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Mayo Clinic Minnesota USA: Experiences?


Echo
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Hello everybody,

Are there any CH patients here that are being treated at the Mayo Clinic in the USA? I was told today that they are the leading experts when it comes to CH. I was wondering if anyone has experience with them and knows what sort of treatment options they offer. Perhaps they even offer some experimental treatments other hospitals don't offer? Please let me know.

Thanks for the feedback, it's greatly appreciated.  :)

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Echo, now there's a name I haven't seen in a long time, but to your ?

I can't say how it is there now but in 87 I went there and they were the team that gave me a positive diagnosis agreeing with my original neurologist from Rush Saint Lukes in Chicago.

I would hope and assume that they have only gotten better over time.

Best of luck always......Tim

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I suspect it depends on what you're comparing it to.  They probably know more at MC than your typical crappy neurologist knows, and might explore more thoroughly than that typical crappy neurologist.   I'd bet a lot that they don't know more than a Dr. Goadsby, or a Dr. Kudrow, or that Cleveland Clinic doc that some people like. Guaran-darn-teed they don't know more, or care more, than Dr. Brian McGeeney.  You can check out the MC website and see what they're talking about -- http://www.mayoclinic.org/diseases-conditions/cluster-headache/basics/treatment/con-20031706.  I don't see anything new there (except one thing, octreotide, that's not new (studies in 2004) but was new to me (it doesn't seem very special).  Maybe they keep their miracle cures secret.  Not saying you wouldn't get good treatment there. I just seriously doubt that there's a breakthrough waiting.  If there is, please let us know.

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Guaran-darn-teed

Cool!  :D ;D 8-)

Given an opportunity to make an appointment at either Mayo Clinic, or with Dr. McGeeney, I would unhesitatingly opt for Dr. McGeeney.

Of course a whole lot of us long time CH'ers here have found the research at Harvard medical etc. to be true: there are natural substances that are more much more effective as long term CH preventives than anything available by prescription.

If you haven't heard much about it yet Echo, I think this Newsweek article on the subject provides a good intro:

http://www.newsweek.com/treating-cluster-headaches-psychedelic-drugs-81473

(this article doesn't however cover a currently popular "busting" agent, the mild acting Rivea Corymbosa seeds, AKA "RC", which can be ordered online).

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