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  1. I'd like to add my bit to the "extending Imitrex" link. My neurologist always wants to prescribe the auto-injector shots. Instead, I ask for just the generic sumatriptan vials. They come in packs of 5. With a GoodRx coupon (if you don't have insurance) it should run less than $60. Sometimes at CVS, I actually get two boxes. So, that's 30 doses. You will also need to buy some 10-packs of insulin syringes. I get the BD brand, 31 gauge, 50 unit size. They keep them behind the counter and should be anywhere from $3-$5 per bag. Diabetics will be familiar with the procedure, but in case you've never done your own injections here's how you do it: Each syringe will come with a bit of air in it. You stick the needle into the vial then push the plunger of the syringe into the vial. This puts a bit of pressure into the vial so it's easier to correctly get the dosage you want. Slowly and carefully pull the plunger until the syringe is filled to the 20 unit mark. That's 2ml, and one third of a "dose". Swab the injection area with rubbing alcohol (I do this on my belly because that's pretty much the only place I have body fat). Insert the needle sort of at a 45 degree angle or so under the skin and into the fat, but not deep enough to hit any other tissue. (This is where "subcutaneous" comes from.) Slowly press the plunger in with steady pressure. You might get some resistance from the syringe at first, but if you go too fast some of the medicine will leak back out of the injection site and you won't quite get the full 1/3 dose. Remove syringe and wipe site again. A few minutes later (generally 7-12 for me) you have relief! At a much lower cost haha. Since I am not a drug user or share syringes, I use each 2 or 3 times. More than that and they are too dull to use. This helps prevent the tolerance and rebound effect. You get 6 treatments instead of 2 each day. But above all else, do whatever it takes to get oxygen. I'm a "welder" - I get 200 liter tanks for about $30 with exchange from AirGas. They last me 3 to 7 days depending on how busy my trigeminal nerve decides to be. I don't tell them what I'm using it for and they don't ask. It comes with a CGA 540 valve connector and you can buy your own regulator. I very highly recommend the O2ptimask setup mentioned. I've had mine for 4 years I guess. It is extremely well made.
  2. I'm wondering if something like this would be more precise... https://www.amazon.com/dp/B0C4B19ZMS/?th=1
  3. @spinyI did a tight electrical tape wrap on the supply side of the valve I have. It worked wonderfully. No air leaks after sticking in a bowl of water! Now the only problem is that the bowl of water revealed that the valve itself is not up to snuff when it comes to the air pressure Here are some images of what my setup is. I have a 200 liter oxygen tank I get from AirGas and exchange on an account as needed. $40 a pop. A set of vise grips to cut off the flow (which needs to be perfectly centered over the hose, because that hose is really tough and will leak even with that) and the aquarium valve thing. The valve with the electrical tape wrap with a spring clamp. Plus the non-rebreather mask I ordered a few years back. It works really well, except it would be nice to not have to move across the room several times a night to open and close the valve on the O2 tank.
  4. Having been an electrician apprentice for 4 years (and a sort of redneck), I should have thought of the tape lol. In fact, just a few minutes ago I was thinking about what I could wrap around the tubing to make it thicker. Rubber bands? Nah, that black tape sounds better. Yes, I was trying to use one of the screw hose clamps, with the slotted, 1/4" hex head. Getting it tight resulted in a not-round seal. I spent a whole 40 cents on a 3/8" inside diameter spring clamp a couple of days ago, but it is still too big. I think the tape is a great idea. I'll give it a whirl and let you know!
  5. I think it's going to work out. The 1/4"-6mm screw-type hose clamps won't work, because when tightened enough the clamp does not make a perfect seal around the tubing because of the way the clamp is constructed. I'm to look into some same size spring clamps to see if that works, hopefully from a local hardware store so I don't have to buy bulk. Otherwise the whole setup is working fairly well. I'm using vise grips to completely shut off the flow until the spring clamps come in. The inline ball valve does allow you to fine tune the flow so you get just what you need instead of messing with the pressure regulator coming from your O2 tank. I'm using a regulator like this, but it seems it's not available now. I'm sure there are similar items that allow for medical oxygen tubing to be attached.
  6. Since I am able to regulate the pressure coming out of the O2 tank, this looks like it will work. Since the valves are for water, even with a super tight hose connection over the ribs, there is still a bit of a leak. I'm going to find some super small hose clamps to see if that will solve the leak on the input side when the valve is closed. Output side does not need any clamps since the back pressure is minimal as it's going into my lungs. Thanks again. I'll post another update.
  7. Thanks for the tip. The regulator I am using allows me to reduce the pressure coming from the O2 tank! It has two gauges: one for input pressure from the tank, and one for output pressure, to the tubing in this case. So even if I open the tank valve all the way, the regulator will keep the pressure at a usable limit.
  8. Thanks for the brilliant brainstorming. Sounds like just what I'm looking for! I've ordered and will see what happens. I did not think of irrigation or aquarium products. I also very much appreciate your cautionary comments. In this case, the twist valve you shared would be next to me during the hours at night when I am awake and my wife is asleep. When I am asleep the main valve on the O2 cylinder will be fully closed. Until needed when I am in the bedroom, of course. Thank you again for your time and comments. They are both very much appreciated.
