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bnb111

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  1. Yes, he's done everything except the vitamin regimen. We didn't want to do that because we believe the verapamil has finally kicked in and allowing the oxygen to work so we didn't want to throw something else in the mix. We have both a concentrator (bedroom) and tanks (LR and car). The shots, he needs the 6mg, lesser amounts don't work for him but lucky for us we had them stockpiled, and the neurologist has filed papers for the override. My post was really just to thank you all, let you know why i hadn't responded, basically just to provide an update and let you all know that I'm always thinking of you all and praying!
  2. Thank you so much everyone, I know this post is coming rather late to the party but it's been tough at the house for a couple of weeks. Every time he comes off the steroids they are back with a vengeance! He's doing everything possible to get through these. Good news is, the Verapamil finally seems to be kicking in and allowing the O2 to work. Tomorrow (2/9/16) is the follow up with his neurologist and on Friday (2/10/16) that is actually his eight week anniversary of these being back in our life! I am hoping, praying, lighting candles, offering whatever I have to offer to please let this be something, for someone to please come and turn off the light switch to end this cluster. While I'm hopeful, I'm certainly not stupid and know it's just a shot in the dark but that's really all I have. I swear to you guys, I don't know how you do this without rest, how in God's name can he even be still standing upright? I'm full of questions, and what seems to work for him one day doesn't work the next, I don't know how you all do this!?!?!? He's running on barely any sleep, going to work every day and performing! On top of all that he's a drummer, and not just any drummer but the best drummer in Maryland, I know you think I'm cocky but there's an actual award!! LOL It must be true that God only gives his toughest battles to his strongest soldiers because you all amaze me! Please know that I pray for every one of you every night, I pray for you every morning, I pray for you every week at church, you all are never far from my thoughts! I just want you all to experience relief and I'm not giving up or giving in. I'm looking forward to Headache on the Hill and I will scream from the mountaintops to anyone that will listen, we need a cure, we need recognition, we need help! Much love and big hugs to all of you sufferers and supporters! Brooke
  3. Thanks everyone, I appreciate your feedback. In reviewing my log of his pain and headaches it's definitely the steroids that are keeping them at bay. He was finally able to sleep through the night last night because of the 60mg of prednisone. Once we start to reduce that 60mg they're back and worse. CHfather - he is on verapamil as well, I accidentally left that off
  4. Hi, I'm not a sufferer of these horrific things rather a wife to a cluster head and I have a couple of questions. My husband started with these when he was 40, he's now 53. He was in remission since 2013 but they are now back. I can't believe with all the research I've done that I was not aware of RED WINE being a trigger so I blame myself fully for this reoccurrence. It was 12/9/16, my companies Christmas party, and we decided that we would drink this wonderful red wine, can't even remember the stinking name now but I hate it! Anyway, the next morning while driving home, it happened, I heard his voice change and I looked over and there he was, the devil in all his glory! I couldn't even believe it!!! My husband was able to work thru that one while driving, no O2, no shot, nothing, I don't know how he did it but he did. For the next two weeks there was nothing, he was convinced it was a fluke and then Christmas came and the cookies and the sweets and the chocolate, and then he took a vacation between Christmas and New Years. Were not sure which one of them pushed him over the edge but it did and he's fully engulfed now! Seen his neuro on 1/6/17; gave him back his RX for O2, more imitrex and of course prednisone. Unfortunately we cannot break this cluster. He was doing great while on the steroids but as they started to decrease, his headaches increased. I'm guessing that's my question, have any of you tried prolonged usage of steroids? If so, did this help you? Did you suffer side effects? I just don't know what to do for him and I feel as if I was the cause of this bout, I cannot believe I didn't know about the red wine and did this to him, I just feel terrible and am looking for anything I can do to help him! ps - not really a newbie but cannot remember our signon from years ago!! Thanks!
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