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Hello everyone, I found this site a few weeks ago and have been very much appreciating all the wonderful information and advice contained within. It's also very nice to know there is a community of people that have been going through the same types of things. Much love to you all! After two trips to the emergency room two nights in a row about 5 weeks ago, I was referred to a neurologist. It took about a month to get the appointment and I was prescribed sumatriptan injections (6mg/0.5ml per injection), oxygen and I was switched back to verapamil 120/mg 3x per day after having been on propranolol a while and verapamil 80mg 3x per day before that by my nurse practitioner. Anyway, I'm trying to get myself set up with both. I'm normally pretty good at finding information, but I can't seem to find any reference to either of these questions. I'm willing to bet they have been answered, but my head right now just won't let me investigate and much as normal. Sumatriptan When I finally got enough money to get a partial fill of my prescription, I was expecting to get the auto-injector form like what was on my GoodRX coupon. When I got home, I found that I had simply received 5 vials each containing 0.5ml. Apparently enough for one dose each. And that was $122.00 haha. Wow. (No insurance, but the coupon sure helped!) I've seen on this site where most people say that 3mg is enough for an injection treatment, so I have two questions: 1) Is it OK to use each vial for two doses? 2) Is there a certain size/gauge syringe that I need to be looking for? Tubing size for welding (CGA-540) regulator adapter I have ordered the Cluster O2 kit from clusterheadaches.com. However, I don't see in the description what the inside diameter of the tubing is. I'm going to guess 1/4"? I'm going the welding oxygen tank route, because even here in Dallas, TX I'm having a hard time finding large medical oxygen tanks. I can get what's probably an M size tank for $250 with $25 refills. But I need to know what size adapter I need to get so that the tubing will connect to the regulator. Does this one look OK? (Dixon OA61 Oxygen Hose Brass Fitting, Coupler, 9/16"-18 UNF Right Hand Female, 1/4" Hose ID Barbed ) https://www.amazon.com/Dixon-OA61-Oxygen-Fitting-Coupler/dp/B007D5KS2A/ The regulator I am looking at is this one (Victor Technologies 0781-9400 G250-150-540 Medium Duty Single Stage Oxygen Regulator, 150 psig Delivery Range, CGA 540 Inlet Connection) https://www.amazon.com/Technologies-0781-9400-G250-150-540-Regulator-Connection/dp/B00BZFB2TC/ Thanks! Thanks to everyone for all the long-distance support even when you didn't know it. Super glad I found this site. Best regards, Terry
Hi all, my name is Steve and I have episodic CH's for the last 7 years. I was first misdiagnosed by an ENT and then a neurologist, then properly diagnosed by the same neurologist after a follow-up visit with CT scan. Got put on a few meds that may have worked, but considering the way CH's vary from attack to attack, I'm not sure if they really did helped. I typically get my once a year cycle in mid-to-late-November, but for some reason they came on in early August this year. Without insurance, I decided to try out MM and took 3 doses, spread out at 4-5 days in between. I still got attacks in between doses, but I'm hoping for the best after this last one (if I'm getting the terminology right, the attacks may have been "slapbacks"... I guess I'll find out soon enough if the third dose busted me out). I've learned so much from the ClusterBuster site and also from you all here on the forums, and I'm determined to get an oxygen tank. I'm in a bit of a standstill though, because I don't have insurance and so everything will have to come out of pocket for me. Neuro visit to get the script will cost $250 and after that, I'm not sure how much it'll be for the tank, refills, etc. It seems like there's overwhelming support for going the welder's oxygen route. I do have concerns here though. For those of you with long-term experience with welder's oxygen, have you ever had any adverse effects? My concern is not with the purity of the O2 (as I've read here that it's the same level of purity at medical-grade), but the cleanliness of the tanks. I'm just worried that I'll be putting unknowns into my system that is already fragile. I've already read every bit of welding info here on the message boards and I haven't read anything negative. But, like looking at the reviews on Amazon, I tend to want to hear both sides. I want to not only hear about everyone's great 5-star experiences, but also the 1-star reviews. Has anyone had any bad experiences with welder's oxygen? I'd really like to hear from you. Thanks and hope you are all pain free today! Steve