United Brachial Plexus Network, Inc.

I was looking for side effects of topamax, when I ran across this board, and have been reading every post on this topic and just wanted to add my two cents ( and believe me, this is about all I have left at this point)

I started topamax in November 2003, 25 mg, and increasing by 25mg weekly til I reached 200 mg,daily which was to be taken at night. (as of 2 weeks ago, I have increased to 200 mg twice a day)

The very first night I took it,( the first dose of 25mg) i had a horrible itching sensation all over my body, even on my head and the bottom of my feet, but I dismissed it, because I also suffer from allergies.

After the second night, I awoke the next morning with my eyes swollen shut, (this probably should have told me something) but i still dismissed it as allergies, I am allergic to about everything, soaps, washing powders, fragrances, pet dander, dust, pollen, you get the picture, so it is hard to pinpoint what was really causing the flare ups.

Since November, I have thought I was losing my mind, I have noticed that I am more forgetful, which has steadily gotten worse and worse over time ( to the point I have to repeatly remind myself when driving more than 20 miles away from home, where I am going, so I dont forget, which in turn causes panic attacks) also, I am in school, and having a difficult time in math, even though i come home and do the homework and have no problem with the new material taught and learned that day, (however, when it comes time to study for a test, its like looking at a foreign language, like i have never seen it before) but this seems to be more significant in things that require a step by step process of thought. Also, Mental confusion, I easily forget things, and must be reminded, even sometimes having to write down what time I put things in the oven, so as I know what time I put it in, so I know how long it cooked, ( i know that sounds crazy, but if you experience the mental confusion, as i do, you know full well what I mean)

I was having difficultly with my legs and arms going numb and falling down, before the medication, but as of sunday nite, while in walmart, with about every 5 steps, 3 out of those 5, my knees would give, (legs would buckle), and i thought to myself, if i were watching someone else, doing that, i would think they had been drinking. I have oscillations (rocking back and forth movements, mostly mine are when standing still) I have to hold on to the wall when on the elevator or I will fall, When i wash my hair in the shower, i have to hold on to the wall, with one hand to maintain my balance, granted, I had some degree of these symptoms prior to this medication, but since beginning the medication, they have progressed at a very rapid pace that it actually terrifies me that I will not be able to care for my family and may lose my mind, end up in a home or even worse, die.

I have also recently noticed eye jerks or tremors, usually only lasting a few minutes or so, but one day, lasting most of the day.

sexual desire? what is that? I no longer care if my husband is in the same room with me, much less if he touches me.

So i started thinking, it had to be the topamax, that is the only thing that i have been doing differently, and i quit taking it 2 days ago and i already feel like a cloud has disappeared from around my head, it may not stay gone, because after reading here and other places, i got worried about not taking it, and stopping it cold turkey and went ahead and took 1, and figured i would taper myself down from 2, 200 mg per day, to 1 200 mg a day for this week, then next week, when i see my doctor on tuesday, discuss, breaking the 200 mg in half, so i am only taking 100mg (hopefully that will work) I hope all is not lost and i will regain what i have lost, i hate to think, i have to live the rest of my life this way, even if i dont continue the medication.

I know this is a pretty long post, and i still know there is so much more that i am forgetting, and later, it will hit me, but if anyone would like to talk with me, feel free to email me, I sometimes dont check my emails as often as I would like, but i do check them. I guess i should mention that i am taking topamax as an aid for pain relief, i suffer from sensory motor polyneuropathy, and osteoarthritis, and yes i have lost about 18 pounds since december (november nothing came off) the weight loss part was an added benefit, but i would rather have kept the weight, and my sanity, peace of mind, and happiness, and just have lost the pain that the topamax was supposed to have helped....I have noticed a change in the taste of any foods or carbonated drinks, although the neurologist did mention that carbonated drinks woulds start to have a metal like taste to them.......thanks for letting me vent on your site, take care, good luck, and God Bless you all.....christy

I was looking for side effects of topamax, when I ran across this board, and have been reading every post on this topic and just wanted to add my two cents ( and believe me, this is about all I have left at this point)

I started topamax in November 2003, 25 mg, and increasing by 25mg weekly til I reached 200 mg,daily which was to be taken at night. (as of 2 weeks ago, I have increased to 200 mg twice a day)

The very first night I took it,( the first dose of 25mg) i had a horrible itching sensation all over my body, even on my head and the bottom of my feet, but I dismissed it, because I also suffer from allergies.

