| Posted at 1:37 PM on Jul 09, 2007 by biogoddess, #22221 |
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.
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.
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.
This registry is a place to share positive or negative side effects of using Topamax. If you directly experienced a side effect while using Topamax, then we encourage you to enter it here. Please note that entries here are the experiences of individual users, and in no way means that you or anyone else will experience the same side effect, since the same medication affects people in different ways. Please always contact your physician.
-- Please see our disclaimer
medication imitrex neuroscience research carbonated beverages absolutely nothing nasal spray fingertip bane molecular biology migraines migraine fatigue genetics one person dramatically medications advocate breathing problems extremities topamax concentrate wisdom herpes virus corneal erosion neuro job interviews eye herpes lost my job mmmmm keppra ummmm insomnia eye pain bandaid skin discoloration opthalmologist carda topamax for migraines information gatherer brain activity give it a try headaches regimen inability stable voracious dismayed