March 10, 2016
I'm a chronic sufferer n I also have hemiplegic migraines so triptans r out. I'm on 6 preventative meds including 600mg of Topamax a day. Has anyone else heard of taking a dose this high? Last month I had 17 migraine n hangover days. My neurologist says there's nothing left to do but Botox n I've heard so many mixed reviews regarding this. Anyone have any thoughts?
Nancy Harris Bonk37 Moderator
March 12, 2016
Thank you for your questions, I'm sorry you are have a rough go of things. Let's see what I can do to help.
The first thing that comes to mind is seeing a "true" migraine and headache expert, let me explain why. These doctors are different from neurologists in that they are board certified in headache medicine (which is different than being certified in neurology) and treat one condition all day, every day - migraine and headache. Neurologists may be fine doctors but have a hard time being experts in one area because they treat so many different conditions such as stroke, epilepsy, multiple sclerosis, Parkinson's and others. Here is information on why these doctors are special and how to find one; https://migraine.com/blog/really-find-headache-specialist/ and
Hemiplegic Migraine (HM) is a rare form of migraine that is best managed by an expert. If you haven't seen this information on HM, take a look; https://migraine.com/migraine-types/familial-hemiplegic-migraine/ and https://migraine.com/blog/migraine-diagnostic-criteria-important-updates/ and https://migraine.com/migraine-types/hemiplegic-migraine/.
The recommended dose for Topamax to treat migraine (not HM - I'm not aware of data for HM) is 200 mg. Research has shown doses higher than that are not effective. https://migraine.com/migraine-treatment/topamax/how-well-topamax-works/. This is why it's important to see an expert.
I hope this helps - let me know.
May 12, 2016
I've also been a long time sufferer of migraines. I've been on a number of preventative meds including Topamax - which has been my longest and most effective. At my highest, I was at 1200mg per day (which my dr did not like but kept me only for a short time) I am currently at 600mg per day (2 200mg in am and 1 200mg in pm) and this seems to work well. We have tried dropping below this but the frequency and intensity of the migraines increases. We also do nerve injections which are not as long lived as Botox, usually up to six months (Botox when applied multiple times lasts longer) but are covered under my insurance. I DO NOT claim to be an expert by any means, this is just my experience, if it helps you or I can answer any further questions for you please feel free to contact me. You are not alone in this fight.
May 13, 2016
Thanks again for sharing 😀
I am glad you found a dose of Topamax that works well for you.
Jillian (Migraine.com Team)