I finally got over my fear (it took a year) and I filled my script for Topamax. I started at a very small dose and went up really slowly. I am currently on 50 mg and slowly going upward to 100 mg. So far the side effects I have experienced have been tingling and maybe an increase in anxiety but that seems to have settled down. I haven’t really noticed any benefits yet in relation to stopping my headaches or helping with my dizziness.
For those of you on Topamax what dose are you on and what has it helped you with? Also how much would you say it has helped?
Hi Dizzyloopy,
Glad to hear you finally took a step to getting better and that you are tolerating it so well. I found topamax extremely easy to tolerate and did get up to 175 mg at one point. It decreased my appetite a little bit and I lost just a few pounds. Unfortunately it did not help my symptoms but there are others I am sure who got relief from it and will be chiming in soon. I stayed on it way too long and kept pushing up the dose because I wanted it to work so desperately. I am currently tapering off of it.
I wish you the best with this med and please keep us posted!
Lisa
For those of you on Topamax what dose are you on and what has it helped you with? Also how much would you say it has helped?
Thanks for any input
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Hi dizzyloopy,
I’ve been on Topamax since 19th Oct 2010, so over 6 1/2 months, BUT I’ve only been at 50mg for just over 3 months now. If you had asked me the same question 10 days ago I’d have said, “no, it hasn’t yet helped”, but in the last week or so, I think I’ve started to see little signs that things might be starting to change. It’s still quite subtle, but overall, I would say that I’m less troubled by the 24/7 dizziness, and I believe that the intensity of it has been taken down a notch or two. It’s starting to show up in little ways - I’m engaing more in playing with my children (I have two boys aged 7 and 4), my anxiety seems to be lessened and I’m not worrying so much about it anymore. Also, the little, more ‘intense’ attacks that used to make me feel like a vertigo-spin was imminent, seem to have gone. I was holding onto the hope that after 3 months at 50mg, things might start to happen, so fingers crossed. My plan always was to stay at 50mg for at least 4 months, to give 50mg a chance at working, before going any higher. I’ve currently got fingers, toes, and anything else that will cross, crossed!
Simply put, yes, it has definitely helped me. I am on 75 mg, after titrating slowly up to 100 mg over a span of weeks (going from 15 mg each week). I could not handle the side effects at 100 mg (mostly cognitive), so went down to 75. Been on it for a year or so now I believe. I can say that it has helped me very much with the migraine and related issues overall. I would note that I did NOT see instant help with this med - it probably took about 3 months of being on the correct dose, which is common - but then I did see results. I also take klonopin. The combination probably also help with my balance issues. I say probably because I know the klonopin does help with that; I don’t know how much the topamax helps with that because I was taking the klonopin first but needed a second med - for the migraine, and then the balance secondary. I do have to contend with some side effects of Topamax. Most are minimal, but I do still have some cognitive issues that affect me which I do not like, BUT I will take that over the MAV as a whole that I was suffering with, because the Topamax/klonopin combo has really helped me. So in my case, it has worked and I would say it is one med that can be beneficial to people if they give it a proper trial.
It took me many many months to notice any improvement on Topamax and I am currently 95% symptom-free on it at 50mg for a few years now. I dont make it back to the board nearly enough now because I am doing so well but I remember a time when I desperately needed the help and support, so I dont like to forget those who are in the position I was. I was really really sick. I was just about bed-ridden for a short time, and then very limited in what i could do after that. My symptoms were almost entirely visual, along with the dizzies on top of that so I was a complete and total mess. 50mg of Topamax after about 4 months started to work. After 1 year the topamax I started to have many good days instead of an endless cycle of bad days. Now, Its strange to me to have symptoms beyond just a visual “glitch” here or there. I hope that helps
Thank you everyone for your replies. Rich thanks for coming back to the board with your encourging story. It means a lot to those of us still battling this business. Can I ask did you suffer with issues of anxiety? Sometimes one wonders if it’s MAV or an anxiety disorder causing all this mess. I wonder if anxiety can cause an almost permanent feeling of being lighttheaded, dizzy and a drunk-like feeling?
I was wondering whether you’d be back to post again! Just wanted to thank you ‘in person’ (well, virtual person, anyway )!
Your story above all others is the one I’ve clung to, to get me through all this, since I started on the Topamax 6 1/2 months ago. I’ve only been at 50mg for 3 months, and the main reason I’m still seeing it through is your story of success. LIke you, I’ve had a hard time with the side effects, and without reading your story I would have, quite frankly, given up on the drug months ago! Last time I met with my neuro, I told him about your story, and that that was why I was determined to go at least 4 months at 50mg. There are tentative signs that things may be happening after 3 months or so at 50mg, but in all honesty, without people like you sticking around to post about your success, I would not have seen this drug trial through - thank you, thank you!!
Hey Rich, Are you still feeling better (light sensitivity, other MAV symptoms, such as disequilibrium, diminished, etc) on 50mg of Topomax? I’d love to hear how you’re getting on. I just started 50mg of Topomax based on the advice of my neurologist. Will hope for good results over the course of a few months if I take it at the same time every night?