  9. Hello! I'm looking for a simple flow control (and on/off) valve for the standard oxygen tubing setup. I purchased the recommended non-rebreather mask setup a while back, and I'm also using a 200 liter oxygen tank from AirGas. Not medical, but it works just as well. And then an inexpensive pressure valve from Amazon. If I weren't so tired, I'd go ahead and provide links for each, but they each have been recommended throughout these forums. The reason I'm asking is because I have to stick the oxygen tank in my bedroom. I work at night from home. If I'm having bad days (nights), then that means I'm struggling to get oxygen flow going there in the bedroom. And I'm waking up my wife multiple times when she already has problems sleeping. I have way more than enough tubing to run the mask into the living room where I won't bother her at night. I've searched so many times over the last year for a simple, twist-valve something or other that will allow me to turn on and regulate the oxygen flow via the tubing without having to be at the tank and shutting it on or off. Most of what I've seen are really expensive and have pressure gauges on them. So, in other words, a simple little faucet that goes inline with the oxygen tubing that I can turn on when needed, maybe adjust the flow a bit, then turn off when done. I don't care about the pressure.
  10. Thanks for the tips @Freud! I really appreciate the effort even when you are mid hit. That means a lot. Take care of yourself! I just opened the AGPteck regulator I mentioned above. It does come with the correct size 1/4" barbed connector for the ClusterO2 kit I received a couple of days ago. I will take a look at what you shared and let y'all know what my further thoughts are. I've been out the last couple of days with a toothache from a split. Glad I finally got it pulled today! Hopefully that will lessen the toothaches that come with the attacks.
  11. Hi folks! I wanted to throw a few thoughts out to both those who have used this site for many years, and to those who might be joining very recently (such as myself). I have a background in group moderation, search engine optimization, web design, and many other things that will just sound egotistical if I share haha. Egotism is anathema to me. My point isn't to brag or draw attention to myself. My point is to draw attention to this wonderful site, and all the help that it can give to anyone who is struggling with cluster headaches while looking for information that they might even not know what to search for. And this relates to search engines such as Google, Bing, Duck Duck Go (and yes, even Yahoo). So, here goes a list of what I would do if I had a say in what individuals might want to consider when posting in regards to how it helps new people. In other words, don't assume anyone knows what you are talking about! 1) Use key words or abbreviations only after explaining the full concept. - In any forum or group, people who have been around a while tend to start using abbreviations, code words, etc. that confuse someone new to the topic. Examples might include "beast", "trip", and many other things that a lot of you are already aware of. It's so easy to do, I totally get it. But, it helps only those who already know what's going on - not those who are struggling to find a resource for the first time. - If someone new is trying to research information, it's a detrimental struggle to try to decipher the codes and key words. - Many of us (and our loved ones) are speed-reading, trying to garner reliable information when this kind of thing first hits our loved ones. If your conversation looks like a bunch of code, and does not contain a bunch of useful information simply yet explicitly explained (no matter how many times you have repeated it) it comes across as a clique (a closed group) instead of a universal resource. - Plus, Google (etc) is not able to process those as far as search results based on relevant content. 2) If you are talking about a product, always provide links and a full product description when possible. And, provide context as to how the product relates to your experience. - We might say "regulator" or "syringe". Be sure to explain (or make sure that the rest of the content explains) what specifically you are talking about. Is it a welding oxygen tank regulator or a medical oxygen tank regulator? Will one work with the other? - You might not (probably will not) know all the aspects of all the options asked about... but, your contribution to the conversation will help others in the future try to collate the info! 3) If you are aware of a time limit on a sale price, or limited stock, or a potentially discontinued item, please state as such. - Not much to explain here, I think. 4) No complaints about this site at all! - I have found clusterbusters.org to be one of the most useful sites I have ever experienced in my 51 years of being alive. Kudos to @CHfather and many others for making this a truly remarkable resource. - My goal is simply to help others helps others with the information I have in my head (when it's not being attacked haha). Cheers to you all, and best wishes in your efforts to conquer. <3 Terry p.s. I have more guidance, if you will, but ultimately the personality of the group as a whole is what will shine. I also want to share my other, newfound experiences regarding needles and masks! Oh my...
  12. Hey @johncluster, I will certainly keep this post updated (as appropriate), but I do need to let y'all know that I went with a different regulator than one of the two mentioned in this post. It's the AGPtek Welding Gas Welder Oxygen Regulator CGA 540 for victor torch cutting kits https://www.amazon.com/gp/product/B00JJGL7LW/ I did that for a couple of reasons (which hopefully I won't regret haha) The price Availability of Prime delivery (I've already waited so long for even just a neurologist appointment). Others would have been at least a week in delivery. The description does not specify the barbed nipple size, but I'm assuming (hoping) it will be 1/4" because a lot of oxyacetylene hoses are also 1/4". Since I am a freelance work-at-home type of person, I don't have PTO or even insurance, so since I've not worked in almost 3 months I'm pretty low in my nest egg. We'll see how it goes, and as I said, I will keep this post updated with my results. Even if only one other "new" person reads this, it will be worth taking the time to present information that might not be available somewhere else. Plus, Google does actually crawl these posts for search engine results.
  13. Thanks so much for all the tips! I'm looking at the 2 suggested regulators right now. @jon019 I guess I am fortunate! It appears that I can just use the insulin syringes and draw out exactly what I want the good old-fashioned way without having to tear anything apart like I've seen in other posts. Surely the Walmart where I got the vials will also have the syringes. This has been so helpful. I very much appreciate all the great feedback.
  14. By the way, this is what kind of vials I received, if it helps any.
  15. 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
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