massphotoman

As a patient of Dr. McGeeny I would have loved to have been there to talk to everybody about my treatments. I would also like to be able to get a video of his talk to be able to see other things that I am sure we have not had time to go into in our office visits. Please feel free to PM me with any questions or contact me on Facebook. I am there a lot more then here. I love all of the support we have from each other now. PFW

As I am now seeing Dr. Mcgeeney, he told me that I have to find a way to get to this meeting. I am living on disability now so I will have to try to start saving now. After seeing the posts above I see that I will not be able to bring my guns with me. I think I would feel much safer there with them. I will do everything that I can to make it there. My father lives in Indianapolis, so maybe I can stay with him and drive up from there.

MoxieGirl I will let you know what results I get, if I can get a hold of anything. Nothing has helped so far.

Wow, This post sounds so much like me except I am 43. I live in Marlborough MA. I have SUNCT and have been seen by Drs at Mass General, U-mass, and many more. I got an implant put in a couple of years ago in Peabody that has helped me a lot but not cured me. I still live in pain every day. I have a great Dr. at U-mass right now by the name of Paula Ravin. She was a headache specialist at NIH. I was first diagnosed by David Biondi at Mass General. He told me that he thought I had CH. But after trying so many drugs that is screwed my memory up and getting my implant they decided that I actually had SUNCT/CDH. They are idiopathic/asymptomatic. which basically means that they don't know what causes them and they don't know of anything that will help them. I just got my second round of Botox three weeks ago. It is not helping at all. I am still on more meds then I want to be on. My stomach is messed up very bad. It does not even work anymore and it hurts all of the time. I pass kidney stones all of the time. I have had a heart attack. There are so many things wrong with me now that I don't know what to do.

Are most of the threads on here mainly guided towards CH or do they cover other TAC headaches? I suffer from SUNCT. I have tried the Clusterbuster cure myself four times recently and it has not helped at all. I am going to increase the amount a lot one more time. I have tried so many things over the years that I am sick of pills. I have an implant in my head already. I was one of the group of five that was the test group for St. Judes and ANS for a supraorbital neurostimulator. It got me out of bed and part way back to a normal life but I still live in pain every day. I need to know where else I can look for help on this site. There was a story written about me and the support that my wife has given me over the years in a local newspaper. If anybody wants the link I will send it to you. Thank you for any suggestions or help of any kind.