 days-I told my husband I wanted a divorce(not sure why??) week 3 is coming to an end and I've had headaches all week but the tears are gone,I'm not as stoned,just tingly in the fingers every now and then. I think I just have to ride this one out.I have read it can take about 6 wks to start feeling better with topamax.As bad as it's been I feel like topamax could be really good once I settle into it.fingers crossed. anyway.
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Old 04-18-2012, 09:31 PM
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Oh tipsynoodle I'm now up to 100mg morning and night and off the keppra and the side effects have slowed down for me so have faith
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Old 04-19-2012, 10:01 PM
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Kirsty, As someone who also took Topamax for at least a year, I can only suggest that you make a commitment to your husband / family that if they notice serious changes, that you will listen and act on it. I waited too long. I argued that it was working meanwhile my brain was erasing my memories...I was lossing weight but I was loosing my mind as well. I could not see what my family was seeing. I finally started to get it when I could not remember the words to Silent Night...Of course my neurologist at the time said "not possible, the label doesn't say anything about that." He is no longer my neurologist. I have continued to play the 'pick a med' game but I do recognize my husband again when he walks in the door. I know we all must try to find the right one but we also have to be careful, we are not always the best judge of personality changes...good luck!!
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