So, just who is leading the research in cluster headaches?

I've heard mention of Cluster Busters (although haven't made my way to their site yet, should do soon), and have read a little about them getting the study started on a variation of LSD. (If I have that right)

There is the migraine centre in London that I've heard about, although haven't been myself. I have no idea what centre's there are in the US, or which ones are the best, or who or which ones are looking into clusters specifically.

There is this deep brain stimulation research going on, which seem very cool! But probably only reserved for the more extreme sufferers amongst us, which probably isn't me.

A friend recently told me he saw on some breakfast show that 'they' are testing botox injections for cluster headaches. I'm sure he got it wrong. I know botox helps with certain types of migraines, but surely not clusters. I haven't been able to find anything online about it yet.

If someone had the money (not that I do), and wanted the very best treatment in the world, where would they go? I guess that's what I'm asking.

Renée

Quote:

If someone had the money (not that I do), and wanted the very best treatment in the world, where would they go? I guess that's what I'm asking.

You'd put that money in the bank, save a couple hundred dollars or so, and buy a fungus propagation kit.

Brew wrote on May 16^th, 2011 at 9:58am:

Quote: If someone had the money (not that I do), and wanted the very best treatment in the world, where would they go? I guess that's what I'm asking. You'd put that money in the bank, save a couple hundred dollars or so, and buy a fungus propagation kit.

What Brew said.
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       Potter

I guess what I'm saying is, you asked who's in the lead.

You are. Honest to goodness, no doctor has come close to treating this condition the way Mother Nature has.

I have had this condition for around 20 years. I've suffered with it for the first 19 of them.

I was diagnosed in 1982 and suffered until I quite by accident ate a jag of shrooms (strictly academic mind you)  I've been PF. for 2300+days.  I do keep a full M-tank in the shop.

            Potter

I agree with the above posters, plus I'd add that in addition to clusterbusters.com, the leading research, although not strictly formal/scientific, is being done right here, as I believe this is pretty much ground zero for high flow 100% O2 and high dose vitamin D3 regimens.

Not that there hasn't been some D3 controversy -  I believe a guy came on here advocating it awhile back, and was dismissed as a quack or something, then banned. Maybe that was more about his way of presenting it or something - I don't know the whole story. At least the D3 is catching on now.

I suppose Harvard Medical could be considered a leader, with their proposed trials of BOL, but I think they're still looking for funding, so it's not a place (yet) to go for BOL treatment.

Then there's this "treatment center" :D - the only one I know of where reputedly one could travel to tomorrow to procure powerful yet legal clusterbuster treatment, albeit in a highly informal and totally unsupervised environ: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Someone I know from another site said they were given beta blockers for their clusters, and it completely stopped them. I'm doubting they were diagnosed correctly. Beta blockers, for clusters!? I've never heard of that, but I'm fairly new here.

Beta blockers for migraines, sure. But for clusters?

I did kinda suspect WE WERE the cutting edge, and Cluster Busters of course. People ask me all the time what the doctors are doing about it, and I reply that I've tried pretty much all that is out there, and I just wanted to make sure that I was pretty much right with that answer. OK, haven't tried shrooms. Not sure I'm that desperate. Will stick with the D3 for the moment.

Basically, the doctors AREN'T doing anything about it, not on a large scale anyone. I know a few are, but it's a small problem affecting a few people.

xx

Until someone who is rich and famous and trendy hip comes down with the beast (maybe Brad Pitt) it won't get the attention we so richly deserve. It remains up to we suffererers, we few, we unhappy few, to leash the dogs of cluster cycles, while we cry (havoc) in pain. Apologies to all fans William. Blessings. lance

Would be a good question for Doc Goadsby at the OUCH convention.  I know different Dr's are studying various aspects of CH.  Do they communicate with each other?  Is there a core group of Dr's leading the CH research?  Who's looking for a cure and not just another treatment?

Bob P wrote on May 17^th, 2011 at 8:03am:

Would be a good question for Doc Goadsby at the OUCH convention.  I know different Dr's are studying various aspects of CH.  Do they communicate with each other?  Is there a core group of Dr's leading the CH research?  Who's looking for a cure and not just another treatment?

bump