I have now been on 37.5mg of topamax for 10 days.
I am so much more dizzy. I have had an ongoing headache since I increased my dose and the dizziness isn’t fading! I actually feel much more motion senstive and like I am veering when I walk than I ever did off Topamax, day to day. I actaully wish I feel like I used to day to day. Except I want to prevent the attacks I get at the time of my period!
To make things worse, my period ended a week ago and last night I got spotting . I have never had that before. I looked it up and it seems Topamax can cause that too.
I’m wondering if I should just stop it. Should the increased dizziness have gone by now? The pharmacist said the headaches are actually quire common but the increased dizziness in making me really anxious. I feel like it should have passed by now if it was going to.
So, this is a bit of an SOS. Any feedback from Topa users would be fantastic. I kind of fee like I am at breaking point. To make it worse, the neuro is in another state and communication is so difficult!
Thanks guys. x
It’s awful when you are struggling so hard to get onto the Topamax & so disappointing to find the side-effects worsen everything. I’m sure you’ll get some help here to get you over this hump. Just a thought - you say you are so much dizzier since being on 37.5mg Topamax. How long were you on 25mg and how was the dizziness on that dose? Maybe your brain hadn’t adjusted totally to the 25mg. The increased dizziness is naturally making you extra anxious and that in turn can increase the dizzies.
My fellow topamax friend . I went off of it on Saturday and I do feel so much better, BUT I’ve only gone back to baseline dizziness so I won’t see the possible relief of my symptoms that I couldve had I stayed on it. I’ve heard so many sucess stories with the drug so hang in there if you can. It just wasn’t for me at this time (my anxiety was too high on it and coupled with the increase in symptoms I was not in a good mental state. After being off it I’m still depressed/anxious but not like I was on it. I just needed a break physically and mentally, but right now I just couldn’t push through, maybe in the future). Hang in there if you can, so many of the sucess stories are about people who did and had sucess!
Thank you girls. Barb, I think I was on 25mg for about 3 weeks? However, I was much the same on that dose too…just without the headache! It’s like I don’t want to go back to 25mg now though as I can’t stand the thought of going back up again to 37mg. You can’t win. Dr Granot said to stop if I feel really bad, but it’s that feeling of failure and fear that there wont be anything else out there to help me that’s stopping me. I feel likeTopamax is the only drug that can work for some reason! I am kind of limited as I already take ciprimil and I have tried to get off it before and the withdrawl effects were terrible. So…the ami and nori etc are a no go.
I have already tried pitz, so I feel like there are not many successful meds left. Hope I am wrong.
Barb, how are you feeling on the 37mg? Is your virus and breathing better?
Ellen, I am so glad to hear you are feeling a little better now. Don’t worry about the fact that you had to stop. As you said, now just wasn’t right for you. Another time might be. I hope you can get some time to relax and bring your anxiety levels back down as that will no doubt bring the dizzies back down also. Sometimes that’s half the battle! Are you going to try another med?
AG & Ellen
Please don’t feel you have failed if you can’t ‘hack’ the Topamax. We know you are doing your best to give it a good try and there ARE still other med options for so it’s not ‘Topa or Nothing’. Often we have to try different meds before eventually finding one that does help so don’t get too despondent if it’s time to move on. We all react differently. Now I’ve got the Ventolin my breathing is a lot better thanks!
Topamax isn’t working out for you. So, go with something else. I couldn’t stay on Nortryptaline (sp?) for more than 4 days!!! On the 4th day I felt like I was going to pass out every 15 minutes!!! I guess it affected my BP or my vagal nerve impulse, but there is NO WAY I can hack that med–and it is the another “miracle” drug when it comes to migraine prevention. It seems that when I hear people talk about migraine treatment the first things they say are “Topamax” or “Nori”
So, if one doesn’t work with your chemistry–you have to move on to something else. Sorry it wasn’t your magic bullet though. That is the frustrating thing.
Have you asked your doctor what he thinks you should do. I am not sure what a fair trial for Topamax is…My neuro suggested the side effects which would make you quit would be mood or memory changes or speech problems. I hope things start to turn around soon and it starts helping you! x