January 6, 2015
Has anyone had any good experiences with butterbur, an herb? I have been taking Petadolex, which is a butterbur with toxins removed (they can badly affect the liver). It says it takes a few months to build up in your body before you feel any help. It's been about three months for me, and I can't really say if it's helping or not. I do have a lot of other things going on: I've come off topiramate and am still in the withdrawal stage, plus my doctor started me on Namenda. I do know the migraines I am getting are less severe and easier to get rid of than before.
But whether the help is coming from butternur or Namenda is hard to tell. My Namenda dosage is still really low, 10 mg.
Nancy Harris Bonk37
January 13, 2015
I'm happy to hear your migraines are not as severe and easier to treat, that is great news!
Butterbur was frequently suggested for migraine prevention by migraine specialists until recently. If butterbur is not processed properly, it can be toxic to our liver. Dr. Mauskop, a migraine/headache expert, discusses butterbur more thoroughly in this article; https://migraine.com/blog/draft-herbal-remedies/.
January 27, 2015
My neuro told me that petadolex has recently gotten into some trouble for not removing the toxins thoroughly enough and that there have been several people taking it with reported liver problems. Maybe try researching it a bit and ask your doc to reevaluate if taking it is still the best option for you
January 27, 2015
It's been my understanding that the problem between Petrodolex and the German government is pretty much a bureaucratic affair, with Petrodolex coming up with a new detoxifying process but not wanting to go through the expense and paperwork of a new blessing from the German gov't. From what I've read, Petrodolex has an exhausting process of detoxifying the butterbur, and its American distributor, Enzymatic Therapy, is very responsible. This is the first time I've ever heard of anyone reporting liver problems. (And I'm very attentive to that having had liver sensitivity ever since I had mono as a teenager.)
However, I'm due to take a CBC test this week at my doctor's (mainly to see if the Topamax that was damaging my kidneys is finally out of my system). It will also test my liver enzymes, so we'll see if there's a problem.
I never told my migraine doctor I was trying butterbur. I was waiting to see it did any good first. Maybe not a great plan, but I take lots of vitamins too, and it's hard to catalog everything for him.
Seems the jury is still out on whether butterbur is working. Nancy, I think you got the wrong idea from my previous post. I have had fewer and not as severe headaches, but it could be the Namenda I'm taking that's doing the job. The doctor just boosted it to the working dose of 15 mg.
Stopping the Petradolex for a while will be an easy way to see what's been causing the slight improvement.
January 27, 2015
If you want to know about the safety of nutritional supplements, the best place to go is the Natural Products Association. They are THE organization that polices the supplement industry. If a product has their GMP certification, then it can be trusted to exceed the manufacturing and processing safety standards required by DSHEA ("de-shay"), the Dietary and Supplement Health Education Act. When my family ran our health food store, we would only stock products with GMP certification because their labs were pharmaceutical grade or better.
Petadolex is considered generally safe when used as directed. It is free of harmful pyrrolizidine alkaloids. The controversy is a political one. You wouldn't believe how political the supplement industry can get. When the purification process was changed (to remove even more PAs), the German regulatory board required the company to undergo expensive safety testing to prove what everyone already knew -- that Butterbur with the PAs removed was safe for human use. The decision to decline this testing was a business decision and in no way affected the quality of the product. The company had already invested in development and safety testing here in the U.S. but Germany wouldn't accept those results.
When you consider the toxicity of Depakote, Lithium, and other pharmaceuticals (even Tylenol!) used to treat migraine, Petadolex begins to look tame. I would still want my doctor to know that I was taking it. I would also ask for baseline liver enzyme tests and periodic monitoring just in (rare) case toxicity occurs. Considering all the dangerous medicines we use routinely to treat migraine, all this fuss and worry about Petadolex seems misplaced.
Yes, I am biased in favor of nutritional supplements and desperately wish one of them had been effective for me. If it would do any good, I'd be taking Butterbur instead of Verapamil (hard on my heart), Amitryptiline (gives me dry mouth and weird dreams), Amerge (also hard on my heart), and Botox (awfully expensive!).
Tammy (writing as a fan of supplements, my opinions are not necessarily those of Migraine.com or other Patient Advocates.)