After the second night, I awoke the next morning with my eyes swollen shut, (this probably should have told me something) but i still dismissed it as allergies, I am allergic to about everything, soaps, washing powders, fragrances, pet dander, dust, pollen, you get the picture, so it is hard to pinpoint what was really causing the flare ups.

Since November, I have thought I was losing my mind, I have noticed that I am more forgetful, which has steadily gotten worse and worse over time ( to the point I have to repeatly remind myself when driving more than 20 miles away from home, where I am going, so I dont forget, which in turn causes panic attacks) also, I am in school, and having a difficult time in math, even though i come home and do the homework and have no problem with the new material taught and learned that day, (however, when it comes time to study for a test, its like looking at a foreign language, like i have never seen it before) but this seems to be more significant in things that require a step by step process of thought. Also, Mental confusion, I easily forget things, and must be reminded, even sometimes having to write down what time I put things in the oven, so as I know what time I put it in, so I know how long it cooked, ( i know that sounds crazy, but if you experience the mental confusion, as i do, you know full well what I mean)

I was having difficultly with my legs and arms going numb and falling down, before the medication, but as of sunday nite, while in walmart, with about every 5 steps, 3 out of those 5, my knees would give, (legs would buckle), and i thought to myself, if i were watching someone else, doing that, i would think they had been drinking. I have oscillations (rocking back and forth movements, mostly mine are when standing still) I have to hold on to the wall when on the elevator or I will fall, When i wash my hair in the shower, i have to hold on to the wall, with one hand to maintain my balance, granted, I had some degree of these symptoms prior to this medication, but since beginning the medication, they have progressed at a very rapid pace that it actually terrifies me that I will not be able to care for my family and may lose my mind, end up in a home or even worse, die.

I have also recently noticed eye jerks or tremors, usually only lasting a few minutes or so, but one day, lasting most of the day.

sexual desire? what is that? I no longer care if my husband is in the same room with me, much less if he touches me.

So i started thinking, it had to be the topamax, that is the only thing that i have been doing differently, and i quit taking it 2 days ago and i already feel like a cloud has disappeared from around my head, it may not stay gone, because after reading here and other places, i got worried about not taking it, and stopping it cold turkey and went ahead and took 1, and figured i would taper myself down from 2, 200 mg per day, to 1 200 mg a day for this week, then next week, when i see my doctor on tuesday, discuss, breaking the 200 mg in half, so i am only taking 100mg (hopefully that will work) I hope all is not lost and i will regain what i have lost, i hate to think, i have to live the rest of my life this way, even if i dont continue the medication.

I know this is a pretty long post, and i still know there is so much more that i am forgetting, and later, it will hit me, but if anyone would like to talk with me, feel free to email me, I sometimes dont check my emails as often as I would like, but i do check them. I guess i should mention that i am taking topamax as an aid for pain relief, i suffer from sensory motor polyneuropathy, and osteoarthritis, and yes i have lost about 18 pounds since december (november nothing came off) the weight loss part was an added benefit, but i would rather have kept the weight, and my sanity, peace of mind, and happiness, and just have lost the pain that the topamax was supposed to have helped....I have noticed a change in the taste of any foods or carbonated drinks, although the neurologist did mention that carbonated drinks woulds start to have a metal like taste to them.......thanks for letting me vent on your site, take care, good luck, and God Bless you all.....christy

