I have been on 100 mg of topamax twice a day now for over three y...

I am 47 and in the same boat. The Doctors blamed my hair loss on thyriod. I too am now experiencing body or joint aches. Also some shortness of breathe. Been on topamax about three years. The migraines were terrible. I take frove when a headacke comes on and a imatrex shot I give myself if needed. Now my son age 12 has started having migraines. I didn't have them that young. Any suggestions. I guess I am going to try to find something else, before I am bald, hurting all over, depressed. ect. But my head didn't hurt all the time.

I have been on topamax for migraines about 5 months -- started at 25 mg daily and slowly increased to 75 mg daily by January, when I started having significant joint pains, especially in my neck, upper back and shoulders, as well as hair loss and symptoms of depression. I have been weaning myself off the topamax and have had improvement in all the side effects, though I still have significant back and neck pain.

I've been on Topamax for a while now, started out at 50mg & in June started 100mg twice a day & my hands have been killing me for a while now, always feel like I am spraining & pulling them & I'm not doing anything, they ache so bad, I can't even wash a dish half the time, does NOT feel normal. I've
also experienced numbness (a couple severe episodes that lasted a few hours before the feeling coming totally back again) & I still deal with it on & off & this happens with my hands mostly but also my legs & feet. My hands mostly ache but also travels up my arms & also happens in my knees & my legs & feet also.
I have epilepsy, since 2003 & have been on so many medications but been having a really hard time finding one to help me & every time I seem to find one that does seem to help me the side effects are so bad that there is no way I can stay on it & it almost looks like the Topamax might be the same way... I'm in my early 30's..

I am also experiencing the same. My hips and back are hurting so badly I've been missing a lot of work. I'm also just exhausted. I'm about to cut my hair short because of the hair loss. The hip pain is the worst though. I come home after working and just limp around, some days in tears. I take 250 mg a day for seizures. I've been taking it for nearly 3 years. I may just have to stop taking it. It seems to have stopped the seizures, but I just figure there must be a better medication for me out there than feeling like this. I am forgetful, my speech is insane. My sleep is interrupted all the time by bad dreams. My menstrual cycle is almost constant. Any weight I lost in the beginning has since been gained back.

I have been on Topamax for a week and already have spent hours looking up side effects on the computer because of how horrible I feel just in the short time I have been taking it. The only side effect my Dr. told me about was there might be slight tingling in my hands that will go away in a couple of weeks, other then that it will help you lose weight and act as a mood stabilizer for my bipolar disorder. Well I can no longer drink anything carbonated due to the medicine the combination burns my mouth..which is somewhat common from what I have read..and I have body aches so bad that I can barely move and am living on ibuprofen daily...I am extremely tired all the time. But hey good news my moods are not as frantic and I don't have tingling in my hands at all lol hmmm is it worth it? I guess time will tell with the next three increases.

I'm on 100 mg of topamax once a day I had similar symptoms and my doctor stated most patients with the issues or with tingling or numbness in hands and/or feet etc... is due to potassium issues. He added a potassium supplement to my dietary intake and within a few weeks the issues I was having with arthritic pain went away. Maybe ask your doctors about the links between potassium deficiency and topamax or even do a google search to see what you can find, it helped me. good luck. Also for the person with shortness of breath do you take any anti-depressants or anti-anxiety meds? I had been taking wellbutrin for 6 months with no issues then started to feel like I was having heart attack, shortness of breath, burning, tightening in my chest, I had an echo cardio gram and a lot of blood work done all was fine, I couldn't carry on a conversation of climb stairs at home without being short of breath, i'm only 40, 2 days off the wellbutrin and I felt 50% better, a week off and I'm loving life again.

I am 49 years old and having similiar problems. In fact, they want me to have hand surgery for carpal tunnel syndrome next week. My hands wered perfect until 7 days after I started topamax. Do you have any update you would like to share?

Thanks so much.