Question for those on topamax

For those here on topamax- I know it is normal for it to make symptoms worse at first- and for it to take months to start helping- but I was wondering for u all, how long did it take for the topamax to stop making you feel worse than normal and for you to get to your baseline?

Honestly–I don’t know whether it was the Topamax or just the migraine symptoms being on edge but I felt like poop for a full six months. But I started to notice–at about 37.5mg that there were days when I actually felt ok. I really didn’t accept that much at the time because it was surrounded by yuck. Then, by 50 mg I would have four or five days strung together and I really started to realize that there was a difference. That’s when I got brave and started to really increase my doses faster to get to 100mg. I was loopy and goofy for a long time but once that settled out I felt more better than worse.

When I’m tired i still feel really not good. But I have more good days then I did and that’s worth a lot!!

u felt worse for 6 months??? why did you end up staying on it??? what other meds have u tried?

I felt worse in the sense that I had a harder time remembering things and names and words. I felt dumb as a dog but as far as VM I can’t say I felt worse and nori made me pass out. I was already on metoprolol for my fainting issue(a whole diff thing) so obviously beta blockers weren’t the answer so…I was hoping topamax would be the answer and I had been assured that the stupids would calm down over time. They have and I am nearly 90% so I’m glad I stuck it through.

I had very much the same experience as dolf. It took me the full six months to get up to 100mg Topamax and another
2 months after that to be able to say: “WOW - I’M FEELING SO MUCH BETTER”!!
After two and a half years of feeling so ill, living through daily horrendous migraine headaches, visual vertigo making even a short car journey hell and using a ‘walker’ to get around the house and spending months trialling other medications I was
prepared to do whatever to took to give Topamax the best trial I could if this was a mediation that could give me my life back!

I actually used dolfnvr’s experience as my guide. She was ahead of me and I thought if she can do it and get through the ‘grotty’ days then I can and will. So, yes, in the early days of starting Topamax I had the headaches, dizziness, nausea, exhaustion, foggy brain, etc. and in between a few days of ‘clear headedness’ that spurred me on to keep going. Then when I got up to 75mg I began to see that this med was actually doing something for me and I began to increase just a bit quicker.

So six months might seem like a long time for a med to work and maybe some people can tolerate a faster titration. Others have tried that and not been able to cope - we are all different. I was desperate!! My life was slipping by. I had trialled so many meds. I had been scared to try Topamax knowing that it was a powerful drug. Thank goodness I did.

I have to say that I had felt so bad for so long BEFORE going on the Topamax that I had very little direction to go but UP. I wasn’t as bad off as some who post here–I was still working. But that’s ALL I was doing. I would go to work, go home, go to bed, and start over. And while I was at work, I’d often just hide in a corner with my eyes shut for 10 minutes at a time just shutting the world out. I felt horrid. And when it would get “acute” I would be stomach turning flu-like, in bed SICK–but because I don’t get headaches I had NO IDEA IT WAS MIGRAINE!!! I got the flashing lights, the dizziness, the vertigo, the imbalance, the weird sensations and generally thought I was losing my mind, but barely a tension headache. Adding the Topamax just made me forget words and have a hard time concentrating, which was frustrating and scary at first, but then someone on this site–some wonderful poster who I cannot pin point now, promised me that after a couple of months the fogginess and lost words would get better. That was my greatest fear and the reason I ALMOST QUIT. Once I got that reply I gave it one final push through. And I am so glad I did.

Like I said, when I am tired, I still lose words. And I do have a harder time stringing together verbal “off the cuff” statements at times. But in general I feel so much better–am able to interact with the world and my life with normalcy and am generally at 90% on a day to day basis with some days being near 100%!!! When I’ve had a cold or had really nasty weather fly through I’ve gone down to 60% or so, but I’m not spending days and weeks completely CRASHED like I was. In the end those six months are a distant memory, and they took so long because I titrated so s l o w l y. Perhaps someone who titrates faster would have less time of issues, but then, they’d likely be more enhanced–6 of one half dozen of the other.


yea sorry i want to clarify- my question is if topamax made your MAV worse, how long did it get worse before you at least got back to your baseline? i am not referring to the other side effects like thinking problems- i just want to know how long i should put up with increased balance problems and dizziness before giving up on this drug. I have been on 25 mg for about 3 weeks now and it is making my balance worse which i really cant tolerate and the dizziness a tiny bit worse (which is ok with me). my balance is so bad that i just got a walker too so i cant afford to lose any more but at the same time i dont want to give up too soon as this drug is one of my last chances here.

dolf- you say you are at about 90% and when u get sick u are about 60%- before you were on the topamax, what % would you say you were at? are your bad days now better than they were before being on the drug? i have to say if my worst day was 60% i would be thrilled- i am at about 10-20% these days- with the odd 30% day here and there.

also what time of day do you both take your topamax? thanks again for both of your replies!!!

When I was at my worst there were weeks when by Wednesday I would have to nap during my lunch and would put my head down for 10 min snoopers twice in the afternoon then would go home and go straight to bed by five thirty. I’d have to do the same Thursday and Friday to make it through the days. Saturday would require a three hour nap. Then Monday I might be ok for one day. But I would be so off balance all day that I’d be exhausted again by Tuesday. At least twice a month I’d have to stay home sick as a dog…what I now know is my full on migraine reaction. I don’t get the headache but I get terribly sick and flu like.

90% means I barely notice anything but may get woozy in a super patterned bathroom or long car ride or if the lights are flickers. 60% means I feel a bit off kilter with maybe a tummy turn here or there but I’m not forced to stop what I’m doing. Oh yeah I also get this weird one pupil bigger than the other when my migraine kicks up at 90 it never shows at 60 I can see it and start to add extra sleep to my schedule.

Not sure anyone can answer your question about a baseline. If yours is one where you can walk around unaided and have a halfway reasonable life then I can understand why you would be concerned that Topamax could be making things worse instead of better. I don’t remember ever having a baseline or walking around unaided before trying Topamax.
The best thing would be to phone your neurologist and ask his advice. Topamax is a very strong med and has to be to alter some of the neuro pathways in the brain that have been knocked out of kilter (my wording!). This doesn’t happen overnight and the MAV brain doesn’t like change which is why we go up ever so slowly on this med at very low doses to give our brains time to adjust. It’s not an easy journey, as we have been honest to say but so worth it when successful.
It’s definitely not an easy decision to make whether to ditch it or carry on - sometimes it’s just too hard to cope with the side effects.

Have you asked your physician about using Valium as a bridge until the Topamax steps up? In my early days on Topamax, I was still having vertigo and had to supplement with 5 mg Valium every four to six hours to get through the day. When the Valium reached a threshold in my system (usually 2-3 days at this dose), I could take 5 mg every 6 to 8 hours and get around. I still had some vertigo but it did not impair me to the point that I could not work or walk unassisted. I have used a cane and walker before but that was prior to anyone figuring out what was going on with the symptoms. Valium was my lifesaver until I could taper it and just go with the Topamax. I still keep a bottle of Valium on hand for breakthrough times. The Valium never made me sleepy or tired and I never was addicted to it, so I guess it knew where to go in my brain to calm the vestibular system.

thanks for the reply domino. so for you, did topamax make your dizziness or balance worse when you first started it? if it did, how long until you got back to your baseline/your body got used to it?

How long have you been on it and what dose are you on? What % do you feel? How is your balance now?

Valium does nothing for me. Xanax when taken at bedtime used to help my symptoms the next day but now it doesnt work- nothing does.