I recently started taking Topamax for migraines and chronic headaches. I wanted to get on this drug because I heard is was good for the headaches and good for losing weight. I started at 25mg and increased it each week up to 100mg a week ago. My pain isn't quite as bad as many others describe here, but I believe it is helping quite a bit. I too came to this forum and got a bit scared reading all of this. And from reading it and sharing it with a friend, we start watching and looking for the syptoms, and almost began seeing them kinda like a selffulfilling prophesy. Each persons reaction to any medicine is different. Each person is different. We all have different body makes, other illnesses, other medications, lifestyles, etc. that all factor in to how we will react to a new drug. I say give it a try, if it doesn't work stop taking it as soon as you can, some symptoms do go away after awhile. Fortunately, I do not have any bad ones. Some tingling in my feet, legs feel like they won't relax at times and want to jerk, and very very dry mouth and thirsty all the time. No weight loss, I did lose appetite for awhile, but unfortunately it came back!!!

I have been on topamax for facial pain/sinus migrains for 2 1/2 months just upped to 150mg every night. Age 26. The side effects were tough dizziness, attention problems, lost 15 pounds in 2 months (sweets do not taste very good(but to me this is a good thing because they are not good for you anyways) (some of this was gained from failures from other medications that caused me to gain weight), pins and needles in my feet. But,the side effects got much better after a reached my maximum dose after 2 months. If you can hold out for 2 months after reaching the maximum dose, the side effects shouuld start to taper off. I had a constant undiagnosed migrain for almost a year, and finally this medication is the one that is helping me. I would rather have a few side effects and be able to fuction and work, then to have to go home early everyday because my pain is too bad.

hello i was wanting to know how topamax worked for you. did it help with your mood and did you lose any weight. please let me know thanks teresa

Hi;
I started Topomax about two and a half weeks ago for chronic pain, as I have pressure ulcers from riding a wheelchair. The doctor said it was very good for nerve pain, which is what I have do to the wounds, but I am really not at all happy with the side effects I am having. Numbness in the arms and legs, memory loss, trouble grasping things with my hands, night sweats, swealing, and other things. Not to even mention the cost, which is through the roof! I am on a very small dose. I started on 25 mgs a day and am now up to 50 mgs.
I am considering stopping the drug for all of the reasons I have listed above but the drug gives very strong warnnings that you should not stop it all at once and you said you took yourself off of it. How did you do it, and did you have any withdrawl symptoms? Thanks for the help in advance.

Aradia4444

I am 1 wk into Topamax with my 8 yr. old( Seizures), she started at 12mg in the pm. I increased last night to 25mg in the pm. She is on Neurontin and has tried Trleptal, Lamictal and Keppra all were discontined due to awful side effects. Not sure what is worse a seizure or the drugs to treat them. I am not comfortable with Topamax from what I have read. Depending on what I see when do I say No to this drug? At the first sign of problem side effects?

Hi!
I just started topamax for migraines. I'm taking 25mg at night, but I have to work my way up to 100mg a day. Have you found any information on how long it takes for the drug to leave your system once you stop taking the medication? I'm only suppossed to take it for 6 months, but I want to start trying to get pregnant next year. Please forward me anything you've found!
Thanks!

Eric...I was reading your posting and wondered if you ever got your sensation back. I have had the same experience recently and am still waiting (hoping) for it to come back. Thanks for replying.

i've been on topamax for some time to treat daily chronic migraines accompanied either by complex partial seizures or auras with temporary impairment of motor skills, confusion, and partial paralysis/numbness. i'm on this with a combo of three other drugs. the first time i was given topamax i went off after a month because i couldn't deal with the tingling/numbness and actual pain in my extremeties, including my tongue. but this time, my doctor suggested eating foods high in potassium such as oranges and bananas, or taking potassium supplements. this helps till the side effects wear off. and eventually they do. now i occassionally get tingling in my feet, but not too often and not so that it bothers me much. as for weight loss, i gained ALOT of weight on amitriptalyine and other seratonin enhancers for migraine treatment, but since the topamax i have lost 10 kilos since November 2003 without trying (it's now April 04). i'm starting to watch what i eat now, meaning making sure i don't skip meals and get enough to eat. so beware!!!
michelle