My doctor just prescribed Topomax as a secondary medication (using Oxcarbazapine as the primary). I was curious if anyone has taken this and how it affected you. Thanks.
My daughter has been on this medication for a while now. It works great. Just give it some time to let the side effects diminish. Don’t give up to early. This is just about the only one that she isn’t allergic to and that actually works for her. If you have any questions please don’t hesitate to ask!
Jodi
A friend wanted me to post that (as with any medication) there are side effects to look out for. Make sure your physician tells you what the side effects may be and what to do if you experience them.
Ben
Hi Debbie,
I am no longer on Topomax, but was on it for almost 2 years. It worked great, but then my body got used to it. As Jodi said…give it time. I had a lot of problems at first, but try and stick it out for a month or so to see! Good luck and I hope it helps the pain.
Ally
Hi Debbie, I’ve just been prescribed Topamax a couple weeks ago. I’m currently on 1200mg Tegretol 100mg Topamax increasing to a max of 200mg in the next few weeks and then i’m hoping i can start lowering the Tegretol. So far I’ve had little appetite and definitely put off any fatty foods - in fact, quite a few nights i’ve been put off red meat altogether and have been sticking to tuna. Other than that I would say my facial pain has settled down alot and before i went on the Topamax I was having alot of eye strain and couldn’t stay on the comp very long but that seems to have dissapated - the Neuro thinks i’m getting a migraine/ATN mix - of which i think so far it looks like he must be right about (still early days though right?). I also find that i need to constantly spell-check and have developed a little stutter but nothing like the horrible memory loss off tegretol you get though…
Debbie,
I haven’t tried Topomax. Is that mainly a migraine medicine? Both the neuro and surgeon told me to keep my migraines under control which means don’t hesitate to take my migraine medicine at the beginning of one. I used to wait to see if it was just a headache or a migraine or I would suffer through a migraine for three or so days. But I don’t do it anymore. My last big flareup before surgery started with a bad migraine. And that day I took my migraine medicine but it didn’t work.
Liz
Thanks for all of the responses so far. I do not have migraines, but this has been known to work for TN. I am currently taking Trileptal and was on Lamictal as a secondary medication, which I was always sensitive to. As soon as I changed from Tegretol to Trileptal, I think I had every side effect possible from the Lamictal. So I went off of that and onto Topamax. I am feeling a bit disconnected and not really driving, but the Pharmacist told me to hang in there, it should get better.
i take topamax. i take a low dose of 100mg. the most problematic side effect is some word searching ability, but again, i am on a low dose.
topamax has a low risk of kidney stones and glaucoma; increase your water intake and watch out for eye pain; if the latter occurs suddenly, discontinue the drug and contact your doctor.
the researcher
started topomax 5 weeks ago and can’t believe that it’s taken all these years to finally find a med that works!!! Started at 100mg, got as high as 300 mg but have backed down to 200 mg a day. Side effects are awful, like I’m drunk- is the best way to describe it, but not as bad as the oxcarbemezpine. If I’m sitting in one place too long I’ll fall asleep. However, the burning pain is gone but has been replaced with a little bit of tingling around the mouth and nose. Also get faint, dizzy and don’t have an appetite most days. Seem to have some problems focusing eyes, remembering words and names, and staying on-task. Benefit definitely outweighs the side effects, even though they have been very difficult to work with. I believe I would have done better if I had taken long term sick leave while i adapted to the meds.