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Re: Topomax for lability -- need input!

Posted by SLS on October 20, 2000, at 7:54:34

In reply to Topomax for lability -- need input!, posted by Sharon J. on October 17, 2000, at 22:56:15

Hi Sharon.

I don't know why you haven't received any replies yet, but don't take it personally. Sometimes posts get lost when the board gets crowded. It is also possible that no one who has read your post so far has shared your experience with Topomax or has any input that they can give with confidence.

I am sure that if I were in your position, I would be blaming it on the Topomax too. I don't know whether it is a bad drug for you or if you are someone who responds to much smaller amounts. Whichever it is, there are plenty of other drugs available that act as mood stabilizers to choose from. It is a common story here that someone will have a horrendous experience with a drug that for someone else is a miracle. Just don't dispair.

I have experienced an olfactory side effect with a drug called Lamictal (lamotrigine), another mood stabilizer. It produced a phenomenon called "taste perversion". Nothing tasted right to me. Things that I usually loved to eat I found repulsive. What was really interesting is that I found everything too saltly. Even spring water! This side effect did diminish over time, and Lamictal has turned out to be a good drug for me.

Your experiences are not comparable to mine. They are much more distressing and impeding to functioning. It would not surprise me if it turns out to be that the Topomax is the culprit and that it is not the right drug for you. Like I said, stories of unusual, "not previously observed", reactions to drugs are not uncommon.

I guess you'll find out shortly if Topomax is causing your experiences as the drug leaves your system. Perhaps it will turn out that your physicians are correct, and that you will have to search for another explanation.

Either way, everything will turn out just fine. It is sometimes a difficult and time-consuming process to find the best drugs for any one individual. Hang in there.


- Scott

> Hi. I just discovered this page tonight as I searched the web for some answers to some questions I have, so maybe someone out there has an answer for me. I have been taking Topomax in gradual 25 mg dose increases in one-week to 10-day intervals, aiming toward a therapeutic level of 200 mg (where we would stay for a min. of 6 months) for treatment of lability. I, too, have been losing weight, and in this period of time, have dropped 32 pounds! However, I have a couple of problems that occurred that I want to share that happened to me to see if anyone out there could offer any clues to a mystery. As the dosage of my Topomax was increased, each increase became more and more diffucult to adjust to, and took more and more time before I got to an OK place. (I was feeling dull, lethargic, lack of motivation and kind-of headachey, and these side effects increased intensity and duration at 100mg, 125mg). When I reached the increase from 125 mg to 150 mg, it was just terrible. I felt almost disabled by it, and felt generally sick all over, and was exhausted physcially (but not sleepy), and my head felt wierd. Almost 2 1/2 weeks later, I still had not made the adjustment to 150 mg, and Dr. said to "hang in there". That increase and it's adjustment period seemed endless in comparison to the others, and then a few more days later, something really odd happened: I developed a very sudden onset of hyperosmia (exaggerated and increased sense of smell) coupled with the nastiest case of physical collapse, exhaustion and terrible headache! Within several more days of the hyperosmia onset, I began having panic attacks, GI problems, difficulty staying asleep at night and physical revolt to normal household smells. I vaccillated between severe physical distress from the reaction to "smells" to long periods of being total inert for many, many hours, trying to recover from the extreme physical and emotional manifestations as a result of my hyperosmia! I got really scared and "blamed" Topomax. In the last 10 days, Dr. dropped the dosage of the Topomax (at my insistence) even though he disagreed with me that it caused me to be so sick. Nonetheless, he safely and swiftly reduced the Topomax. It has been 48 hours that I have been Topomax-free, and I am still as sick and miserable as when the hyperosmia started (Oct. 4). I have been to see my physician 3 times since the onset, and he sees "nothing" in my nasal cavities, said I probably have a virus or something, and said he never had a patient present hyperosmia to him before, and admitted he's stumped. I admit I have a really strong aversion to ever taking Topomax again, especially since I am still so sick. I really think this all started as my Topomax dosage increased to 150mg! I need to find out what made me get so sick and caused the hyperosmia. So...anybody out there ever have a wierd reaction to Topomax like this, or can you make 2 + 2 = 4 for me on this one??? Or better yet, any psychopharmacologists or neurologists have any input as to whether there is any remote possibility that Topomax can upset the balance in the brain where the olfactory lobes(?) live? On second thought, how about disputing this scientifically for me so I can get over my intense fear of what Topomax "did" to me altogether? I am grasping for straws. Thanks for any input y'all might have!

 

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