Topamax again!

Hi Guys

Not been on for a while as have been trying to keep my focus away from this damned illness and get on with things and enjoy the rest of my trip.

Just wanted to get your thoughts on Topamax again. I decided to go the whole hog and have been on the damn stuff at 50mg for exactly 3 months now. I tried to increase the dose by it made me feel awful. Well there is some good news. Over the past few weeks I have had like 4 pretty decent days. Its strange I seem to have 1 better day and then go back to feeling really crappy again. When I do feel better Im not symptom free or anything, just like feel 85% better, which is better than nothing but ideally I would like to be 95%! My general rocking in the morning seems to have decreased a little bit too which is good. I cant really tell whether its the med working or this is just a random coincidence to be honest and MAV is just keeping quiet for a bit.

I was thinking of keeping at Topamax for a little longer to see if it brings any more benefit in month 4. Hell, I{ve got this far so why not eh? Ive also been tryiong to put off taking Effexor! Im just a little skeptical that if it was going to clean this mess up PROPERLY it would have done by now.

Your thoughts are very welcome!



Hey Luke, I say give it another month. You have made it this far. Month 4 was the magical month for Rich so maybe it will be for you too! Good luck and let us know. Ben

Hi Luke!

Good to see you again. I totally understand about not being around here and trying to live life. I’ve been doing that too, or at least also been dealing with other things that have kept me off the board, including yet another unrelated weird health issue. I swear it never ends. Anyway, to answer your question, I would suggest sticking it out if you can tolerate the side effects, and if you can go up on dose, do that too. Topamax is supposed to be the most effective at 100 mg I was told, although it can be helpful at 50-75 mg for some people. I’m at 20 weeks on it now, at 100 mg (hit 100 mg at week eight). I think it is helping me. It’s hard to say because my headaches had stopped before I began the med, but I can tell you that I haven’t had many while on T and the ones I have had were less in intensity. The physician’s assistant that I just saw (my doc is out on maternity leave) does believe it is helping and wants me to stay on it. However, we are going to drop the dose to 75 mg because it has been affecting me cognitively a great deal again (memory loss, word-choice problems). He said I can drop down, see how I feel, and then go back up to 100 mg if I want to, so I will likely try that.

Keep in mind that I am on T really for migraines. I am on Klonopin and Tofranil for the balance issues (although the latter not sure if that is really doing much). Ironically, recently, I have had 3 quick episodes of rocking that I have never experienced before. All happened while using the computer intensely, and I just shook it off. Very odd though.

But if you ask me if I think the Topamax is helping me in some form, I’d have to say yes overall. I should note, however, that I too have good and bad days while on it, so that should not be surprising to you. No med is a “super cure.”

Hope this helped. Cheers, Bonnie

PS - Hi Ben!! Hope you are well.

absolutely stick it out!! This is how I started getting better to, with the ocassional “better day”, and then feeling crappy again. But then, I had MORE better days, and then more, and then more, and then the symptoms were less, and before I knew it, MAV was just gone, and all at 50mg!! Give it that 4 months. And in my opinion, it continues to work and bring benefit well beyond. I have been on topamax for more than a year now, and it is giving me FAR more benefit now at 1 year than when I first hit the 4 month mark, even though that was the magic number. Just something to consider