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Saw in the video how demand valve can help conserve Oxygen. Cant figure where to buy it in US. Cant find anything online. Anyone bought it ?

Hello Soldiers, Oxygen is without a doubt number one when it comes to CH treatments. I have seen a number of posts from people newly diagnosed who have trouble getting oxygen, so i thought i might share my experience and resources. At the moment i do not have medical insurance. Im not sure if that plays a part in filling oxygen prescriptions but i know it makes a difference when finding a doctor. After meeting with their neurologist, I received a prescription for oxygen from Red Crescent Clinic of Tampa Bay. In addition to oxygen I was also given a prescription for verapamil and one or two other medications which i didn't bother with. This visit only cost me a $10 donation. I found the staff sympathetic and very willing to help. Once i found Florida Oxygen and Transfilling i was able to get my oxygen prescription filled the following day with no trouble at all (I believe they have a number of CH patients already) and once again was treated incredibly well by the owner, Jason. They have just about every size tank you could need. Their business card says they do deliveries and have 24 hour service. I have 4 size E tanks that i keep in my truck pretty much all the time. Hope someone finds this helpful. pf wishes to all

I just saw a Shark Tank episode for a company called "Boost Oxygen", which sells small canisters of 95% O2 for low cost. They got into the business by selling to skiers (high altitude). Has anyone tried these for CH?

Hey everyone -- I am just getting into a bad cycle, and unfortunately, have work travel to New Orleans from this Friday to next Thursday (Aug 9 - 16). Oxygen is my lifesaver, and I'm a little panicked trying to find an oxygen supply while I'm there. I'm hoping there is someone in the New Orleans area who could spare one M and one E tank for a week? Happy to pay, and I have my own regulator/masks/etc. I really just need an M tank for my hotel room and an E tank for on the go (so I have some nearby meetings if I start to get shadows). I don't want to put anyone out of oxygen that they need, but if someone has a spare I'd be eternally grateful. Thanks for reading, I'm really sort of desperate at this point.

Hi All After a lovely 2018 remission from cluster headaches due to pregnancy, I think I’m starting a new cycle. Shortly before my pregnancy -with great difficulty-I managed to get oxygen which was sitting in my garage ready. I have about a 95% success rate with the headache either going away straight away and not returning after 15 minutes; going away but coming back after the 15mins or going away after about 10 mins. I’m still in the early stages of the cycle but I’ve experienced 4 hits a night using oxygen alone and if I use a sumitriptan injection no other hit during the night (but sometimes in the morning) So far the hits are fairly low on the pain scale compared to what I’ve had before (perhaps because I’m breastfeeding ??) The lowering in pain to what I’m used to is really making me question if these are really cluster headaches or something else. If I list my symptoms below can you guys give your opinion? I also have neck pain on the same side due to position when nursing and I’m wondering if it is that causing the headaches instead. -attacks happen either during the night just before or during sleep or first thing in the morning (especially if the heating comes on as the stuffiness has been a trigger in the past) - Pain on one side comes on quickly -mainly located in temple moving down the side of the head into neck. Intense in sinus and in teeth. -pain sometimes starts in the neck (this is what is making me question myself) -blocked nose on pain side but not always. -eye watering rarely because it doesn’t quite reach that stage of intensity. -oxygen/sumitriptan works regular painkillers don’t. -Neck hurts during the day but no headache comes. - pain is about 3 on the pain scale (the worst I’ve had in a cycle have been if someone had told me my arm was causing the pain I’d ask them to cut it off; worse than natural childbirth 8s-they’re usually a 6/7) what do you think? Although they are not as bad as usual it’s hard having a new baby and being woken up by headaches/being nervous to fall asleep and then being woken up by baby. I’m nervous that this is just the start of the cycle and that they are going to get worse. The last cycle Verapamil -which had been working for years-stopped being effective and due to nursing I don’t feel like experimenting with things that may/may not work. I just want to be certain I guess. Since I was diagnosed about 8 years ago I’ve had them under control with verapamil so it’s been a long time since I’ve really experienced the full intensity of a cycle. I usually start taking the verapamil before the cycle kicks in the the full extent. When they stopped working last time I fought for the oxygen but I was using sumitriptan exclusively to keep them at bay because it was hard work getting oxygen sorted. I have a doctors appointment booked to get some more sumitriptan so I don’t run out. I’d like to discuss my symptoms and re-evaluate my diagnosis but I know GPS don’t know much about Cluster Headache and I might end up going back over and coming away without the sumitriptan. If you have read read all of this thank you and I’m sorry for waffling!

