Anybody have any luck with Topamax? If so, how quickly did you see a positive change? My daughter was given a one month prescription since she hadn't tried it but has tried every other treatment, medication and alternative anything we could think of. NS said it probably won't help and we shouldn't lower or raise dosage. Just try and if no good, forget it. Surgery is pretty inevitable.
It has been two weeks on the Topamax and the side effects don't seem worth it to her AT ALL. So, we are wondering if she's given it a "reasonable amount" of time.
No, I haven't called NS...NL's and him are on different pages...NL's seem to be on different pages than each other even. I may end up calling the NS but am looking to see if any body here has first hand, real experience taking this stuff. THANK YOU!
Usually takes 14 for new medication to start working. I am not sure of your situation but I know several parents of children with Chiari and I myself have it. Topamax is a drug that is use around here a lot for symptoms, it originally made for seizures and the they found it works for migraines, but Chiari is not actually a migraine most people have pain, numbness, and dizziness because of the pressure the herniation is causing on their brain stem, and if you can relieve the pressure things can usually get a lot better. I myself did not have any luck with Topamax. Children do much better after surgery then most adults. The thing with Chiari the longer it goes untreated the more problems that seem to go a long with it. Every child that I know with this has undergone surgery has return to a normal life in just a short few weeks. I have a child with a terminal illness so I can understand your concerns. If I can help let me know. God bless you!
It works for me, but unfortunately my body doesn't tolerate it well so I have to stay on a very low dose (which DOESN'T work). Both times I've gone on it it's taken me about 2 weeks to stabilize out and see a marked improvement. I know you only have a month, but just give it a little bit to really kick in. I guess it depends for your daughter what the side effects are and if she's ok with dealing with them, when I was on a higher dose my hands and feet would tingle constantly, and at one point my entire face went numb and that's when I went down to a low dose every other day. If she's having the tingling issues, have her drink water, it can make it go away.
My NS also suggested I try some different headache meds before doing surgery, so I understand where you're at. I'm currently waiting on a call back from the surgeon to schedule mine because I'm tired of seeing all of these different doctors. I hope everything works out for you and your daughter, and that you BOTH get some relief soon.
Topamax worked instantly to stop the aura I was having with my migraines. It was a miserable 8 weeks, but it was worth it, topamax made me really sick for about 2 months, but I didn't stop it because it cut down my migraines considerably and I was no longer seeing bright flashes of light in front of my face. I started 2 weeks on 25mg, then up to 50mg. About a month ago after being on topamax for about 8 months, I finally doubled to 100mg because I had a migraine every day for 3 straight weeks, - taking 50mg in the am and pm and the daily migraine stopped! It does make you a little "slow" I often forget the word I want to use, and sometimes do other "dumb" things I wouldn't normally do (spell words wrong, get confused easily), luckily I haven't screwed up anything important at work and although it can be embarrassing I then tell people I have chiari and it leads to an interesting conversation :)