United Brachial Plexus Network, Inc.

Topomax seemed to help alleviate the severe nerve pain in my hands and arms for a little while, which are the result of several cervical fusions I have had because of degenerative disc and vertebra disorder which have caused spinal chord injury. However, within a brief time (maybe a week), I began to have fevers and elevated pain that didn't respond to the strongest pain meds. I had nightmares, too. I have a form of Lupus(Mixed Interconnective Tissue Disease), and had severe flare-ups with angry, huge rashes on my cheeks, sores in my mouth and nose, headaches, and symptoms of the flu. I stopped taking Topomax for a few days, and called my doctor, who said he never heard of such a reaction, so I started it again, and the Topomax made the flare-up, feverishness, and pain even more severe. I was in a fetal position on my bed, moaning in pain. I WILL NEVER TAKE TOPOMAX AGAIN.

I was reading this board and wanted to tell everyone that topamax is an evil drug. I have had a bizzare stomach disease that has gone undiagnosed for 2 years. So my doctor decided that maybe i should try topamax to see if my vomiting was caused by a spastic diaphragm. Bad idea to say the least. 2 nights ago I went into a psychotic episode which was like being on mushrooms . My vision was completly distorted, i saw things that were not there, then i started having violent seizures ( about 4 during a 5 hour span). I am frightened because i am very ill as it is and this episode has not been easy to recover from. I wouldn't wish this misery on my worst enemy.

I am 42. I started haveing severe headaches about 2 1/2-3 yrs ago after a bad sinus infection. Neuro says I have Intercranial hypertension. My CSF gets up to 250. I was going in for Lumbar punctures, and decided to heck with that, it wasn't helping any, just making matters worse. I am taking Topamax to the tune of 250 mg a day. I was taking 300mg but walking around like a weeping T-Rex. Biting everyones head off then crying about it afterwards. The Neuro didn't warn me that Tope causes mental disorders..gee thanks doc. He didn't warn me about alot of the possible side effects.. He told me *afterwards, when I called him in tears and in a major funk* to lower my dose back to half, but when I do that I started to have blinding headaches and dizzy spells again, I didn't know if it was due to dependancy on the drug or what. Had to go back up 250, but now I am forgetful, gums bleed, hair falls out...depressed. I don't know if it is part of the sickness or the drug. I talked to my regular Dr and was told get over it Karen, you are fat, until you lose your weight, you are going to have IH. Well if thats the case there would be a heck of alot of people beside myself out there running around with Intercranial hypertension..because I ain't the only fat person in the world... I had to fight my insurance provider to get me another primary care DR. But I have lost 70 pds, walk 3 miles a day (in less then 45 mns) *G* so they can stick it. Going to another neuro for second opinion, my advice? stay away from Topamax. and for you people who are going to use it as weight loss? Get a tape worm...at least you can get it removed afterwords

I am 42. I started having severe headaches about 2 1/2-3 yrs ago after a bad sinus infection. Neuro says I have Intercranial hypertension. My CSF gets up to 250. I can't go up into high altitudes, etc. as my brain will end up like those little guys on "Mars Attacks." I was going in for Lumbar punctures, and decided to heck with that, it wasn't helping any, just making matters worse. (sore back AND headaches!!)I am currently taking Topamax to the tune of 250 mg a day. I was taking 300mg but walking around like a weeping T-Rex. Biting everyones head off then crying about it afterwards. The Neuro didn't warn me that Tope causes mental disorders..gee thanks doc. He didn't warn me about alot of the possible side effects.. He told me *afterwards, when I called him in tears and in a major funk* to lower my dose back to half, but when I do that I started to have blinding headaches and dizzy spells again, I didn't know if it was due to dependancy on the drug or what. Had to go back up 250, but now I am forgetful, gums bleed, hair falls out, asthma that I hadn't had since childhood came back and yeah...depressed. I don't know if it is part of the sickness or the drug. I talked to my regular Dr and was told get over it Karen, you are fat, until you lose your weight, you are going to have IH, and asthma. Well if thats the case there would be a heck of alot of people beside myself out there running around with Intercranial hypertension..because I ain't the only fat person in the world..(and asthma). I had to fight my insurance provider to get me another primary care DR. (starts as of this month)But I have lost 70 pds, walk 3 miles a day (in less then 45 mns) *G* so they can stick it. (I started out at 256 pds, 11/03 you do the math..) Going to another neuro for second opinion, my advice? stay away from Topamax., unless you get ALL the facts!! and for you people who are going to use it as weight loss? Get a tape worm...at least you can get it removed afterwords (in the mean time I am Sucking down asprin darvicet and tylenol like I used to suck down M&M's...) TRUTH:I will literally forget my name. I have to wear a medical alert bracelet, just in case, It stinks. and It is scary.I am lucky to have the support of a very loving family. I don't know it it is the medicine, or the disease, but it has gotten worse since I have started taking the medicine..hmmm?

