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Most of us use M tanks. Huge cylinders. Get friendly w your delivery person. It goes a long way. I have always used Apria, tipped them randomly when I can and asked for their Cell #s. I txt them when I am running low and always get 3-5M tanks per refil. They have seen me get an attack and have had other CH patients. They knew about busting and have all become friends. I’m terrified since I moved and haven’t called them yet in my new location. Will call Monday as I’m out of ketamine and nursing my tanks. Ran through half a tank last night. I usually go through 1/2-1 big M tank a day. If I use E tanks one tank is good for 1-2 CH. at 25LPM. The mask and high flow will do wonders for stopping an attack...

Most people think that plug-in unit (a concentrator) is pretty ineffective, because it's less than 100% pure O2, since it uses room air to make the O2. Also, most concentrators don't go high enough in flow rate to effectively treat CH. A basic red bull would be sufficient. Many people find that the smaller energy shots, such as 5-Hour Energy, are preferable, in part because you can get them down quickly and in part because they actually have more caffeine than the larger Red Bull-type drinks. For more than a few people, a strong cup of coffee works, at least in the earlier stages of CH.

Yes, the usual amazing post from spiny. Like her, I have to ask -- Only Emgality? That would be very unsatisfactory. The Emgality might work, but there are strategies to get you out of pain now. And regarding that Emgality prescription, it is for 300mg? That's what is needed for CH. Even with a migraine diagnosis, you should have been prescribed Verapamil and some kind of triptan (perhaps the injectable form, Imitrex, but maybe tablets or a nasal spray). Did none of that help you? spiny has covered it all so well that there's not a lot to add, but this post might have something useful for you to know: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

Hi Cursed and welcome! I'm delighted that you found us and very quickly too. Yes, the pain is brutal and you will now have much better methods to treat/deal with it. And you did find US ASAP!! I had to take my husband with me on my second trip to the Neuro to get him off the 'Migraine Train'! Ease up on yourself Cursed! We, as women, have to fight much harder and longer for a correct diagnosis. I had been on carbamazepine for a decade then too and I had to fight for that! When I finally got a diagnosis from a doctor, I had had CH for about 30 years. When mine first started in the early 70's, I had every test done that they could think of because 'women don't get CH!' Funny that the meds I was given were common for CH and seizures back then. Well, yes, we do and the balance is shifting to almost 50/50 male to female now. But you still have to beat the doctors over the head at times. Glare...... Did he prescribe O2 at 15 to 25 lpm via a non-rebreather mask? That is your first line of defense against this beast we live with. And any headache specialist knows this! That comes before Emgality. Is he pushing you to just take the shot as your first line of defense with nothing else? Are you Chronic or Episodic? Why did he say 'atypical'???? What was his explanation? Apparently he did not give you a script for Verapamil or Prednisone either? Are you in cycle now, or are your hits year round, as in Chronic CH? I know that you are getting hit, just not what form of CH you have currently. Normally, a headache specialist will prescribe both meds. The Pred is used to bridge you till the Verap kicks in. Normally a Pred taper is what will get you pain free for starters and then the Verap kicks in to provide long term relief. The other script given is for pure O2, from a tank, not a concentrator, with a regulator that goes up to at least 15lpm. That is the thing that will kill a hit for you in minutes if used correctly. Since apparently you were mainly offered a shot, we can help you a lot with the pain and hopefully get your doc up to speed as well. Emgality works for some, but not all. But to only offer a shot is a concern in my book. Meanwhile, you are still in misery with no relief. I am shocked. At the first sign of a hit coming, perhaps heralded by a 'shadow' or mild form of a hit, ingest some caffeine - Energy drink or shot, coffee, V8 Energy all can be a huge help. Inhaling cold air helps many. Personally, I used a scalding hot shallow bath to sit in with a hit and just kept adding more hot water. I would take a room temp wet cloth to put on my head/face until the hit reached the point of 'don't touch!' Then, I just rocked till it left. Some prefer cold to hot, so you will have to see what is best for you. Additionally some just put their feet into hot water. The theory is that is dilates the blood vessels relieving pressure in your head. Others take an ice cube and put it ion the roof of their mouth on the CH side of the soft palate. Once you get the O2, you won't need the bath routine. It appears that you may be Nocturnal due to the time of this post, so some suggestions there: Sleep in a recliner with your head above your heart. You will wake sooner, with less pain and have more time to get the caffeine down. etc. Another trick is to inhale cold air: Outside air, AC vent, freezer all seem to help some people. Then, there is the D3 Regimen. Plain old vitamins that can do amazing stuff for Chers. They lower the pain level and slow the ramp up - both are great advantages to have. And for many, the vitamins can stop the cycles completely for a lot of people too. Learn you triggers! Alcohol is the main one that gets most of us. But there are many others that will bring on a hit, like MSG! Take a moment and read the blue banner at the top of the page: New Users............ There is a lot of information there that you will find valuable. Hugs and welcome to the group!!

