United Brachial Plexus Network, Inc.

I have been taking Topamax for migraines for the past 6 weeks and am now up to 125mg per day. I too have lost my appetite (along with 15 pounds) although food doesn't taste bad to me, I just don't want to eat it. The most annoying part is that I lose words in the middle of sentences and I am an elementary teacher and this is very inconvenient. I also forget things a lot. I find that if I concentrate on what I am saying I tend to not forget things as much. Also I write notest for the really important things. But the real pain is that because I am drinking so much water to prevent the kidney stones, I end up getting up 3-4 times a night to go to the bathroom. But, the headaches have gotten less frequent and the ones I have had have been less intense and required less medication so I guess it is all worth it.

will side effects ever stop

Susanna, I am just like you 5'2 and 110. I too am concerned about the weight loss. How have you been doing? Are you still taking the topamax, and at what dosage? Have you lost any weight since you started taking it? I just started taking 25mg for nerve damage due to surgery. My dr wants me up to 100mg in 4 weeks. Do you have any advice for me?

What a relief reading some of these side effects of this drug they call Topamax, I was at the Mayo Clinic in MN for Epilepsy a month ago, and was put on this drug and was informed of the side effects; memory loss, slurred speech, ect. However no MD, ever informed me that I would hear voices in my head. For the past month or so I have been feeling as though I have been going crazy. I have told no one of the way I have been feeling, I am a 27 year mother and wife of two, that has been afraid to be alone with my children because of the voices in my head. I am in a Management position where I need to speak to people and I have been having panick attacks because of what I might say or think when I hold a presentation, I found this website about 2 hours ago and crying ever since. I have never had any type of emotional disorder, and I never associated these thoughts with my medication, although I tell you what tomorrow morning my doctor will be receiving a call from me, and I will be going off these meds. On the flip side, since I have been taking these drugs, I do fit back into a size 6? Although what good is a body if you don't have a mind to go with it? People need to be made aware of these side effects, they are not fun, not enjoyable, and I am going to thank the Lord that I found the Website! My only advice for people that are on it, DO NOT TAKE IT!

My neurologist put me on Topamax for migraines and chronic daily headaches. I started out at 25mg and then went up to 50mg after two weeks as per his instructions. I had so many side effects right off the bat which all worsened when I went up in dosage. I still experienced daily headaches and even sometimes knew that the headache I was having was being "battled" inside my body and could easily have been a migraine. When I went in for a 6 week evaluation I started rattling off all of the side effects I was having: terrible fatigue (had to take a two hour nap every day after work so that I could function for a few more hours before bedtime), extreme thirst, loss of appetite, weight loss of 7 lbs in 4 weeks (I am already thin and can't afford to loose weight), constant terrible taste in my mouth, shakiness and nervousness, slight tremors, mood swings, wierd thoughts, my eyeballs felt wierd, constant sinus pressure feeling, hair loss (and more)...My doctor asked me how I was handling all of this and made the comment "you have a lot of side effects". I told him that I was handling it ok but I didn't know about the people around me because of the drastic change in my personality. People thought I was constantly mad at them, my friends and family told me I was very wierd. I was having thoughts of worthlessness and kept thinking that my family would be better off without me. About a week and a half later after my visit I began having this strange "vision" problem where I was seeing tracers. It was not my eyes (vision) but my brain "seeing" these tracers. I called my doctor who told me he was taking me off immediately and to taper off within the next few days. I did and have now been Topamax free for about 2 weeks and am starting to feel back to my normal self (halleujah!). It obviously wasn't for me and we are back to square one as far as headache treatment but that's ok cause I feel so much better not taking this drug. Good Luck to everyone...

An update on my Topamax story, I called Dr. at the Mayo this morning, and received call back from his nurse not too long after. Come to find out that I have what they call in the medical profession a "Topamax Horror Story", that is the same words that my nursed said. So Sunday morning, we leave on a 9 hour trip back to the Mayo Clinic for more tests. Does this drug have some good things about it? Well I am sure that pharmaceutical company that made millions off of it think so, although I personally do not think so. Call me negative, call me whatever you like although one can not call me crazy. I have never met a person that has ever lived with "demons" in their head although they are just that "demons" and I feel sorry for them, and my heart goes out to them, and I come to wonder if any of them were ever on "Topamax" the "Wonder" drug. It is a wonder all right, it is a flipping wonder it is still on the market.

Hi Pattie.
I was on Topamax for about a year. I built up to 300 mg daily, and it suppressed my appetite so that I didn't want to eat or forgot to eat. I lost a little bit of weight, but not much, which is surprising. Maybe it was because it made me too tired to exercise? My daily headaches went away and I rarely had a migraine. BUT--I was so mentally confused I couldn't remember my phone number, social security number, etc. I would do a task and then completely forget that I had done it. I started chewing people out on the phone for not doing something that they had indeed done, but I'd forgotten about it. When I started making a fool of myself, I decided I'd had enough of the Topamax. I gradually got off of it, and have been Topamax-free for several months now. Unfortunately, even though my memory and mental confusion has improved a little bit, it is not back to normal by a long shot. I'm left wondering if my memory and cognitive reasoning ability will ever get back to normal. I have to write myself notes and I still forget sometimes, anyway! It's very frustrating. Furthermore, I've developed a "mole" on the back of one of my eyes. Considering the blurred vision I also suffered from thanks to Topamax, I also wonder if the mole on my eye is from the drug, too. My neurologist has now suggested I take Gabitril instead of the Topamax for my migraines, but after looking up its side effects, NO WAY will I try that drug, either. It also has a side effect of mental confusion. What gets me is my neuro told me the mental confusion and memory loss would go away as soon as I quit taking the Topamax. He said it had NO LONG TERM EFFECTS. Well, I'm STILL WAITING to get back to normal here. I'd still rather suffer from my daily headaches and occasional migraines than to have no memory. Just call me Dorrie, like the blue fish in Finding Nemo who had no memory!!

My name is Jack , I have had epilepsy for about twenty eight years now and have been on Dilantin the total time. About ten years ago I started having complex abscence siezures so my neurologist started me on Depakote also. Until recently I was taking two thousand miligrams a day and , for the last ten years, wondering why I was gaing and not being able to loose weight. Recently, after having spent literally thousands on diets and pills and whatever I came to find out that it has been the Depakote all along! Well, needless to say, I changed nuerologists(since my original one never discussed the side effects of depakote with me), and now the one I am seeing is "weaning" me off of Depakote and starting me on to Topamax. He did explain the side effects and that I probably will loose too much weight, and will have to be taken off of it eventually. So far I am up to 100 milligrams per day and the only side effect is that soft drinks taste flat and the appetite seems to be waining somewhat. I have heard about the kidney stone problems so I have started to drink a lot more water. I have noticed that most of the people that seem to have the really bad side effects are those who are taking this medication for migrain headaches, and bi-polar disorders. Maybe I am just imagining things.

my 15 year old daughter took topamax for migraines. After only a few doses she was short of breath and very disoriented we stopped imediatly. It took 2 weeks to feel somewhat normal. 2 months later she still has times when she feels disoriented and unable to concetrate especialy during a migraine. has any one else had lasting side effect after stopping the meds.

I just read your story. I too think that I am living a night-mare because of this drug. I originally had petite-mal seizures but a recent MRI showed three lesions on my brain.The Dr's are now try to rule out MS. I have been doing research on this medicine. and the rarer side effects are upper motor neuron lesions along with so other funky side effects. My neurologistwent so far as to tell me I didn't know what I was reading when I told him I read the clinical report. That's when I informed him that I had a degree in Science.