Well believe it or not I finally found a doctor that knew what to use to treat me.
So this is my third cycle of SUNCT first was a year than a year off second lasted two years then about fourteen months off and this one started three years ago and is still going. For those who do not know me or SUNCT it is a close cousin of CH comes in cycle effects one side of the head around the eye, I do not get a severe attacks as you guys but the pain is 24 hours a day and after three years I am luck I have not put a bullet in my head for sure. So a couple months back I was at work and an email came through about a doctor giving a woman’s health seminar and as I was about to delete it being a guy I noticed the guy giving it was the director of the Stanford Headache Clinic, now I have worked here at Stanford for six years and we have never had a headache clinic surprisingly being a teaching hospital and university, anyway I start emailing him and telling him about my SUNCT and finally got an appointment for 12/21the man was anti pain medication big time and was giving me a hard time but I told him make the pain go away and I will stop taking pain medication. He told me he was treating a woman that lives in SoCal with SUNCT and she comes up to be treated, that is a first I have only found four others on the Internet that have this so a doctor that not only know what it is but that is treating someone was great to hear. He seemed confident he could help me and had me start taking a new antipsychotic medication called Olanzapine and the next four days I had 0 pain first time in three years and since then only breakthrough headaches the longest one lasted four hours but not a bad one and the rest are in minutes. What a Christmas present and at the best possible time, three days before I was at my parents to celebrate Christmas with all my family and my father being the puts that he is got in my face and triggered a complete breakdown the like I have never had before and at one point when I was outside losing it I knew if someone handed me a loaded gun I would not have hesitated to use it, scares me to know I was that far gone, I just was in so much mental pane that ending it once and for all seemed to be a good idea, sure glad I did not have a gun then three days later I see the new doctor and he makes the pain go away, I still feel the lesser symptoms and the breakthrough headaches but it is night and day from what I was feeling. I have no idea if this would work for CH or not but might be worth checking with your doctor since it is a new medication or at least so I hear. PF wishes to you all and a Happy new year.

Matt

Matt that's GREAT news, congrats brother.

Joe

So happy you have found some relief Matt.

Excellent!!!   

That's great news Matt

Never heard of SUNCT turning into  CH but who knows there are only 20 of us who are documented cases of SUNCT, when the doc looked at me and started saying what was normal for a SUNCT sufferer I laughed and he asked why, I looked him in the face and said how can you say anything is normal for SUNCT when there are so few documented cases, he laughed and just said good point. Lol
Well all I know is this is my third time still do not know if I will get my year off or if I am chronic now but dam glad I have a weapon that seems to work and hope it continues to work. I have already titrated down on my Fentanyl patches and was able to stop them all together last week and only take a few pain pills and to keep from having withdrawals but hope to get Suboxone soon form my doctor so I can stop them as well and not have to take anything, the breakthroughs are not bad enough nor do they last long enough to need anything strong. Hope you all find some PF time and Wonder Woman talk to your doctor about trying what I am on or the Ketamine infusion as well maybe one will work if you pain is not going all the way away with what you are using now, after three years of constant pain to be almost pain free makes me want to climb on the roof and scream I am that happy.

Saw the doctor yesterday and got the new script for Suboxone so picking it up today and hope to be able to stop all the pain medication. The headaches are still at bay and only get breakthroughs so I am still very happy so was my doctor after this cycle lasting over three years without a break.