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Found 22 results

  1. 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
  2. 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?
  3. 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
  4. 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 so
  5. 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
  6. 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!
  7. 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
  8. 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/C
  9. 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 attack
  10. 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.
  11. 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.
  12. 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.
  13. I know there is oxygen available at the conference. What size tanks?
  14. 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.
  15. 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!
  16. 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 t
  17. 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
  18. 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 ab
  19. 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 g
  20. 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 b
  21. 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
  22. 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 u
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