Phenibut and/or Alpha GPC

[BeastBuster]

Hey everyone, as always I am doing online research in regards to my clusters. I have been reading on Phenibut which apparently helps great with sleep and Anxiety/Depression. Well from my clusters I have def developed a lot of all of those, ha. Has anyone tried Phenibut or Alpha GPC and had any success?

Update on my first neuro visit: He is a highly sought Neuro in Charleston SC. So as I started talking to him, he said someone had been there yesterday with clusters and was talking about vit M. : ) That is a positive sign that people are hearing about us and finding help. Well he swore on all the methods i need to try(verap, topamax, indomethacin) so he prescribed me indomethacin and said it should stop my headaches right away. Well I started taking it and have seen no results. My headaches have actually been worse. I asked about intranasal ketamine and he shot that down as well. What a waste of my day and time.

[b.g.]

Hi BeastBuster,

     Yeah that sounds like some of the typical crap a lot of us have put up with.  When I first started having my attacks I saw my regular family doctor.  He didn't have any solid answers, so he referred me to "the best Neurologist in Ft. Wayne, IN".  A total waste.  He had no answers, so he referred me to the "best neurosurgeon in Northern Indiana" ...... another waste.

A couple of doctors later I finally got a referral and letter of recommendation to a Dr. at the Cleveland Clinic.  That's where I finally learned that I have CH.  Soon after i found this message board.

Here is a list of "clusterhead approved" doctors:

http://www.ouch-us.org/chgeneral/OUCH%20DOCS%20-%20US%2005-20-2012.pdf

If you have the ways/means I would try to see one of the docs on that list.  I can't speak personally for any of those Dr.'s except for my own ..... but I feel pretty confident he would prescribe me dinosaur sweat and unicorn poop if I asked him.