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 CH fam - Last week I convinced my neurologist to prescribe oxygen for me. I've never tried oxygen for my CHs before, and I'm praying that it works so that I can ease off the Relax, which I'm taking every day. My neurologist told me was going to prescribe an oxygen concentrator. I just googled this, and it's different from getting an O2 tank, which is what I was expecting. Does anyone have any experience using an oxygen concentrator? Tips? Advice? Thanks!

Hi everyone, I just found and joined the site. I will make a separate post describing my own CH experiences, but i'm on a phone and that would take too much effort for my thumbs. In the mean time, I want to ask you all if anyone has used the oxygen cans (e.g. Boost) that are marketed to hikers and athletes. They are 95%, 10 L per can for about $13.00 on Amazon. Would that be comparable to the official prescribed oxygen? I am hoping this might work for me in lieu of re-entering the medical/industrial complex... Thanks Rory

Hi Everybody First, I would like to thank everybody on this site for all the information, which I have found fantastic over the last couple of weeks of devouring this site in search of some relief. I am currently in the middle of my second cycle, the first happened 6 years ago (I had thought I was one of the lucky ones who would only ever have one cycle). Currently I live in Europe and have found getting oxygen for relief near impossible in my location. However, during my previous crisis, I used Oxygen and it was like a wonder drug. Clearly in most of the developed world (US/Europe/Canada/Australia) getting Oxygen via the medical route is: · Difficult requiring various visits to different specialists, and some don’t want to prescribe O2. · Hard to source without tons of paperwork. · Some health insurance companies won’t cover it. · NRB masks are not the best option for delivering the O2 (I will explain later). Fortunately for me I am a scuba diver, an instructor trainer for mixed gas diving using open-circuit and closed-circuit rebreathers as well as a cave diver. The last time I had a cycle I actually owned a dive shop (in the Red Sea, Egypt). Two weeks into my first cycle I found out the information about O2 in the late afternoon, I drove down to the shop, filled an O2 cylinder 80cf/12lt, put a scuba regulator on it and took it home. That night I managed to prevent every singe attack by breathing O2 for 15-20 min from the moment I felt the attack coming on. I subsequently managed to stop every attack for the following 7 weeks using O2 since I kept it with me all the time. The reason I am writing this is that, having my second attack in Europe with loads of rules and regulations it is clear that, for a cluster head to get quick and relatively easy access to O2, the scuba route may be the easiest and most efficient way forward. The Equipment Needed: Scuba Regulator Any scuba regulator can be configured for O2 use, it just needs to be “oxygen clean”. This is achieved as follows: · The first stage (the metal part that attaches to the cylinder valves) is broken down and cleaned with a solution that removes all hydrocarbons. · The O-rings (a first stage is basically a bunch of metal including springs and O-rings) that are made of rubber are replaced by non O2 reactive (EPDM) O-rings. · Instead of a standard silicone lubricant the first stage and O-rings are lubricated with an “oxygen grease”. The most common brand name is something like “Christo lube.” The above process is repeated for the second stage of the regulator (the part that goes in the diver’s mouth). Once it is complete the regulator and hoses are reassembled, and the regulator is safe to use in a 100% Oxygen environment. While you can have a regulator O2 cleaned, you can find plenty that are already O2 clean from the manufacturer. Why a regulator is more efficient? · A scuba regulator is basically a demand valve. When attached to the cylinder and turned on, nothing happens until you start to breath. As you inhale the reduction in pressure opens a valve in the second stage, allowing you to breath in as much O2 as you need. · When you start to exhale, the O2 is shut off, and the exhaled breath escapes through a one-way valve and out of the exhaust ports. You then inhale again, and the above process is repeated giving you 100% pure O2. A regulator is much better than an NRB (in my very humble opinion for a couple of reasons): · Much more efficient- no O2 is wasted through a continuous flow system. · A NRB mask covers your mouth and nose. Compressed gases (whether O2/Air/ or