Hi, Seethestars:

I have been on Topamax [topiramate] for over a decade now. Initially we started it for mood stability as an add-on after Depakote and Neurontin and [something else, can't remember] were epic failures. There was some reason we were holding off on the lithium, but I don't remember why at this point.

I started on Lamictal [lamotrigine] and then we added the Topamax. I didn't really have many problems with either, the exception being when we wanted to lower the Topamax and did it too quickly- went immediately from 300mg to 200mg and I forgot how to spell and also started using a lot of synonyms interchangeably whether they were the precise word I intended or not.

Other minor issues were tingling when increasing or decreasing dosage- often on the tip of my nose, on my cheeks, on my shins. This goes away eventually. Also the flavor of chocolate changed and i was convinced that nothing retained carbonation for longer than about 3 minutes.

Also, oddly enough, my pitch perception and adaptation changed about a quarter to a half step. And yes, it was the topiramate. We happened to discover it was a rare side effect associated with the medication around the time i realized I had no idea how to sight read and match pitch anymore. [So I had to figure that out again]

Potential serious side effects that I didn't get [yet] but should absolutely be considered:
Kidney stones. These are not terribly uncommon. It is really important to drink a lot of water. By some bizarre trick, I've managed to not develop even one [I started taking it around 2001], but that is kind of uncommon.

Higher risk for glaucoma. Need to make eye doctor aware of this potential issue and keep regular eye check ups.

Cognitive side effects. The extent of cognitive side effects for a lot of medications tends to be over exaggerated at times. For Topamax, it's not usually an exaggeration. People can get REALLY REALLY STUPID. I fortunately only had that spelling thing when we tried to drop the dose too fast. For some people there is a "sweet spot" in which your brain will be ok with the med and cognitive effects aren't an issue. Some people have the perpetual duh however.

Other interesting stuff:
I've noticed that I heal faster with topiramate and my nails and hair grow much faster. My appetite is supressed, and this has been true even though I've changed the dose numerous times. However, the appetite change only is really noticeable for about quarter to a third of people, sometimes it goes away, and if you stop it and then start it again, it's likely to not return.

Topiramate also sometimes can make it easier to stop smoking.

So why am I still taking it?

Art this point it is mainly for seizures, secondary for migraines, tertiary for mood.
It really was never considered a first line for mood stabilization, but is used as an addon or when first line or typical mood stabilizers have been exhausted or only have some effect or as an addon to counter weight gain.

What I have found very helpful is that it does seem to have an effect on impulsiveness for me and this weird kind of anger/frustration tolerance thing that some other people with bipolar that I've talked to seem to share. Many that I've known who can relate to those type of experiences have also found topiramate very helpful.

So I mean, overall, I wouldn't say it's something to run to. If other things haven't helped [like lithium, which I highly recommend- I was on it for quite a while in conjunction with the topamax but it agitated seizure activity] it could help, but it's not for everyone.

Keep in mind a lot of this is either my personal experience, or stuff i've gathered from various prescribing sheets- but I didn't look it up right now so you should still consider that my experience and not like, official gobbledy gook of professionalness.


Josie