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

Zyprexa, or olanzapine, is not new. It was approved for the treatment of the manifestations of psychotic disorders on September 6, 1996, and has been used off label for some headache disorders for over a decade.

It went generic in 2011.

Glad you're finding some relief.

Matt that's GREAT news, congrats brother.

Joe

Great news Matt that you've finally got something that gives you relief.

So happy you have found some relief Matt.

Matt, that is the best news I've heard in quite a while!  I hope it keeps it up for you.

Jerry

Excellent!!!   :) :) :)

Matt, I am soooooo happy for you.  You deserve a break.

That's great news Matt :)

Matt
Makes me warm and fuzzy inside and smiley outside to hear that you are PF. !!!
I too have been diagnosed with SUNCT and have used a combination of Lamotrigine (Lamictal) and verapamil to control headaches, for several years. Lamotrigine is also used for epilepsy and more often bi polar symptoms.  If memory serves me correctly, I had been on this combination of meds since 2008. Occasional minor breakthroughs--mostly in the form of ghosts and then completely pf for over a year.
This is where a do the Happy Dance.
With neuro's blessing dropped the the lamictal about 4 months ago. Continued with the verapamil.  I use it with another med to control High Blood Pressure. 
Four days ago got that feeling behind the eye. Battling a bad bad cold--so tried to be positive and blame it on that. Well, you can guess---headaches were rolling steadily yesterday.
I am re-examing lifestyle changes.  I had been doing "batch' treatment, without knowing of it, for several years. Well, I did know I was taking the cal, omega and Vit D. for health reasons for the last several years. Also, daily RedBull. haha
Over the last 3 weeks I have stopped those. Silly reasons, busy busy, then sick. Dropped in to visit this site last nite. (its such an upper to know someone understands what I am experiencing. 8-) ) First message I picked was yours, second the 23 pages of the batch report. Needless, to say I got up out of my chair and went to take my cal omega and d.
I'll give it a try before I call the nuero.
When I read others on this board, I can only feel thankful that I have SUNCT instead of full blown clusters. I have a worry that my own little devil could morph into the big time one day. Have you ever heard of that happening? Hopefully, that is only my biiiigggg imagination at work.
I slept through the night without a ding and so far this morning pf.
Who knows?
Wonder Woman

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.
:)

Matt
More than likely you have read the description on SUNCT on wiki but if not I am including the link. Be sure and read the part pathophysiolgy that refers to prolactin levels

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Just a thought.
I have a tumor on my pituitary gland -a microprolactanoma. Small non malignant. I have been on a med for this condition for years. Recently I have been reducing this drug--with dr ok. We are checking prolactin levels. My levels have been rising in the last month. So have my headaches. Who knows? Maybe this is related for me. I definitely will be discussing this with my doc.

My prolactin levels have never been way past what is acceptable in the medical arena==but I do seem to react to the increase in prolactin.

So anyways  --you might think about having your prolactin levels checked. Its a blood test thats not expensive.

My drugs for preventing headaches are verapamil, bystolic, I do have high blood pressure so this works for me. I have used lamictal- an anti seizure drug.

Hope the olanzpine has kept you pain free and the other nasty stuff disappears from your medicine chest. :)

Wonder Woman

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.

Matt, I hope they never return!  All the best, my friend.

Jerry