It’s been a while since I have been on the site but some of you may remember me.
I have SUNCT not CH but very similar to CH, I have been dealing with it for over ten years now first cycle lasted a year with about a year off then a two year cycle with about 14 months off and then a four year cycle that just about put me over the edge. Christmas of 2011 was really bad and about at the four year mark, I don’t think I have ever been that depressed and was scared at the time. I saw a new doctor here at Stanford University where I work and he put me on Olanzapine and this was about a week before Christmas, well a couple days before Christmas the pain just stopped from being 24 hours a day and lasted a full week and it was like a Christmas miracle to say the least. The pain slowly came back but not 24 hours a day and far less painful and after a couple months stopped all together now not sure if that was just the cycle ending or if the Olanzapine did this and did not care just was so glad to get the break. Now it has been about 14 months since it went in to remission and as normal started back up about two weeks ago, and once again the timing was perfect but in a bad way this time you see I was engaged to get married and my wedding day was April 28th and all I really wanted was for it to not come back until after my wedding and honeymoon but the monster must have known. Luckily it was not at full strength or 24 hours a day yet so even with SUNCT messing with me we had a beautiful wedding and a very nice Honeymoon in the eastern Caribbean on a ship. So now it is getting bad and is daily not yet 24 hours a day but I am sure that is coming as well, I already tried the Olanzapine for a week but need to give it another try, the stuff is nasty the first time I took it I took it as directed so twice a day but after a couple months when I tide to stop the withdrawals from the stuff was horrible to say the least so now I am very scared of getting a dependence on the stuff again. My new wife is an angle and is very supportive but I just wish this was not something we had to deal with and it is just not fare for her but she loves me not sure why but she does and is more than supportive and is by far the best person I have ever met and not sure I could make it without her and not just saying that. I am very scared right now four years was just about more than I could handle and each time this has come back the cycle has been much longer so I really am not sure how I am going to get through this if it turns out to last for years and maybe even not end at all. The pain normally is not extremely intense like you guys have to deal with but it is relentless and I wake with it and then go to bed with it only having it change in intensity, I am hoping that the olanzapine will help and keep it at least from being as bad as I know it can be and give me some breaks from the pain to help keep my sanity, I truly am afraid it could push me too far and even the love I have for my wife and family will not be enough to keep me here. Sorry for dumping on all of you but you are the only people that can even come close to understanding what I am going through and how far pain can push you, thanks for being here and thanks for listening.

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Hi Matt...so very sorry to hear that it's back  :'( :'( :'(...Please,"DO" remember,the big guy above,does not give us anything that we can't handle...back in jan. or feb...i was with my doc,and he mentioned to me that he has a couple of patients with sunct that he has put on a medication called "Lamictal" (sp.) that has stopped their attacks in their tracks...hopefully you have not tried this yet and perhaps it will work its magic on you...wishing nothing but the best for you...congrats on your marriage.....Lenny

Thanks and yes have been on Lamictal but no help on me, seem we all react different to medications with SUNCT. Love that saying that God would not give us anything we cannot handle, if it is true then he sure likes to see how far we can be pushed and has already had me at my limit once, just hope he does not test my limit again not sure I could do it again but that will be a couple years out so safe for now.

COngratulations on the wedding!

Hoping you rediscover some pain free time soon as we all know the value of that to ourselves and our loved ones.

Looks like the Olanzapine has worked again, had to take a full pill four days in a row and felt like a friggen zombie the entire time but the headaches are gone again just hope they stay gone for a month or two I hate feeling like a zombie but better than the pain for sure.