Hi AC...welcome... ...i know it's counterintuitive, but 3 lpm (especially mixed with room air) can and does use more oxygen (with lower success rate) than much higher flows (recommended 15-25 lpm). i could kill a hit in 5-15 minutes at 8-12 lpm provided i started at the first sign of a hit ...preceded with a quick downing of an energy drink on the way to the tank. with a non-rebreather mask got 2-3 aborts per e-tank... best jonathan

Yo CE...so glad you found us... talking, sharing, or just plain ranting with folks who understand and care can be incredible "medicine" all on its own......and then ya got spiny! kept reading that truly wonderful post to throw in something...but there weren't no room. Golden!! ...all i can say is that it makes me sad and frustrated that somewhere along the way there was no OXYGEN given. guess it goes along with the clueless misdiagnosis, but every medical reference i've ever seen (from the 80's on) acknowledged that O2 was THE recognized abort. safe, fast, easy once dialed in, ways of making it inexpensive, and none of the nasty side effects we all know so well with the migraine drugs thrown at us. may not work for all, but does for more of us than anything else...save maybe triptans. you've never been given, Imitrex (sumatriptan), Zomig...or any other triptan..or they didn't work? i'm shocked. OXYGEN can be a game changer...saved my sanity, perhaps my life. That should be your first step.... best jonathan

If Western ProResp is an oxygen supplier like we have in the US, they should be able to give you a mask and a higher-flow regulator (and bigger tanks). Unless your doctor prescribed cannula and 3lpm, which seems very unlikely. They are giving you what would normally be given to a person with COPD. They might never have had a patient with CH. I think some people would recommend taking the cannula off and just sucking O2 through the tube for possibly better results. If you have to, you can buy a simple non-rebreather mask at amazon.com, or a fancier mask designed for people with CH here: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit, and you can buy your regulator(s). It's possible that you might get better results just inhaling air from an air conditioner until your system is right. In addition to a larger tank (or tanks), you want to keep one or more smaller ones for portability. Of course, you will have much faster aborts with a proper system. For now, try energy shots or some of the other abortive strategies listed in this document (toward the end, under "Treatments without O2 . . . "). https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ The whole document might be worth looking over. Unfortunately, your pattern of mild early cycles followed by more severe one is not uncommon, so you need to learn to manage your CH and start preventing cycles.

Welcome to the community @CursedEyeball! Spiny has covered all the bases but I'll double down on her O2 and vitamin D3 anti inflammatory regimen recommendation!! Dallas Denny

Welcome to the community cursed . So glad you found us . But also sorry you had to . Spinny has given you a great intro to this forum as she always does . She is 1 great woman . lits alot to take in but you need everything you can get to beat the beast . The people on here are great they will give you great advice and support , and their is always some1 here willing to listen whenever you need to ket off a little

....and one day Tonto said kemo sabe well, kiss my ass, I bought a boat....

