BeastBuster Posted March 27, 2013 Share Posted March 27, 2013 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. Quote Link to comment Share on other sites More sharing options...
b.g. Posted March 27, 2013 Share Posted March 27, 2013 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. Quote Link to comment Share on other sites More sharing options...
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