Helium) are filtered for moisture and are incredibly dry, which can lead to serious irritation in the nose. A scuba regulator has a mouthpiece and you only inhale and exhale through your mouth. This leads to no irritation. · Scuba regulators have a much higher flow rate so offer a minimal breathing resistance and lower the work of breathing. Scuba Cylinder Scuba cylinders consist of two parts. The actual cylinder which can be made of steel, Aluminium or carbon fibre. The second part is the steel tank valve. To be in O2 service the cylinder and valve need to be cleaned the same way as the regulator and have the appropriate O-rings and parts changed to oxygen compatible materials. Once done it is ready for use with 100% O2. Who, Where, and How Much? Almost any technical diving centre or facility will be able to service regulators and cylinders to make them oxygen clean. Getting stuff ready should not be too difficult depending on where you live. In terms of cost this is highly variable but in my travels across the globe it was never more than about $100 to $150 to have a cylinder and regulator O2 cleaned including parts and labour. Using a Scuba Cylinder for O2: This is based on my personal experience, so we will all be slightly different. During my cycle the bulk of my attacks were at night when sleeping. I also had some during the day but rarely and only when triggered by something. I kept a 80cf/12lt cylinder next to my bedside table. When I woke up feeling the start of an attack, I would sit on the edge of the bed and start breathing from the regulator. Within a few breaths I would feel the symptoms backing off, and within a few minutes they would be completely gone. On average it took me 10 to 20 minutes of breathing O2. Although most of the time it was at the shorter end. An important note about breathing: The key to using a scuba regulator is proper breathing technique. Rapid fast breathing is pretty bad since you are not letting your blood (by extension your brain) get saturated with O2 quickly. You need to inhale slowly and exhale slowly. Personally, I inhale for 8 seconds and exhale for 9 seconds. So, in effect I am only having 3-4 breaths per minute, but they are top quality breaths full of O2. This is the way scuba divers breathe, since it is the most efficient way to use gas (reduces gas use), and when breathing oxygen-rich mixtures for decompression it is the best way to oxygenate your body and off-gas the gases. How long will a 12lt/80cf tank last? This will vary from person to person, and how you breathe. From personal experience I normally used to have 5-7 attacks per day. And a cylinder 12lt/80cf cylinder charged to 3000psi/200bar would last about one week before I needed to refill it. You have to remember with a demand valve there is minimal waste. In terms of cost this will ultimately depend on where you live, but ultimately a 80cf/12lt cylinder pressurised to 200 bar, should not set you back more than $30/$40 a fill. Regards, Sam I hope this clears up some of the points about getting O2 via scuba gear. I will write a follow up to this post on what certifications will allow to get O2 fills, what you need to get them, the quickest way, as well as a few other ways and methods which should give you access to O2 from a diving centre. I also hope to cover moving around with your O2.

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

Please help my husband has been using oxygen to abort his cluster headaches for years now. He also relies on energy drinks to do the same when oxygen isn't available but suddenly beginning yesterday rthese methods stopped working what can he do??? he has a headache right now and it's like he is being tortured.

So my attacks occur almost exclusively during sleep and I wake up at about kip 7. Does oxygen still work as an abortive in this situation when the attack has already been ramped up this high.

I am at the Comfort Inn for the Convention and the Beast decided to hit me right when I got here. No Oxygen here yet. The Beast only hung around for 90 minutes so grateful it left.

I know there is oxygen available at the conference. What size tanks?

I need help. Long time ch. in cycle. Suddenly cycle became much worse. Ran out of o2. Its Sunday. Supply stores are closed. Won't help me. Someone please tell me there is a way for me to obtain multiple tanks of o2 on a Sunday when everything is closed! Desperate. Kip 8-9 all night last 3 nights. Anyone ever had to find an emergency alternative source for o2???? Help. I don't know if I can survive a night without it. Barely can with it. No sleep at all in 3 days.