This chick nails JP's "Unwed Fathers"....and the pedal steel is awesome!@

@Dallas Denny How are you feeling? Any better news from the doc this week? Also Happy Birthday to an old tough Marine yesterday and happy Veratrin day to you today! Hope all is well

Back in February of this year my neurologists decided to try me on emgality at 300 mg each month for 3 months. The first month I took the medication I had zero migraines at first then as the weeks went by I started getting cluster headaches totally off season for me since my cluster headaches are every three years for approximately 18 weeks and I had them last year. The clusters brought on by this drug were not normal for me in other ways too. My normal clusters hit hard level 10 last about an hour without medication (imitrex) and I get them multiple times over the course of each day and night. yet the ones caused by the emgality were approximately 2 per day (24 hours) and rarely passed a 5 on the pain scale. after the first time I took it the second month not realizing it was in fact the drug due to me having a root canal done in the first month. The second month the clusters got worse right after taking the second dose and I noticed other side effects such as eye strain, joint pain all over and some stomach issues. as the month progressed I noticed the clusters got less intense and then I took the third dose and it got worse again only this time my migraines were normal as before I tried this medication so now instead of helping at all it just made life worse for me. So in closing I would not recommend this drug. Hope this helps someone, Mark

A nose cannula and 3lpm is not going to really help. You need the proper mask - non-rebreather - and proper flow - 15 to 25lpm - of pure O2 from a tank. You do not have COPD and essentially that is what you have been given - a treatment method to just supplement a 'little' extra O2 for bad lungs. Whole different animal. They are supplying you with the little tanks for a COPD patient to truck around when they go out and about! Glare.... You will need to ingest a lot of D3 to worry about toxicity. Most of us on the D3 Regimen, take 10k or more per day. You must take the co-factors with the regimen! They matter, a lot! https://vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 That is a link to the original regimen. It explains a lot for you. In the mean time you could try filling a trash bag - big kitchen can size - with O2. Then, exhale fully, then inhale deep - room air - about 5 times. Next, do the same with the O2 in your bag. Forceful exhale, then deep inhale, hold a bit and repeat. Use up what you put into the bag so you have no worries about excess O2 in a room. It does feed a fire quite nicely. How to fill it? Cut off one small corner at the bottom. Take a small soda bottle, plastic, and cut off the bottom. Tape that with the neck through the bag so that the opening is sticking out with the cap on it. Tape the whole top shut. Then, go to the bottom and cut a tiny bit of the corner off and tape your hose into the bag with the cannula removed. Now you can fill the bag with your O2 and take the big deep breath that you need. Cover the top while you hold and exhale to conserve your O2. If you type 'redneck bag' or similar in the search bar above,it might bring up a picture. I got stuck on the phone for hours and I see that many have already replied! But, I'll post this anyway.

....you want anything with minimum 100-120 mg caffeine and 1000 mg taurine (thought to boost caffeine, some are intolerant). do a google search of ingredients. red bull was the first and is highly advertised (so is expensive) and actually lower levels of energy ingredients than most. i haunt the grocery outlet stores and get brand name product for less than $1 ea. the 2 oz varieties way portable, easily/quickly downed, minimal sugar (reg versions have OUNCES), less of the typical gacky taste... ...totally agree with CHfather re O2 concentrator...not pure O2, not enough flow, EXPENSIVE (usually a lease), suspect older versions even less efficient as they heated up with use....

The facial sensation can be your CH. CH is always changing. My CH began 5 yrs ago w strange facial sensation and tooth pain. A month later was my first hit/attack....

Hi Acanderson! And welcome. It is advised to get a blood test to see where your D3 is currently. You can do this through your doctor or on your own in the States now. Lab Corp is one that will let you pay for a stab to see where your D3 currently stands. You want it to be over 80ng/ml. I tend to run at 100-110, which is fine. Toxicity is much higher. Some doctors can go a bit upset if your levels are on the high side, due to concerns over your PTH and Calcium getting out of whack. However, it has been shown that if those numbers are in the normal range, high D3 is not harming you. So, get a blood test, then begin loading with the D3 and the co-factors. After a month or six weeks, get another test. Then you will know how close you are to the level you need to maintain to keep the beast away. It can be truly amazing! Even if you do not go pain free the first year that you take the Regimen, your hits will be milder and the ramp up slower. Both are a good thing. More time to hit your O2 and caffeine and less pain all around! Very happy that you found us! Sorry that you needed to of course. Lots of great people here and we are an understanding bunch who want to help.

