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In through nose and out through mouth is because you have a cannula. Many, myself included, use the breathing tube. It is just a tube that you suck the O2 through and no mask sits on your face. I can't handle the pressure of the mask. When not inhaling, a valve closes off the opening in the tube and directs the O2 to fill the bag hanging from it and you exhale out the tube. That gives you ready O2 for the next breath. I like to run mine a little high as the force of the O2 pushing when I inhale, seems to help with my aborts. With the Redneck bag, you inhale through your mouth and out anyway you want to exhale. It will give you more O2 than that tubing will too. As you are holding your breath for a few, it is still filling the bag. So, you have more to pull from and are not limited by the 3lpm delivered by the regulator. Accurate!!! Works best for me. For nocturnal hits, you can try sleeping in a recliner with your head above your heart. This enables you to wake earlier in a hit and get on the O2 sooner. And not going 'prone' just plain seems to help many of us. I have spent whole 6 month cycles in the recliner that I hate!!! It is old and ugly, but serves a great purpose. Others sleep on pillows on a table in front of them. I can sleep a bit if I do not lie down to do so. Cold air inhale also jives with ice cube in roof of mouth. Both are hitting the soft palate with cold, blood vessel shrinking temps. So stuck inside? Grab an ice cube and hold it up there with your tongue. Weird things can and do help.

Hi, and sorry you need to be here, but glad you found this forum, it has helped me immensely. I support what has been written and will further offer that the Vitamin D3 regime has helped me. Please follow it completely including cofactors and testing D3 levels. Adding your data and results to the collective process will help others. I can also offer that an oxygen demand valve may make learning the technique a bit easier and may save some O2 while providing all you need. If you are purchasing a regulator and you think a demand valve is in your future, pick up one with the proper DISS connections. On the Clusterbusters website is much info on regulators and demand valves. I am pretty quiet on the forum, but happy to help where I can. good luck.

"Redneck bag" - https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/ You're on your way to changing that. Not that things will be perfect, but many times better than they are now, for you and for them.

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 all I could get was a nasal cannula I’d either fill up a bag like the redneck posts or I’d put the cannula in my mouth and fill my lungs. I know a cluster head that does that...

...nope...makes no difference. highest reported success rate is hyperventilation (even w/o supplemental O2 can help). others do slow breathe, and/or breathe and hold....or a combo. you need to try them all to see which works best for you...but PURE O2 is critical.

[Edited to say that I was writing this as your post came up.] I know that link I posted earlier is a lot to read, but I'd urge you to go through it (or ask your wife to). https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ Remember that you can divide your Imitrex injections so there are a lot fewer side effects: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ I might not be in the majority about this, but I don't think a couple of 2mg injections of sumatriptan are going to make your situation worse, and I'g go for stopping the pain. You can do all the better things later. Lots of people use just a breathing tube in the mouth, with no mask. Would this mask from Canada be available sooner? https://www.performancehealth.ca/nonrebreather-mask They are very inexpensive -- any chance you could ask for one from a local EMT unit, hospital, or maybe fire station? (I'm not sure whether it'll make much difference at 3 lpm, though.) Did you ask your O2 supplier about getting proper equipment?

If the pain is that bad buddy I'd still sit in the car with A/C on like I said put your mouth against the vent and inhale it really work.

I can't inhale through my nose as when I'm under attack I get really congested so I have to breath through my mouth . I can still abort most attack within 10 to 15 min buddy . You just need to find the right teqnique for you . Every attack is different . Sometimes I have to hiperventerlate sometime I just have to inhale slow and deep and hold for a few second b4 I exhale .

Nasal prong really are no good buddy when I first went to ER unit at local hospital they would always use them would never help . If you can't get a non rebreathable mask at present I'd inhale straight from the tube

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.

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/

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

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!!

Not sure if anyone has ever looked these guys up but they are doing clinical trials on Cluster headaches treatments with psilocybin. I have even invested some money in their stock since i really believe in what they are doing.