Good Evening Everyone. This is my first post here. Thanks largely to the information here I finally have oxygen therapy. It was a long road getting here and it truly amazes me how effective it is. I am now looking at upgrading to a demand valve like the Allied Healthcare Products L063. My question is should I get the 0-40lpm or 0-160lpm model? Does the 40lpm model have high enough of a flow rate to keep up with the breathing technique? Thank you in advance!

Quick question: I have wondered this for awhile, and I am sure this has been covered before but at what point are you just wasting O2. I awoke this morning in a battle with a K8 and hit the O2 hard, took about 30-35 min for the pain to get manageable, then at 40 min it was down to nothing, but I didn't feel that magic moment that tells me it is completely over. I believe all the O2 users know what I mean, if not I feel this release that tells me the beast has slipped away, and then I continue for 5 minutes. Today it took like 20 min no feel of release but pain was not there so I stopped the O2, and feeling like a mild shadow. I stopped the O2 in fear I was wasting my precious supply ( and I have a good supply of O2). So simply put, what are peoples experience with staying on the O2 and stopping due to fear of wasting their supply? Thanks in advance for any and all info CB

Hi all, I have been a regular "spectator" on this site for some time, but just recently joined. I am 58 years old, and have been getting CH's since my early twenties. I am nearing the end of my fall cycle, but can not locate a supplier for oxygen. I live in Orlando FL. I used to get it from a sleep disorder company who has gone out of business. I spent the last two days on the phone and google and it seems the large tanks that I used to get are next to impossible to find. I see my neurologist this Friday, but it is looking like a prescription for o2 will be useless. If there is anyone on here that lives in central Florida I would be REALLY appreciate any info on a supplier. At this point I am going to have to look into the welding o2 (wife has not been keen on the idea)... I did recently start Batch's <(spelling) Mag/cal/d3 regimen on Nov 26 so I am hoping It will help for next bout. This site has helped me get through some tough times, it's how I first found out about the oxygen some years back, and just reading about others helps you mentally, because it seems like NOBODY has a clue about what cluster heads go through. So if anyone does have info on o2 in Orlando area PLEASE drop me a line. PF wishes to all!!!!

Hi, I'm about 2 months into a cycle. I've had these ugly head monsters for 15 years, started when I turned 30. I also have multiple sclerosis, diagnosed 4 years ago. I get cluster groups once or twice a year that last around 2 months give or take a couple of weeks. Oh, I'm also a woman. I think that's all the basics out of the way. I'm so amazed by this website!!! Congrats to every member for all the encouragement and advice. Last time I tried a website support group was around 10 years ago, not such a great experience so I didn't try again until today. I'm here to share what I know and ask about some stuff I've seen so here goes.... OXYGEN: This is my primary go to fo sho. Ten years ago someone mentioned oxygen on the support group but I couldn't get a doc to supply what I needed. So I suffered another 3 years until I met my husband. He brought home a emergency oxygen tank from the workshop (he's an engineer). Blew my mind that it worked!! That's when my initial battle with docs began. I could give a huge rant but please, if you suffer from headaches, fight your doc or get a new one!!!!!! Go between cycles if you can and get set up!!! Getting the oxygen wasn't bad after fighting threw two docs, but getting the equipment to go with it was an on going challenge. I was able to get a script for Apria to deliver o2. Apria is a pain in the ass but the drivers are actually good guys, in my experience and definitely know more than anyone you'll get on the phone. So first get some tanks and take whatever regulator and tubing they'll give you. Next, go on Amazon and buy the right regulator. You will need a high flow regulator that opens to 15ml and high flow tubing. Very important!!!!! Never attach oxygen to your face at a high flow. Hold it under your nose, so if by chance you fall asleep the oxygen will fall away from your face!!! This method is for short term use and is why your doc and Apria will fight you on getting the equipment but in my opinion, the only way oxygen is super effective. If your oxygen is covered by insurance, keep the script current! It's worth paying the copayment every month so when you need the o2 its there. Now, I have questions if anyone has some experience in the following I would so appreciate to hear from you. Shrooms?? How much vitamin d3? Does melotonin work and how much? Caffeine and how much? When I exercise vigorously it seems I can bring on a ch in about 30 minutes after, anybody else? Anyone have multiple sclerosis also? I' ll be so grateful for any responses and I'm happy to share in more detail any of my experience if anyone would like to know. Thank you all again.