I have been taking topamax for over a year at 200 mg. I have had the tingling in the hands and feet and some of the hair loss. I have also had the weight loss and it has been over 90 pounds, I have kept it off and have never gained any back. It is as if my body got to where it needed to really be and stayed there. I originally started taking it because of a diagnosis of bipolar disorder but it also helped with an occasional migrane. As for the blood test results, I am going in for a physical soon because something funky came up when I went to donate platelets the other day, they rejected me and said a lot of my counts were screwed up pretty much. As far as the cognitive thinking goes, this will go away with time, I a m a grad student and have kept my gpa pretty high. I have no suggestions as for the numbness, if I stand on my feet too long they let me know about it but if I walk the numbness goes away fairly easily. The hands have always bewildered me because nothing helps them. I have no bad tastes, no stomach problems. Good luck to everybody.

I replied earlier under *null.* LOL
When I started having this disease in my noggin, I had a 3.38 GPA. I just recieved my AA with a scraping by of a 2.25 I really had to study hard for that. I have to read a sentance over and over for it to penetrate. I have to take notes of my notes, and I have to record the professors, because I may fall asleep in class. I can't use the computer for a long period of time because of my eyes sensitivity to light causes headaches. The parathesia gets so bad that I can't even feel my face and hands. But Dr's don't know if it is due to the tope or mixture of the tope and the IH. I sometimes feel like I have went swimming in a vat of oragel. It effects everyone differently so it seems, but since I am one of the supposedly less then 8% of the people, my neuro said it isn't the topamax. But reading this forum and so many others out there it sounds like there are alot more then just ME having problems with this med...*LOL* thanks for sharing people...

I Know what you mean I did the same thing smooked some weed, but I didn't think it was going to do any harm, boy was I wrong. The tingles in my arms and legs felt more like knives stabbing me. I couldn't fall asleep at all that night and the next day was hell. I realy don't think TOPAMAX is for me, I'm going to talk to my Dr. because I have only been on Topamax for a month and the side affects are not wroth it

Ok well as much as I would love to sit here and read 19 pages of replys my body just won't allow me to do that so heres the big question for you all. How long in general will this side effect of this tingling of feet face and hands last. Did any of you lash out at people? If I remember correctly I asked my husband for a divorce this weekend. Does this sound normal to anyone? I am on 25 mg 3x day of topamax which by the way I have been on before 25 mg 1x a day with no side affects at all so why all of a sudden have I become irrational? I feel like I am going crazy out of my mind. Thanks for your help. Mo

Ok well as much as I would love to sit here and read 19 pages of replys my body just won't allow me to do that so heres the big question for you all. How long in general will this side effect of this tingling of feet face and hands last. Did any of you lash out at people? If I remember correctly I asked my husband for a divorce this weekend. Does this sound normal to anyone? I am on 25 mg 3x day of topamax which by the way I have been on before 25 mg 1x a day with no side affects at all so why all of a sudden have I become irrational? I feel like I am going crazy out of my mind. Thanks for your help. Mo

I had the tingling in extremities, but it passed. Now I just have major mental problems, which are hard to gauge because I can't remember what I am forgetting to do. I know I am extremely distractable, and then forget what I was originally doing, and then get distracted again, and nothing gets done. I have just come up to 100mg twice a day, and hope the effects reduce as I get used to them. I really hope the people who are having major problems take time to take care of themselves. Don't let your doctor prescribe your meds- you should select them. Topomax is one of the big guns I think, at least for epilepsy which is what I take it for. I see a neurologist whose specialty is epilepsy. See an expert. Also take walks, exercise, eat well, give yourself time. Life is hard with a chronic disease and all you get out of life is the living. Bernie Siegal's books provide some good insight into healing well. Meanwhile, here's to better living through chemistry!