Ok, so here I go again asking about the wacky theories.  Hope you guys don't get annoyed with me. :P  A friend of mine has a condition called hip displaysia, where the bone in her hip is disintegrating.  Very painful, and she can't get around much.  At this point, she's on the list for a hip replacement, but back when it started making her immobile, she used to eat Goji berries and found it reduced her pain significantly.  She also recommended it to friends with Crohn's disease and migraines, and it worked for them too.  Now I know that clusters are completely different, but since this is a non-pharmaceutical, reasonably cheap experiment, and we're still waiting to get in to see the neuro for O2, we're probably gonna give it a try.  Absolute worst case scenario is it turns out to be a trigger and then we stop.  Just curious if anyone's ever tried this and if they had any results at all, good or bad.

Thanks for putting up with me, and my (probably) stupid questions.
J.

No question is stupid...at least, that's what I would tell my students and I think it is true. Question: if you are willing to try something that has worked for another condition, have you exhausted what has worked for many of us in the past? Things like energy drinks, melatonin, kudzu, ph adjustments, and triptans? Since there is a growing body of anecdotal evidence such things have worked, they're certainly worth exploring. Personally, I'd do that before I tried something brandy new. Just me, though. Blessings. lance

Absolutely. As Lance said, most of our best treatments were found by accident. I think the odds of success are low...but 30 years ago I might have snickered if you suggested huffing oxygen would help. Keep notes as to dosing, and any improvements in symptoms.

Joe

I certainly can't say we've exhausted all other possibilities.  Been gathering a lot of info and seeing what's out there.  Seeing the neuro on the 16th so we can get O2 and maybe Imitrex then.  In the meantime, just looking for something we can use that doesn't have drug interactions or side effects.  (Still dealing with the effects of the prednisone fiasco.)  I understand you shouldn't use the energy drinks with verapamil.  Not able to get our hands on any of those "psychedelic" remedies at this time.  Melatonin has been keeping the night terrors at bay, but sure isn't helping him get more sleep (probably because we're trying the water too :-?).  I've heard of kudzu root, think I read somewhere that you get it at health food stores?  Is it an abort or a prevent?  How do you use it typically?

I've been using Kudzu for several years now as an alternative to Verap and Lithium, and have found it to be equally effective if not better, and without the side effects.  In fact, I just upped my dosage about a week ago and have been hit with nothing higher than a K4in the last four days.  (knock on the head in lieu of wood

There are several suppliers and strengths available.  I've found "Nature's Way" 613mg capsules to work best for me.  I buy them online from Swansonviatamins.com for about $6.00 a bottle of 90.  There are sources as well, but I've found Swansons to have the best service and they will price match any you find.  (No, I don't own stock in them, but wish I did! :D)  Watch their ads closely.  Sometimes you can get free shipping, etc.

As to the Goji berries, go for it.  I don't hold out a lot of hope for you, but they are supposed to be nutritious and good for other things.  I had them suggested to me also, but thought they were rather pricey for the benefit that was possible and never tried them.  Please pass along your results good or bad.  That is how we all learn.

Jerry

Yes, Kudzu root can be obtained at health food stores or as pointed out above, ordered online.  That said, if you're going to try Imitrex or are already using some type of triptan, don't mix Kudzu with triptans, you run the risk of serotonin syndrome.  When Gary tried the Kudzu, we knew within a few days that it was helping reduce the intensity of the hits.  Journaling the number of hits, how long they last, and their intensity helps identify what's helping and what isn't. 

As to the Kudzu, the problem Gary had was that his GI system couldn't tolerate it.

Great warning on kudzu and triptan, Garys_Girl. As to mixing verapamil and taurine...it's not that you can't, as an abortive, occasionally. It's you don't want to take both prophylatically daily. You can use the energy drinks if you're on verapamil (I know, I am and I do) it's just good to be judicious in its use. I had trouble explaining this to a well meaning friend who went out and bought me a bottle of taurine pills, and wanted to know why I wasn't using them if they helped. Even OTC additives have side effects. So does ice cream, for that matter; and chocolate...and donuts...and

An excellent point that bears repeating on occasion Lance. We use a lot of high horsepower meds, that when one has been taking for 5, 10 even 30 years or more, you tend to get lacadaisical  (sp??)  and play fast and loose with useage, dosing and mixing with supplements...prescribed and otherwise.

Whether it be the issues with Taurine and Verapamil, the mixing of triptans, the potential dangers of long term steroid use, the dangers of not following the tapering of steroids, or even the dangers of concentrated oxygen in enclosed areas, always talk to your doc about what your adding to your mix, or what doses you're adjusting......and it never hurts to run it by this board. If you're about to make a dangerous mistake, someone here has probably already done it once and can red flag you!! ;)

Joe