I had an appointment with my neurologist today and she prescribed me Topamax to relieve my pain. I was wondering if anyone was on or had previously been on Topamax. I know there is no "magical Chiari medicine", but I'm hoping this will work. My main concern with it so far is that it has increased my dizziness a lot. (Dizziness has been something that I've been struggling with greatly for the past 6 months). It's my first day on the medicine, so I'm hoping it will pass, but feedback would be greatly appreciated!

I have been taking Topamax for a year or more more my headache/migraines (I am at a loss for what to call them anymore). Anyway, it worked well for me for a while. I would only occasionally get headaches that were much easier to deal with. I have been on 50 mg 2 x per day. I actually went to the PCP today and they increased me to 100 mg 2x per day. in hopes that it will go back to working as well as it had before. I can handle the control it had it under one headache/migraine per month a lot better than daily headaches! Hope this was helpful for you, but really it just is up to your expectations. Also, is your dr tapering u up to the dose he wants you on? This is not a med you just jump into. That could explain the dizziness.

i'm on generic topamax and i do like it but let me warn you that it was MISERABLE the first 12 weeks. I was SO sick weaning on to the medicine, I almost stopped it. But, since starting it I haven't experienced any aura with my migraines (I would get tunnel vision, very scary!) and my actual headaches with my migraines aren't bad at all - now I still do get migraines fairly often, but I rarely get the headache part - it's jaw pain, back pain, nausea, etc. I'm only on 50mg topiramate, and I did lose about 5lbs on it (it's a well-known weightloss pill) - although you mainly see weightloss with 100mg+. Also, it is an epilepsy medication, so you may get questions at the pharmacy, etc if you have epilepsy and you'll just have to explain that no it's for migraines.

It helped me get out of a very bad headache/migraine cycle. That being said, we nicknamed it dope-a-maxbecause I lost all brain power on it. Couldn’t remember anything, used a lot post its, etc. I took it for about a year.

Also lost hair on it.

It was rough,but it did help.

I liked it because it helped my Migraines I was at 100mg and it did help me lose weight but they have named the pill "Dope-a-max" or "Stupid-max". It was bad at times......... It caused great brain fog. It never helped my pressure headaches........and that is what I need to control the most.........short of more pills, I'm really feeling that it will be with me the rest of my life, sometimes it gets worse than others.

I am no longer on it.........

I am so relieved to hear other people experienced a hard time coming up with their train of thought. I kind of thought I was going crazy. And trying to explain how I feel while on this medicine... forget about it, haha. But I'm not taking as much as the doctor prescribed to me because it did make me super loopy. I figure once I get more acclimated to it I can increase it gradually... is that a good idea, or will I pretty much be constantly dopey on this medicine?

I basically felt dopey the entire time. I both hated the stuff and appreciated it for how it did get me out of the cycle.

been on it for a long time... the biggest issue ive had with it is....numbness in hands...but then again that med didnt make it any worse then i already had but doc didnt want to raise dose anyfurther because she didnt want to progress the numbness...

never felt "loopy" "dizzy" or anyother side effect other then the numbness

hope this one works for you! Good luck

I have been on Topamax for about 7 years. First for hydrocephalus and V.P. shunt and now for the Chiari. It helps to some extent,as much as anything else does. Weight loss it a big problem,so keep track of the amount you lose. I got under 100lbs!!

I already had dizziness before this medicine, so it could just be a coincidence that it's intensified. One of my doctors said dizziness is a side effect of my chiari though. One of the worst in my opinion :/ Yes, I am aware of the weight loss, so I will definitely keep an eye on that. You guys are so helpful, I can't thank you enough!

I have been on topamax 75mg X2(worked up) for 8 weeks now still nothing. I don’t get dizzy at all. Just really bad headaches, nausea, sleep issues, and really bad vestibular problems.

I found that on topamax my dizzy spells were worse too. Taking it at night before bed was best for me. I have 4 children and being dizzy just does not work for that. (although taking it at night when you have a fussy baby doesn't really help either lol) ..... It worked during the day like it is supposed to but I didn't have the dizziness that I had while on the topamax

I'm on 100 mg and have been for about 5 months. I have not noticed a difference in my migraines whatsoever, nor have I noticed any side effects. So basically, I might as well be taking a placebo, as I don't even feel as if I'm taking anything!

Hmm... well, hopefully since I'm dealing with some of the negative side effects I'll reap some positive effects as well. Sorry it didn't work out for you though :(

I think I'm at 3 pills 50 mg at night and I feel the same way as Sparkyschick does other than help me control my appetite (which I like) I haven't found anything that helps my headaches yet.


I have been on Topamax on and off for years. Your Dr. may need to work on the dosage depending on if the dizziness keeps up. I had to get off it because I was getting immuned to it. At the beginning it did work great! I had the Topamax for everyday and also Imitrex for when the headaches became too bad. It got to the point where I was taking more Imitrex than I was Topamax.

I may be talking in circles but I hope this helps.


That does make sense, Patty. I will make sure to keep my doctor(s) informed of my side effects to make sure I'm being treated well. Thank you!

I was on it before decompression, it was bad stuff for me. It made me really loopy, I didn't really care about anything anymore and it didn't help my headaches at all. Everyone is different though, hope you get some relief from it : )

I and my sister are diagnosed with Chiari Malformation, she is taking Topomax twice a day @ 100mg, I at 75 mg. It works for the both of us. Imitrex for the really severe headaches. The weight control benefit is cool, too. My sister would laugh at me for saying that! I hope you find relief in taking it soon. :)

My neurologist just doubled my dosage and I'm having intense hallucination... This is different from the "dopiness" I felt when I first took the Topamax. Is this normal?