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About Kristofer

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  1. Kristofer

    Sound Triggers - Young Kids

    Man I am glad you said something about sound. I have had Chronic Cluster Headaches for twenty years and back then not too many doctors or headaches sufferers knew what to call them or even understand them. Sound without a doubt can trigger my headaches to start or even get worse. But also stress and anxiety for me can make them worse. Sound is a very big trigger for me. I no longer go to concerts, listen to loud music, even going to my church and singing can start them. I can't imagine having kids! I literally use ear plugs made for shooting guns to help me socially. Thanks for sharing, I guess I am not the only one. LOL You have a long road ahead to learn about this life changing, painful disease. There are many opinions and some arguments among the cluster headache community on what to do, what to take and who to see. I believe you have a responsibility now to learn what they are, what kind and even educate medical professionals if need be along with your family and friends. Learn, learn learn become the expert! This site is a great place to start. I really feel for you and I will say a prayer for you and your family. If you have any questions I would be happy to listen. In twenty years with endless funds I have had many opportunities to see the best of the best. I have tried some dumb things I regret trying or even doing. Although with time comes some wisdom. With care search, learn and listen. Kris
  2. Hi I am forty eight, male and have intractable chronic cluster headaches for twenty years. I have seen the best specialists in the world and ended up having three full trigeminal rhizotomies that did give me three years of no pain but then ch returned. I have been on the maximum dose of opiates that the FDA will allow for over eight years now. This has managed my pain moderately but how long can I do this. I am on other meds as well prescribed by my neurologist who found gammacore for me. I bought it and have been using it for one week now learning the best position for the best results. I use it three times in three minuter intervals at 40. I was surprised that it did change the morphology of the pain and brings it down from an 8 to a 3. I then am able to lay down and fall asleep for a few hours before my headaches return. I use it four times a day and I just don't know if I can justify the $600 dollars a month. I am disabled. Electracore did say it worked 20% of the time in cch. I believe it could replace my use of Actique to break the pain that lasts for over 12 hours Is there anyone out there that has CCH and is using the gammacore. Thanks for the board.