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I have been on topamax for almost a year now. I had been having a...

Posted at 1:37 PM on Jul 09, 2007 by biogoddess, #22221
I have been on topamax for almost a year now. I had been having a nearly constant migraine cycle for three months which had to be broken with migranol nasal spray. I then started on escalating dosages of topamax. By 100mg I realized that life was wonderful but that I couldn't retain much information which was a problem as I had just gone back to school for an advanced degree. Upon consultation with my doctor, we reduced my dosage to 50mg and things improved dramatically. I have experienced some fingertip and toe tingling which have been completely tolerable. I take the medication right before bed so that I don't have problems with fatigue during the day. I do get out of breath easily when I exert myself and carbonated beverages taste horrible. But my migraines are under control. I have a Ph.D. in molecular biology and a few years of neuroscience research under my belt. I would like to say that it is EXTREMELY important for people to understand that no medication is going to work identically for any two people. What works for one person, may not work for everyone. I know people who swear by imitrex but this medication does absolutely nothing for me. You have to be your own advocate when it comes to medications and treatments. Your genetics will also determine how well, if at all, you respond to any medication. For some topamax is a life saver, for others it will be the bane of their existence. This will always be the case for any medication. Be tolerant of others' experiences and understanding of each others' pain and progress will be made.
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Reply over 2 years ago on Aug 02, 2007 by edugirl, #1010

Dear BioGoddess:

Thanks for your wisdom. I have been taking Topamax for a year now. It it reduces, but not eliminates the number of migraines I have at 100mg/day. Anything over 100 mg/day and the side effects are not worth the increase in benefit. It is funny that there seems to be this ledge. Anything over 100 mg./day and I become forgetful, sleepy, unable to concentrate, and some breathing problems. At 100 mg. a day I get a bit of tingling in my extremities on occasion, but that is all and a reduction in the number of days with migraines. I think it is also important to experiment with dosage to find the right dosage for each individual.

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Reply over 2 years ago on Aug 19, 2007 by topamaxbraindamage, #1295

In epileptics, however, your dosage isn't going to be "reduced" to prevent seizures. It's going to be raised which will more than likely (as it did with me) worsen side effects. It rendered me useless to the point that I lost my job/health insurance, couldn't find another job...would literally be in job interviews, would be asked a question adn would look up and go "ummmm, uh...mmmmm" unable to remember what I was asked. It was mortifying. Then I had a neuro who wouldn't help me get off the topamax. Neuro's generally will charge you about 300 for the first visit and then considerably less thereafter. I had no insrance, couldn't afford a neuro. It was ugly. She iddn't seem to care.

Other side effects. Skin discoloration: I have this blotchy mark under my breasts that started shortly after going on the topamax. I also have severe eye pain. i got in credit card debt to see opthalmologist. They treated symptoms. First it was "eye herpes, then recurring corneal erosion, then a myserious virus that mimiced the herpes virus and recurring corneal erosion" but they never determined what it was, only treated symptoms with expensive drops and contact lens bandaid adn the symptoms came back. After much online research I discovered that this is typical of topamax. I had horrible insomnia where i wouldn't sleep for days, would then get really bad heachaches. i would also see trails when i didn't sleep. i spoke to friend who was on topamax and she knew what i was talking about w/ the trails. I can go and on and on about these effects. Overall this was the worst experience i've ever had and the lack of help i received from my doctor is criminal.

Finally just ended up going to live w/ my mother. i needed help. i thought her doctor would hep me but like the free clinic in LA, i needed a neuro. Finally i got my LA doctor (long distance) to call me in a script for Keppra which i'm charging on my credit carda nd i'm in the process of getting help through the peileptic foundation. coming off the max, i have ringing in my ears, joint pain, nightmares.

lot of people out there like me. a lot. google is your friend.

so this drug is a little more complicated than just dosage, i think it can be toxic with certain brain chemistry....remember this works in the temporal lobe, i think that whether or not this drug works is dependent on that part of your brain chemistry and where your primary dysfunction lies.

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Reply over 2 years ago on Sep 26, 2007 by catherinette, #2057

Your posting is very helpful to me; as a voracious information gatherer, taking Topamax for migraines for just over 2 years (125mg/day), I have been dismayed at my inability to recall names and facts, starting as soon as I began the treatment. For the past few months I have been considering reducing the dose; the process of establishing a stable "normal" brain activity on this medication initially took some time and since it works wonderfully, not only for migraines but for other kinds of headaches, I have been loathed to disturb the applecart. I feel encouraged by your comments - you kept the positive and got rid of the negative on a 50mg regimen. I'll give it a try cautiously, starting with 25mg.

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