Hi, Everyone!  After 3 years (and, of course, we thought he'd never get them again) my husband started a cycle about two months ago! His PA started him on Topamax and when the headaches didn't improve referred him on to a neurologist who then has worked him up to 100 mg. a day.  He also uses Ergotamine which the neurologist is having him take not just at the onset of a ch but has him spreading them out through the day.  He also uses O2 which is like a lifesaver.  The ch's are getting less painful and less frequent with the Topamax but his problem is the nasty side effects - the dopey feeling it gives, the memory loss (we pray that's not permanent), tiredness, and sore muscles.  When doing a search on the internet, I ran across an all natural product that claims to prevent migraines.  I emailed them asking if by migraine that also included cluster headaches since they aren't considered a migraine.  I got a reply that, yes, it did include prevention of cluster headaches.  I am very suspicious since no word has come out that there is a miracle cure for these horrible headaches!  Has anyone out there tried the Tuliv Migraine Defense?  The web site is START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.  I am suspicious of this making such BIG claims but at the same time very worried about the side effects my husband is going through!  I continue praying for the cure for my husband and ALL OF YOU!  Would appreciate any feedback!  THANKS!

It doesn't sound familiar to me.  CH is not migraine and I would not waste my sanity and money on some half baked concoction.  I took topamax up to 600mg a day and definetly know the doppy feeling you get from it.  The memory thing doesn't go away as long as you are on it.  If that is a side effect you can't live with ask to try verapamil or lithium.  Those meds are a lot easier to take and have a much higher sucess rate with ch.

You can try Neurotonin as well. I couldn't stand more than 25mg of Topamax, lol (even that was giving a side effects). I didn't get relief from Neurotonin yet (2 weeks) but I hope I will with bigger dose.

Karla wrote on Jun 3^rd, 2008 at 7:59pm:

The memory thing doesn't go away as long as you are on it.

I thought my memory got better with time. But, maybe I just forgot that I wasn't remembering.  ;D

~Kris

In the old days, patent-medicine hucksters traveled from town to town in wagons, putting on "medicine shows".  Nowadays, all they need is a website.

Just me, of course, but I wouldn't waste my time and money on it.    

Best wishes,

George