It sounds, to me, like you have bad heavy shadows lasting 2-3 days with your clusters in between. As in you get a shadow and tells you an ice pick is coming. Then you get the cluster and it resolves, but not completely and you still have a heavy shadow. Caffeine and ginger (tea, pill, candy) are very good for shadows. O2 will also help. The 'ice pick' part you describe is the Cluster and fits the time frame. The pains in between are shadows and other nasty shite from CH. Like getting a Cluster knot on the back of your head or neck that hurts like the devil and puts you on notice that a hit is coming. I am shocked regarding the 'medical' treatment that you have received! Have you ever had an MRI? Anytime in the last 5 years have you had one? You need one! It rules out 'other' stuff and helps clarify your CH situation. CH will not show on an MRI. In my opinion and we all have one, your treatment is barbaric. 'We can get O2, but it will take a while. How about some shots in the mean time? And I will see you back in three months. I hope that you have a PCP that you trust and who will work with you. He/she can get you a MRI and give you a Pred taper for a week. Just to see if it kills the hits for a few days! They can also start you on Verapamil, but will most likely go with a low dose. You want short acting, not ER when you do get the Verap!! I'm going to skip down and read Jeebs post and go from there Cursed. You have truly been put through a ringer and not offered a stinking thing. Your rant is fine and don't apologize for expressing your pain or frustration. We do know it!!

OW. Kudos though for finding such an evocative description. Meantime, just consider me one more from the legions of @spiny worshippers , and I'll say your description doesn't sound like typical cluster to me, though I'm nowhere even close to being a diagnostician. So for all I know, "atypical cluster" might be accurate. One way I could try to categorize what you are describing would be cluster attacks with constant shadows in between. CH'ers are known to deploy ginger for quelling shadows (lower level, lasting cluster symptoms) BTW. You've probably noticed that there are diagnoses out there like cluster migraine, or for constant CH-like pain, Hemicrania Continua? From Googling: Hemicrania continua is a chronic and persistent form of headache marked by continuous pain that varies in severity, always occurs on the same side of the face and head, and is superimposed with additional debilitating symptoms. on the continuous but fluctuating pain are occasional attacks of more severe pain

It is said that sucking ice water through a straw aimed at the roof of your mouth will also accomplish the desired "brain freeze."

My wife asked for a larger tank this morning when she called and E tanks are their biggest. They obviously don’t treat CH that often. They are more sleep apnea and copd focused.

re the a/c....many a clusterhead same-same. i did that, or head in freezer, or hottest shower on head, some do cold, some alternate. spiny cooks herself like a lobster..

Thx Shaun. After looking online a long time I found a non rebreather mask tht says will be delivered 1-2 days. For a price obviously but at this point I don’t care about price lol. I also just bought ginger capsules on Amazon and 1 day delivery. Just gotta make it through tonight and hopefully I’ll be good to go. I remember back in early 2001 when my first attacks started I didn’t know any better and would go sit in my car and blast the ac (mainly because it was hot out) but I’m pretty sure that helped back then so worth a shot too if need be….except it’s -3 Celsius today and light snow lol

Thanks for posting that link CHF! Yes AC, your inquiries and willingness to move forward on your own, sans medicos, will speed the process up by a lot. Knowledge is power and you are acquiring knowledge, ergo power over your CH!! Jon needs to post a Superman Gif about now!!!

@Icantdance, thank you for posting this. Many of us wonder how Emgality is working out. Not that the anecdotes tell a whole story, but they're valuable to know. And I'm very sorry that it didn't help you.

Theirvyou go ROD H just for you

....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....

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.

i took the Emgality loading dose a few weeks ago. Got a fever, rash and am experiencing constipation issues and weight gain. Had zero effect positive or negative on my cycle.

Great group . Big lose when freddie passed , but your man Mr Lambert is doing a unbeilivable job

...they gave Dylan a well-deserved Pulitzer ....and for my money, there has never been a lyric written that's more evocative, gut wrenching, and affecting than this. In Japan, they declare artists like these National Treasures ....JP, oh my....

There's a hole in daddy's arm where all the money goes...

If you can get off the triptans get some o2 if you haven't already and really look in to th D3 regime its help so many people with CH . I know it's easier said than done with the samitriptan . I was the same it was the only thing I had prescribe by my neurologist. It took the pain away within 5 to 10 mins so I thought it was a God send but when I look back all it did was made my cycles more intense and prolonged the cycle

OH WOW !! I woke up to a blinding CH/KIP10 this morning and thought fuck it, before any abortive or other techniques I will run try the HOT WATER TECHNIQUE. Stood in a bucket of hot water for 5 minutes approx, to just below the ankles, and went from a KIP10 to KIP5 within a few minutes. GREAT !! THANKS A BUNCH, great for instantly lowering blood pressure>..... however KIP 5/ Nasty eye pulling shadow is persisting for some hours now since the hot water, but I can manage to function somewhat with KIP5. Thank you CHF for those interesting treatments / Will definitely be trying that again .....

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.