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Thanks everyone! Jon019, salmon, really? Things are progressing. My husband had a sphenopalatine ganglion nerve block on Friday, and he's only had one minor CH instance since then. He's also gone on Depakote and upped his Vitamin D intake. Seeing his neurologist at least once a week, and scheduled for a ketamine infusion in July. It's a really low time for him, and I'm doing my best to keep our hopes up. We have to figure this out and learn how to keep going.

Hey John, Oxygen therapy is just an abortive... not a preventative... That said you should get at least an hour or more relief after an abort with oxygen therapy... Try hyperventilating with room air for 30 seconds breathing at forced vital capacity tidal volumes, i.e., exhaling with an abdominal crunch at the end of each exhale cycle until your exhaled breath makes a wheezing sound then inhale rapidly and fully then repeat ten times (~30 seconds), then inhale a lungful of 100% oxygen and hold it for 30 seconds. Repeat this entire sequence until the CH pain is completely gone. If you want a lasting pain free existence, you need to start the anti-inflammatory regimen with 10,000 IU/day vitamin D3 plus Omega-3 fish Oil and the vitamin D3 cofactors. You can download the latest version of the anti-inflammatory regimen CH preventative treatment protocol at the following link. Be sure to share a copy with your PCP or neurologist. That way you're both singing from the same sheet music when you ask for the suggested lab test of your serum 25(OH)D, total calcium and PTH (Parethyroid Hormone). http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 You can also scan the following QR code with your smart phone and it will download a pdf copy of the treatment protocol to your phone as a ready reference. If you don't have the QR Code Reader App, it's free and It takes less than 10 seconds to download and install. Take care and please keep us posted. V/R, Batch

Have flown multiple times with epi-pen and zomig ns (I swear it looks like a bullet!) with nary a question. I'd bring the script along just to be sure. I have been stopped several times...once for an O2 regulator and mask...the other time for a can of salmon!? Best Jon

Unfortunately, yes, flying can often trigger an attack. I wouldn't think that a sumatriptan injector would be refused. It's clearly medical, and it's below the limit for liquids. Maybe others have had a different experience. Once they get past security, a lot of folks pick up a 5-Hour Energy or some other energy beverage to bring with them. Even knowing that it's possible that they will suffer an attack on the way to the conference or home from it, a lot of people come back to the conference year after year. That's how valuable the information is -- and, just as importantly if not more importantly, how valuable the experience is. (Denny's suggestion that you consider growing your own medicine is important to consider. There a cases where one busting agent might not work, but another one does. Having an alternative is a good thing.)

Hi Anita! I see Chf has you lined out on LSA busts so I'll address vitamin M. Although a few folks are able to source and purchase shrooms, the vast majority of us have had to take up mycology and learn how to grow our own. It's a fairly easy learning curve and not too terribly expensive to get set up but it does take a minimum of between 35 and 42 days to realise the "fruit of your labor". Just watch the youtube video series entitled " Let's grow mushrooms "......they'll demo everything you need to know......you out can source all needed supplies from Wally world for less than $50 with the exception of the brown rice flour, coarse grade vermiculite and a spore syringe. Whole foods or any health food store for the brf at approximately $5 for a 2# bag.....coarse grade vermiculite is only available in large 3 cu ft bags at commercial landscape supply stores in my area and costs around $35......Spore syringes are available from Spore Works and run around $20.....so between $100 & $125 for a batch of "pain free livin"!! Dallas Denny

Well, for starters... I cope with the thoughts by knowing that I have a good support system, and a lot of people who love and would miss me if I were gone... And that usually prevents me from doing anything drastic. Knowing that, and that I am needed helps. Then there's the fact that the attack -will- end eventually... I might have another one later, but the one I'm in, will stop. Knowing that also helps. But mostly knowing I am loved, wanted, and cared for is the best thing to help keep me from doing anything drastic. It helps anchor me. Knowing I have unfinished work on this Earth. I'm not sure if that's what you're looking for... But the fact I am useful keeps me here. So your love and support for your husband matters, so much, more than you even know. The thoughts do come, sometimes just as a "I'd do anything to stop this.". It just kind of happens. But knowing that we have our supporters is what keeps us going. The fact that you're trying to help him, will also help him cope, too. <3

CHFather, thank you--I always appreciate reading your responses on these boards. I'm sending him the D3 regimen info now--he's probably not yet able to read it through, since he's in a bad cluster, but I'll scan it and see if I can provide him with the highlights. He's open to busting, and if I can get him to read the files I'd consider that a huge win. I don't know the exact levels of his meds, but he's on Verapamil with the Sumatriptan injections (which we've learned to split, thanks to this site, and that's been very helpful), and currently on Prednisone to try and taper this particular cluster. He may be on other meds, I'm not sure--he works closely with his doctor to monitor them as we're both aware that taking a large amount of pharmaceuticals can be harmful in the long run. It is not the way we want to go, but right now we are truly trying as much as we can. Despite my continued pushing to use O2, he is convinced that it does not work for him. We have two tanks and a nonrebreather mask, and we have tried before, but he will no longer use it. It's extraordinarily frustrating to me, as I think he could learn a lot about the proper use and technique of O2 to potentially get relief, but he won't try it. I wish I could have another CH meet up with him to discuss the benefits. Understandably, he doesn't want to get his hopes up trying something that may not work; but it's very difficult for me to sit here while he stubbornly refuses to try it again. However...it's his pain, and I'm here for support--not criticism. He is doing his best to live through this agony, and I admire him and love him. My heart breaks to watch him go through this, but whatever I can do to help him, I'll do. I'll gather as much information as I can but in the end, all I can do is love him and lift him up however I can. I appreciate this site and your support. It's really helping at this particular low time.

Anita, will you say what meds he's taking, and at what levels? He has oxygen? Is he doing the vitamin D3 regimen, which you can read about here: https://clusterbusters.org/forums/topic/1308-d3-regimen/ The D3 regimen has been very, very helpful for a lot of people. And is he willing to try busting (ending cycles and preventing new ones using psychedelic substances, potentially at levels that cause no psychedelic effects at all)? Many people have come to this site feeling that they were out of options, and busting has given them their lives back. You can read about busting in the numbered files in the ClusterBuster Files section.

I like this Jon, thanks very much !