Not at all... I don't claim to know even half of the info you've posted..I do believe you misread my post. Was just a simple question as I was curious due to the amount of info you seem to know about the disorder also I've never attempted busting to scared to try...

Thank you @Rod H I’m fighting the good fight. Did manage to get a little nasal spray for my trip and to bridge to a new doc. However one ketamine clinic I spoke w told me at home ketamine nasal spray is illegal in Florida. I’m not sure if that’s just for Esketamine for depression or all ketamine. I’m going to be devastated if they were right about the law. I really need the oral troches and then the spray if the troches and oxygen don’t abort. Less than a week till we move and I’m shitting bricks about not having oxygen if Apria won’t fill my tanks while I’m “on vacation “ until my health insurance gets switched. Thank god CMS approved oxygen this year. Thanks to all that pushed for it all these years.

I've been with the same company for 31 years. I get hit I go home and come right back. I manage a grocery store with 200 employees. It sucks when I'm in cycle but I just have to power thru. Thank God for this place. It has made it alot more bearable. Freud I read most of your posts hang in there.

Rocking back and forth right now, wishing I could just pull my eye ball out with pliers, and woke one of my kids up because the pain is so bad. But saw an actual headache specialist this morning after 2 decades of seeing gp's and neurologists. I've always been told it is migraine. My GP when she finally referred me to the headache clinic even apologized and said she "had migraine blinders on because" I am a woman and she doesn't see women with headaches that aren't migraine or stress. So headache specialist today (1st appointment) gave me the diagnosis "atypical cluster" and prescribed emgality (sp?) I would be happy that this means I could be closer to some sort of solution or even reduction, and should be happy because I've never heard of clusterbusters before tonight and it's sort of a miracle to discover that I am not so alone, but the pain is just so bad right now that nothing matters. Why? Why this? Why us? How can any thing hurt so much? How can I just pull my eye out? It's a f*cking nightmare that just never ends. I'm sorry... I should probably wait until I feel better to write an introduction post. But I feel lucky to have found you all and I also feel so angry. I feel so angry at myself for googling symptoms so often, thinking that cluster fit better than migraine, and then not advocating for myself better. Not searching more, not finding this website, etc. because, "what do I know, I'm not a Dr. and they keep telling me I'm wrong." Oh my God they pain is so so brutal.

Update bad news. Saw new Neuro today and he doesn’t use ketamine like his office staff said he did. I’m up the creek w no paddles. Getting my self used to not having any aborting options other than the 4 M tanks I’ve been saving for the days you just want to die so hopefully I don’t enter that head space. instead the new Neuro wanted me to try Emgality. This was after me telling him I’ve had CCH since 2017 w only one month break in the first year from mm but couldn’t repeat results. He then says @are you sure you have CCH you get 6-10+ attacks a day? “. I almost lost it. This was after listing all the failed treatments I’ve tried and the ones I won’t try. He gave me a garbage bag full of Emgality (small bin) full of migraine starter boxes. So that’s 2 120mg auto injectors that I have to play w one to only get half a dose out of and into me each month. I have not heard anything good about success in CCH Pts. They abandoned the CCH arm of the study for Christ sakes. He didn’t want to hear it. Says so I guess I’ll see you in 3 months? And he took an empty troche packet w my script. To talk w his partner about but wasn’t hopeful. the hunt fir non psychiatric at home use Ketamine continues. Purdue Pharma Feck U. Screwed up all of pain management. Freaking infusion only clinics are everywhere. I’d try it if I could afford it.... got my oh shit helmet on!