New Daily Persistent Headache Support Group

I tried Topamax, but after my 2nd day on it, I couldn't function without being in a fog. I couldn't spell the word 'white' Not good for a 2nd grade teacher! Did anyone here ever have the fogginess, then try it again? Did the fogginess go away after awhile? I'd like to try it over the summer when I'm not teaching, if it may be worthwhile.

Some have said that titrating up more slowly and staying at a low dose they were able to tolerate it better (it got a little better over time), but yes some folks just can't. Another med in the anti seizure class such as Neurontin, Lyrica, Depakote, Keppra, etc, may be a better idea. I got pretty similar side effects on a few of them (so bad I won't try them again), but Topamax was definately the worse. I actually did give it a few months try...quite tough. If it was me I would try something else because it is probably a long shot that you could tolerate it, and if so, it would be below a therapeutic dose. I don't think its that more likely to be helpful than anything else. Best wishes.

I was on topamax for a year and a half. I did notice cognitive side effects, as well as pins and needles in my feet, but they were not severe enough to make me want to discontinue it. I wasn't working at the time so it is wasn't that important to be 100% sharp. It was a good drug for me, but after @ 18 months it didn't seem to be as effective, so I reduced the dose from 100mg to 0mg in around 9 days.

As Kate said, it is important to increase your dose very slowly in the beginning i.e no more than 25mg per week. By doing so you decrease the risk of serious side effects, and tolerate the medication better. Having said that, topamax is either a drug you love or hate, it is very individual. I do remember feeling quite out of sorts for the first week or so, but after that things started to settle down.

If you can, maybe give it a bit more than two days to make a decision. If you still feel the same way after a few weeks, then it's probably not a good match for you. Best of luck.

Post edited by: suki17, at: 04/28/2012 08:55 PM

thanks so much for your quick replies ladies! Suki, sounds like the DHE is working well with the ONS! Good for you

I think it also matters what dose your doctor starts you on. I have heard of occasional neuros (usually not headache specialists) starting people on 100 mgs and then being surprised when they complain about side effects. I can't imagine starting anyone that high unless they were having terrible seizures everyday or something because they almost certainly WILL have bad side effects.

If you are having the fogginess at 25mgs though, it probably isn't going to be the med for you, even if you might be able to cut them smaller or something (And make sure to ask a pharmacist or doctor before you do that, I don't remember if you actually can cut them without messing up the dosing or not). If it has that much effect on you, even going slowly, it will probably still be too strong and you really do need your brain to work.

I have some fogginess on it, though it is hard to tell how bad it really is since I am not working so I don't have regular tasks to give me benchmarks of how I am doing.

I have found that for me, with time, having been on topamax for nearly 6 months now, my mental fogginess has somewhat lifted. I have less occasions of stumbling over words, and I am not forgetting basic conversational words as much either. It used to be, "hand me the whatsitcalled, and can you call whatshername". I'm still scatterbrained, but I'm wondering if being on the same dose (100mg) for all this time could have somehow settled things down for me?

It did get better each time I adjusted to the dose. So starting low and titrating up slowly helped although I still got the cognitive side effects and had trouble with spelling and numbers which made my job very difficult. I would recommend trying it when you have some time to adjust if that is at all an option.

Ashley was on Topamax almost 2 months. She didn't have the foggieness. Her problem was her hands tingled and hurt so bad she couldn't hold anything and her feet hurt so bad she couldn't stand for too long and it hurt to walk. It wasn't doing anything for her headache so she went off it.

I was SOOOOOOOO stupid on topamax. I was in the fog for 3 months. My memory went to hell, too. I struggled at work because I had to speak with lots of potential clients or co-workers over the phone and I just couldn't think of words mid-conversation. I don't even remember how much it helped with my headaches, if at all... I know the pain was still there, but maybe it made me too dumb to care. I also got the weird tingling in my feet. I'd occasionally just start giggling at how silly my thought process had become and how impaired I was. Needless to say, I didn't stick with it.