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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 4 of 4. This is the beginning of the thread.
Posted by phrightener on October 25, 2004, at 14:22:14
Thank you so much for taking the time to read this post! If you have had an aweful experience with this drug or are a current user please add whatever info you possibly can! My fiance's life might depend on it!
She was first given Topamax about a month ago as it was prescribed by her sleep disorder doctor to treat RLS (restless leg syndrome). She lost some weight and at the end of the month started getting a tingly feeling in her hand.
After this time she stopped for about a day and then began to take it again (25mg). The next day she began to get tremors/convulsions in her arm during the day. Her doctor, thinking it was RLS creeping into the daytime, upped it to 50mg and then the next day to 50mg to take during the day as well as night.
The problems got WORSE and we dont know if it was the Topamax causing this.
She started to get convulsions that took over her right half of her body that after a day or two continued up into her head where she then would get choking fits. If you saw this you would have thought she was having a seizure of some sort.
Then came the round of emergency room hospital visits. AFter 3 hospitals, a slew of neurologists, 8 doctors, an MRI, an EEG, and two Cat Scans, NO ONE had a clue what was wrong with her.
They told her it was stress because all the tests (even bloodwork) came up NEGATIVE.
Her symptoms are body convulsions (seizure like)that will occur every 15 minutes for about 3-20 seconds a time, forgetfullness, speak slurring, lack of concentration. Her choking was so bad that she could not eat for 3 days straight because the choking fits could come at anytime. When she sleeps, she has NO CONVULSIONS or anything! This only happens when she is awake!
The doctors have since taken her off the medication and we hope that as it gets out of her system she will get better!
If you know of anything about this PLEASE RESPOND with whatever info you have! I thank you all in advance!
Posted by dazed on October 25, 2004, at 14:37:23
In reply to TOPAMAX users past and present! HELP!, posted by phrightener on October 25, 2004, at 14:22:14
I was on topamax for several months. 25 mg for a week, add 25mg each week. You are to titrate up slowly, some 25 mg each week or every two weeks as one can handle. Tingling in hands and feet is VERY common. Slurred speech is common, inability to think straight, etc. I got the "stupids". People refer to it as "dopomax". If you titrate up slowly, the side effects are less noticable and many can handle them. I was fine until I hit 100 mg, then the stupids got to me.
I never had convulsions, but then I am not easily affected by medications as some are. Some cannot handle Topamax at all. I'm glad she's off the drug and it may take a while to get it out of her system. Many cannot take that particular drug at all. I switched to Zonegran and it works much better with less side effects.
I hope for the best and keep us informed please!
Best of luck. I hope I have answered some of your questions. If i think of anything else, I will add more.
Posted by phrightener on October 25, 2004, at 15:39:13
In reply to Re: TOPAMAX users past and present! HELP!, posted by dazed on October 25, 2004, at 14:37:23
I just heard from the neurological toxicologist that she believes this is caused by Topamax and that it will slowly get better as it leaves her system! My fiance is starting to slowly gain more control when the "seizures"/convulsions happen and she seems more awake than before! She is also able to start eating REAL FOOD!
I hope this information can help others out there who may be taking it and are having issues! I will let you all know if there is a full recovery or if anything else happens!
Thanks for you help so far!
Posted by stresser on October 26, 2004, at 8:41:44
In reply to Re: TOPAMAX users past and present! HELP! - Update, posted by phrightener on October 25, 2004, at 15:39:13
I have RLS syndrom, and I take klonipin for it. I have never heard of taking topamax for that. My daughter takes it for Binge Eating disorder, I some other people on this board take it for seizure's and bi polar II. Wow, hopefully this is all behind her and she will find something else for the RLS. It can cause you to lose large amounts of sleep, and Klonipin works very well for me. Good luck -L
This is the end of the thread.
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