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Hey all. I recently had to go in for an upper and power scope at the hospital. I informed the anesthesiologist of my clusters and requested O2 at 15lpm with a non-rebreather mask available when I woke up. They had been informed that if I sat up and held my head do not give me narcotics or force me to lie down. Post procedure, I woke with a hit, sat straight up and saw a lovely tank of O2 not 10 feet away. The nurse was at my side with the mask and told me it was set at 15lpm as requested. About five minutes later I stuck a thumb in the air -my signal to drop to .5lpm. They were awesome. Post scope input was they had to put me completely under as I was thrashing around and they had to use full anesthesia, not sedation. Hmmm. Well, when I returned for surgery, it was a different anesthesiologist. I gave him the run down. He checked the records from the scope and yep, got the picture. I told him that opioids would not help at all. 'I see that!'. O2 was waiting for me. They were smart and attentive!!! So, perhaps this might help someone facing a procedure or surgery. They really don't understand that mega pain meds won't help! A little explanation went a long way for me and might for you. ATB

Here's info about the D3 regimen: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 A very large percentage of folks with CH use this as a preventive -- generally good for you, no significant side effects except in a handful of cases (where those side effects might or might not actually be related to the regimen). Don't be easily deterred about oxygen. It aborts attacks as fast or faster than your nasal triptan -- and no side effects. Find out, and fight if necessary. You can also set up your own O2 system using welding oxygen, which many people with CH do. One question will be whether your attacks return after (or as) you wind down the pred. As your doctor said, usually it's a bridge to give the verapamil time to take hold. Sometimes it ends the cycle, but not always. It seems a little odd to me to stay on the verap for six months, but you say he's knowledgeable. (There are people whose verap dosage during a cycle goes up to 960 mg/day or more.) Many people think that the non-extended release verap works better.

To reply to Spiny; I also take verapamil and have low blood pressure but I take effortil (Etilefrine) with every dose, keeping my pressure to normal, otherwise I could not take it. If you can, use ginger, celery, carrots and cucumber to make a smoothy or drink alot of ginger ale. I use the combo of Red Bull, caffeine shots and ginger if I maxed out the triptans for both chronic cluster and migrains. Also thanks @spiny for the tips on the O2 usage. It's very helpful ! Good luck faithd, I don't know anyone who understands or has this pain either, I feel your pain. This forum is the only place I can turn to. If you have more questions or feel alone in your struggle, we are here for you.

Welcome! Sorry you need to be here though. Nocturnal hits suck. In my opinion because you don't realize they are there until they jack up a good bit. As a 'nocturnal' myself, I will address that. Grab some caffeine as you head for the O2 and down it fast. Cold seems to work best. I use iced coffee or V8 Energy. The shots make me vomit. O2 will kill a hit, but not prevent the next one coming behind it. If you are getting hit every two hours at night, you will kill the first, fall asleep, get the next one on time. Your O2 will not prevent the next one. Are you hyperventilating on the O2? Do that till the pain recedes. Then stay on for another 5 minutes with a normal breathing rate and the O2 turned down to support that. Many people think that if they get another hit in an hour or two, the O2 is not working. Well, it is. It is an abortive, not a preventative. So, the next hit is going to come! Sleep in a recliner partially reclined but with your head above your heart. It helps a lot and you will wake sooner if you get another hit. Pile pillows around until you are comfy and secure. Start hyperventilating when you first get up. It really helps even with just plain air. And you will use less O2 when you get there. Eat regular if possible and schedule your sleep. Naps can bring on a hit and having screwy times to go to bed is just aggravating the dragon. Set a time to sleep and a time to get up. Stick to it. Really tough with night time hits, but very helpful. You do not mention a preventative, are you on one? Verapamil perhaps? That is normally the best one to take and the first one you should try. It is a cheap med to take. With CH, you likely will need a pretty high dose. Likely he will start you with 240 a day and step up from there. Insist on the Short Acting vs the Extended Release- it works much better for us. And you can tailor when you take your pills based on when you get your hits. At three times a day, I took my first one at noon, then dinner, then late at bedtime. Just keep them at least 4 hours apart. Unless you have other health issues that get in the way or have low blood pressure, you will up your dose till you get relief. If you get hit with no O2 around, then grab some caffeine while running really hot water in the tub. I get in and let it fill with water as hot as I can stand it. Often I have a full normal tub full by the time I get out. I just keep adding more hot as it cools off. ATB and I hope this helps a bit. Hugs!!!