For those that don’t know, I work at Stanford University as an IT manager for a medical research center. Center for Heath Policy. It is nice to work with doctors because they understand what I am going through and have been very supportive of me, yes I know how lucky I am. One of our head researchers who has like three masters degrees in psychology is very close to me and is always asking how I am and worries about me. She asked me the other day if I had ever looked at the NIH site to see if there was any clinical trial that may benefit me, I hadn’t and we both went looking, an hour later she came back to my office just disgusted that there was not a single trial being ran on anything for headaches. Does anyone know of any headache trials that are being ran or any organization doing any serious work on headaches or are we all just screwed? :-/

Hi Matt,

Dr Sheena Aurora of "Swedish Pain and Headache Center"....Swedish Hospital here in Seattle does research. They once invited me to participate in a Botox study...it was for migraine... and when i said CH...was disinvited.

Haven't followed up to see what other studies are underway or pending...suspect if ya got ch you ARE screwed...but if ya got migraine...welll

best,

jon

Do a search on McLean Hospital, Harvard University. Or Dr. John Halpern. Or Dr. Andrew Sewell.

Thanks this is great.
To cool my researcher is from Harvard so I just asked if she knows these guys, if she does guarantee you she will be contacting them for me, nothing like the inside line to people to get things done.

Bummer, she does not know these guys and only turned up treatments I have already tried.

Hey Matt, I will have to go back through my links to check, but there have been several trials and studies ongoing;  off hand I don't know of any specifically for SUNCT, but I will check through and see what I can find.

There is a new research institute that just opened as well - Dr. Alan Finkel, formerly with the University of North Carolina, has opened a private headache clinic, Carolina Headache Institute, and alongside it they have formed the Carolina Research Institute.  I know he is presently involved in at least one research study, and the institute has others listed on their site.  I have an appointment with him on the 22nd, and I would be happy to ask him if he can direct me to any current studies, trials or research on SUNCT as well as CH.

You can check out the current (publicized) studies at:
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Dr. Finkel and Prof. Goadsby are associates as well, and he may know of other not yet public research that Prof. Goadsby may be involved with or know of.

Cat

Some research past and present.

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In the search field copy and insert this    "cluster headache"[All Fields]   for 2,324 resuts

One persons review of the initial harvard case.

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And a recent personal favorite (thanks Bob) where the most promising research is being done.

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The greatest and most effective trials of all are being done on an ongoing basis by the layman and the medical establishment is watching closely.  Thats you, I and and all of us who suffer. One of the only patient led non formalized effective slightly accidental research programs in the world.
Clusterheadaches.com  and  Clusterbusters.com
The go to source for statistical and anecdotal information.

There is hope.

Thanks Cat that would be great, keep me posted.