United Brachial Plexus Network, Inc.

I have been taking Topamax for migranes. It has helped significantly. I have had headaches but they are more "background"...don't have that nausated sick feeling that I usually get. But, I found myself forgetting things that I do on a daily basis (at 75 mg), backed down to 50. If I felt a headache coming on, I would take 75 mg that day. My dr. wanted me to get to 100 but I didn't think I could deal with the memory problems. One day I realized that my driving was dangerous. Ran right thru a red light across 8 lanes of traffic, knew I was doing it, didn't look to see if it was clear, didn't seem to care and after it was over thought "gee, I could have been hurt". I couldn't believe how "unconcerned" I was over what had just happened. Topamax is not a drug for me, its too dangerous and freaky. I don't enjoy the thought of going back to weekly headaches but it sure beats killing a car-ful of people and myself.

Hi could you please let me now more about NUMB extremites. I have felt in my right knee some pain since I went on Topomax some discomfort and than a few weeks ago coming down some stairs I thought I pulled a ligament.

It has been nearly three weeks and my right knee is still a little swollen and I feel discomfort and it seems to be not as strong as before. I also seem to feel my other knee also cracking is this due to Topomax or am I just imagining it.

I just stopped taking Topamax (my doctor prescribed it for weight loss) because I became extremely irritable, forgetful, unable to concentrate and stupid. I was taking 100 mg and felt like I dropped 50 IQ points. I even started to forget the name of co-workers that I've known for years. I am also a big Scrabble fan and my friends who I usually clobber began to ask what was wrong after noticing how dramatically my game dropped off.

Oh my God! My knees were ACHING while I was on Topamax, but I never thought it was the drug! I also had major tingling in my hands and feet.

iv'e been on topomax for 2 months now and i am in extreme pain now. Started with pins and needles that was painful. then my big toe, and knee and hip. Dr at the clinic I went to (i wanted to save time and not go to my reg dr) thought it was gout and prescribed indocin. Now my knees and hips and back and every joint in my body ache. Also not just my joints anymore. My bones are starting to ache. I take topomax for epilepsy. I looked up indocin online because it didnt seem like it was helping me. Guess what....Indocin makes epilepsy worse. Im thinking about stopping the topamax and of course...im not going back to that clinic again.

Hi, I would expect that by now you have taken her off of the topamax as your post was a month ago, but just in case you haven't let me tell you what happened to me. I started on topamax at the beginning of February. Initially I slept a lot but when I finally woke up I would feel much less pain and be quite lively for a few hours until my next dose. No real problems other than sleeping the first week. Then the next week I was to increase the dosing by double. We were told that I would be more sleepy at first but it would eventually wear off and everything would be cool. Not so! Almost immediately I started having horrible nightmares, serious speech problems, an increase in balance problems and head tics. Everything worsened rapidly until by the third day my head tics were occurring every three seconds and I could only speak one word a minute, slowly and sometimes not even the word I intended to say. My movements became very slow as well. It was terrible. When I saw my neurologist he took me off the topamax immediately and said that if this particular symptom set begins it will not go away. They don't know why it happens but in a few cases it does and the only way to make it stop is to stop the drug. After stopping the drug I began having constant and intense dizziness..felt like I was on a roller coaster for almost ten days. The head tics and facial twiching that accompanied it are still around a month after I stopped the drug. I did not have these symptoms prior to taking the drug. If your neurologist is not an Epileptologist then contact your local Epilepsy society (check the internet for one near you) as they have a listing of all Epileptologists in your area. It is important to have a specialist when dealling with the complications of chronic seizures. Your daughters doc should have removed her from the prescription when she deveolped the symptoms. Read your side effects warning sheet for topamax (or look it up at the manufacturers site) as it says specifically that should you develop speech disorders, or difficulty walking then you should stop taking the drug under physicians supervision.
Hope that helps you. I don't know if the effects wear off completely over time as it has just been a month for me. The level of severity is less but there are still remnants of it each day.

AFTER 3 YEARS ON TOPOMAX 200mg FOR DIABETIC NEUROPATHY (WHICH WAS VERY WELL CONTROLLED BY THE DRUG) AND AN 85# WEIGHT LOSS (AN UNEXPECTED BENEFIT)MY WIFE GOT SEVERE MEMORY LOSS (HAS BEEN UNABLE TO WORK AS A MEDICAL LIBRARY DIRECTOR IN OVER FOUR MONTHS), CONFUSION, THE LIBIDO THING, THE ORGASM THING, BALANCE THING, METALIC TASTE THING, IRRITATED (AREN'T YOU?), DEPRESSION AND ANXIETY. SHE HAS NOT TAKEN THE DRUG IN THOSE FOUR MONTHS AND IF ANYTHING ALL OF THIS IS GETTING WORSE. SOMETHING EVERYONE SHOULD KNOW IS THAT HER DIABETES APRN HAD HER GET A GENETIC PROFILE DONE BY GREAT SMOKEY'S LAB IN NORTH CAROLINA AND THE RESULT WAS THAT THE PATHWAY IN HER LIVER THAT METABOLIZES TOPOMAX IS BARELY FUNCTIONAL. ACCORDING TO THE STUDY THIS IS NOT A RESULT OF THE TOPOMAX BUT IS JUST THE WAY SHE CAME. IN LIGHT OF THE POTENCY OF TOPOMAX, FOR GOOD OR EVIL, IT WOULD BE WISE FOR ANYONE PLANNING TO TAKE IT TO GET THE PROFILE DONE (WE PAID ABOUT $400 OUT OF POCKET BECAUSE GENETIC STUFF IS NOT SOMETHING YOU MIGHT CARE TO SHARE WITH THE MEDICAL INSURANCE FOLKS). THIS IS VALUABLE INFO TO HAVE FOR DECIDING AMONG MEDICATIONS FOR ANYTHING. MY WIFE'S IMPAIRED LIVER CHANNEL ALSO PROCESS PREVICID (WHICH SHE WAS ALSO TAKING) AND VALIUM (WHICH SHE KNOW YEARS AGO WOULD KNOCK HER OUT, NOW WE KNOW WHY).

I WILL BE INTERESTED TO KNOW IF STOPPING THE TOPOMAX REVERSES YOUR SIDE-EFFECTS. I WILL KEEP CHECKING THIS SITE TO SEE IF ANYONE ELSE HAS TAKEN TOPOMAX AS LONG AS THREE YEARS, HAD SEVERE SIDE-EFFECTS, AND THEN ACTUALLY RECOVERED FROM THEM.

I HOPE THIS DOESN'T UNNECESSARILY SCARE ANYONE, BUT I WOULD STRONGLY SUGGEST THE GENETIC PROFILE.

I am taking an anti-depressant for my migraines. It makes me gain weight and I still have the headaches. I tried Topomax last November and it gave me insomnia, weight loss (which was the only good thing), I was depressed and nervous. I stopped taking it, but now my headaches are back to being everyday. I want to take a lower dose of topamax and see if that works. What time of day do you take it? I was taking it at night, but thought about changing the time of day I took it.

I also was taking Topamax for migraines. I had insomnia, nauseau, jitters and weight loss (which I agree was great). I stopped it but now my headaches are just as bad as ever. I want to know if the symptoms go away, should I lessen the dosage or take it at a different time of day.

is anyone on for topamax side effects tonight