Hello to all forum members. I appreciate if someone can answer the following questions. I'm from Barcelona and I can not see my specialist neurologist in Cluster until the end of August. I can only see a neurologist Social Security, he has no idea Cluster or oxygen ... I am 36 years old, episodic every 1 or 2 years. For 1 or 3 months. It is the first time I use oxygen, for a week. It's very, very effective. 15l Oxygeno 100% for 15 or 20 min. The question: After 10 minutes of applying the oxygen I feel a buzz / acute ringing in both ears. This feeling is lengthened during the day and goes away and comes back. Someone had this effect with oxygen? I'm taking Verapamil and removing Prednisone. And Sumatriptan injectable. Thank you very much everyone for this valuable community is a place with lots of information and help. Sorry for my english. Thanks

Here on a Sunday I'm requesting an O2 prescription via my online "patient portal" with my GP doctor's medical group, in hopes of them seeing the request first thing Monday morning, and my being able to fill it on Monday. I had asked the doctor for a prescription weeks ago when I suspected a cycle could be starting up, and now that I know one is indeed getting in gear, I've learned no prescription was called in. Maybe because as a GP he'll have no experience with CH and not know what to write. So I think I'll offer an example of exactly what he could write, and although maybe I should be an activist about educating him on high flow 100% O2 just in case he ever encounters another CH patient, I'm a little more about the most pragmatic way to ensure he'll write a prescription at all right now. It has been my habit in the past to work the system by getting whatever sort of prescription, then yanking the whimpy low flow regulator off the M tanks delivered from Apria and throwing out their joke of a rebreather mask practically before the door even hits them on the way out, while fastening my hot rod high flow regulator on there in order to get down to some real business. So who here knows exactly what a GP would be likely to automatically and unquestioningly agree to write for a CH O2 prescription (that I could then do my own thing with)? Welding O2 will be my backup plan, and I'll be seeing if per chance there is a local headache specialist that doesn't engage in the standard and grossly negligent practice of making CH patients wait for months for an appointment. Also I'm busting, on the D3 regimen with benadryl, know about all the pharma, blah blah.

I just recently got my new oxygen set up. I have 2 "M" tanks (Which cost me $50 each to get), a 'Clustermask", and a high flow regulator. The entire set-up cost just under $180. I thought, not too bad. But then ... I had several cluster attacks in 1 night, using an entire M tank and part of the second tank in just 1 night. When I called to ask about stopping by to get it refilled or exchanging for 2 full tanks, I was surprised to learn that it also cost $50 per a tank to refill them (Or exchange them, it doesn't matter). If I can use up $50 a night in OXYGEN, how much is this going to cost me PER MONTH ?? THAT IS CRAZY !! The sales people said that "Someone else with clusters" gets oxygen from them too and that their insurance pays for it ?? Mine doesn't (Medicare) ?? WTH ?? "I can't afford oxygen" ... is just plain crazy !! < RANT OVER > Suggestions ?? 1LS

Greetings fellow Clusterheads! First time poster, long time follower. Last night my regulator started making a dreadful, loud, creaking noise, and so I'm wondering if anybody can recommend (if there is such a thing) a medical-grade regulator that works with a welding tank. (My current regulator is of the welding variety.) The welding regulators, as many of you know, are kind of pricey, so I was hoping to save money by going the way of a medical regulator. Any suggestions? Ironically, the noise only occurs when the regulator is set within the range that I need it; crank it up a bit and it goes away (while wasting precious O2.) Thanks in advance!!! JTux