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What the doctor wrote the script for is really irrelevant to your O2 use. The lpm settings you use from the regulator that you put on the tank are the only factors that affect how much O2 you are using. An M tank holds about 1700 liters of O2. That means that if you use a setting of 20 liters per minute, you will have about 85 minutes of O2 in the tank (1700 liters in the tank being used at 20 liters per minute; 1700 divided by 20 = 85). The higher your lpm settings, the faster you will go through the oxygen that's in the tank, but that is not affected by anything related to the script that the doctor wrote.

@EggMan yay I love supportive doctors! That’s awesome yes it is quite expensive. And it’s annoying to rely on the medical supply company. Go for the emgality then! Keep us posted

Tony, the member really needs a MRI!!! The symptoms are odd. I would definitely make that the number one priority for the member. It is an 'odd' set of symptoms and that makes the MRI more imperative in my mind. For me, a sinus infection has obvious signs of infection: nasal discharge that is green or yellow. One side may get worse than the other if I have been lying with that side down. Otherwise, no. I have not found bleeding to be part of a sinus infection. In addition, with a sinus infection, my whole head hurts, not one side. But, we do know that some things being wrong in the brain can cause pain and symptoms. We had a young Canadian member who was having 'mostly' cluster symptoms, but with some odd bits mixed in. He finally had the MRI after over a year and they found an aneurysm and operated. He was pain free post surgery. He had daily pain that fit CH best of all the headaches, but it was not CH. He also had some 'odd' symptoms. Being in the Canadian system, meant that it took over a year to get a MRI. Please encourage him/her to push for that MRI like they their life depended on it. If medical won't do that, then a scan might help show an issue and then they would agree to the MRI. The symptoms worry me. I want to know how this turns out in the end, so please give us an update if you get one. As a side note to this, a friend took her grown son in for hernia surgery last Friday. He had been complaining bitterly about the pain from the hernia. Doc said he should not be in that much pain and blew him off, but did schedule the surgery. When they went in, they found a tumor along with the hernia. Ergo, the excessive pain in the belly. The tumor was pushing on internal organs. Had they bothered with a scan, they would have found it sooner. And he would not have been left to suffer waiting for 'elective' surgery during the pandemic. Seeing what is or isn't inside is a good diagnostic tool to use!

devon' is right. I was wrong. An M tank holds about 3000 - 3400 liters (not 1700, as I had written). Divide that range by 20 and you get 150-170 minutes of O2 at 20lpm.

I am skeptical of anything, but trying to stay optimistic. He’s the only neurologist I’ve seen though. The laundry list of pain killers and migraine medications I’ve tried he said were worthless on cluster headaches. He seemed a bit dismissive on vitamin supplements but almost high fived me when I told him about my welding oxygen and told me to keep using it. He said many of his patients can’t afford the medical O2 they’re prescribed. This gave me more confidence in my “under the table” setup in terms of safety and efficacy. Since I’m episodic and average 2-4 per day, I think the Emgality is worth a shot.

An M tank, at 2000 psi will last about 156 minutes at 20lpm. You can find o2 rate calculators for most smartphones. Used them when I worked as a medic.

I just did my loading dose of emgality a week ago, two auto injectors into the thighs. Having done self dhe injections and sumatriptan injections, I will tell you the injector hurts. So far no change whatsoever but wasn't holding out too much hope, as from my understanding it is amazing for migraine, useful for episodic and nearly useless for chronic, but was worth a try. So far no side effects, maybe a bit more irritable but that is it. I have been lucky as my city has "CHAMP" as a dedicated clinic. Calgary headache assessment and management program. Neuros all specializing in headache disorders. Also my primary care physician keeps in touch with them and is pretty knowledgeable, as a 'plus' I ended up having a "10" hit at an appointment with her, so she saw firsthand what that looks like. It honestly shocked and scared her, so was a good thing. Knowing what you are dealing with is a good thing, having it be clusters gives you a sad welcome to a somewhat exclusive family who would probably prefer they get no new members

@EggMan I think there is a thread someone started on here about emgality. Quite a few people have posted and I just dont think the results are promising. I don’t know. I think it also depends on whether you are episodic or chronic. Maybe episodic sufferers have better results? Also I’ve been to 6 neuros now and I think they are all super ignorant to the severity of clusters so I don’t trust a lot of what they have to say. Not saying all doctors are like this. But the ones I’ve encountered...yep. Also my doctor is SUPER medication forward. Every time I go he asks any luck with neproxen? Any luck with relpax? Fioricet? Etc. it’s SO ANNOYING

EggMan I have tried Emgality. The first time it took my cluster from 90 a month down to about 45, I am thinking that was just coincidence. the following 2 months it had no change on the amount of attacks I had although they did not co back up all that much either. The 4th time I took the shots all hell broke lose again and I gave them up. I am not saying it will not help you, we are all a little different. One thing I will say is make sure the shots are at room temp, they hurt like hell if they are cold, You keep them in the refrigerator for storage so pull them out a few hours before use.

...get yourself a hobby...we'll call it "welding"...you can get a whole lot of welding O2 for 78 bucks.....and you can turn the dang flow to hurricane level if ya want...they really don't care what you are gonna do with it.... just DON'T say yur gonna breath it...if you feel more comfortable with a cover story tell 'em you need it for your dad, brother, mom, sister, S.O...whoever....as they are indisposed right now. this has the benefit of allowing any and all neophyte questions..... in bocca al lupo, jonathan

How very interesting! My daughter has a sleep disorder. She may be up for 22 hours and then crash for 12. And it is not 'regular' in the time of day. She does have better days and worse days. In addition, she has Ocular Migraines without pain. But the visual disturbances are severe. My husband 'dreams' all night. I will push for a sleep study when we get out of the current mess. I sleep rather light. I am essentially in 'mommy' mode' for and old dog and and old cat. So I expect that. I do have periods when I hear nothing and my husband hears the critters. Sleep deprivation I seem to cope with fairly well. In cycle, I get two hours of sleep per 24 hours most days. That, combined with a 6-8 month cycle, should have made me comatose. But, I just got really short tempered and carried on. I did however inform all that there would be no Santa the next time.

@EggMan I myself haven’t had much luck with many treatments I’ve tried, except for oxygen. That works great for aborts. But preventatives are where you want to go because you need to get them under control. I was given emgality as well. But I never took it. I feel like for me, it will cause more harm that good with clusters. I’ve heard people with migraines respond very well to Emgality. But clusters and migraines are so different. If you are open to trying different treatments, I would go for it. I am apprehensive. Kat

Kat if your oxygen is being delivered to you you will want to be good friends with the delivery person. Most likely they do not know how many tanks you are supposed to have so when you place your order for 3 tanks and only leave 2 tanks out for the exchange 9 times out of 10 they will just take the 2 tanks and leave you 3. You can build your stash like this over time so you do not worry about running out over a long holiday weekend or anything. Just stay on top or your refills and build up your stock pile of tanks slowly. you will get the hang of how much O2 you will need per hit and be able to keep your supply well stocked for when things take a turn for the worst. A few extra tanks and regulators will save your ass one weekend and you will be so happy you were prepared. Your other option would to be just ask the supplier for more tanks but I have ever know that to work out very well. I am glad to hear you had success...

Got it. Beer does the same for me! Missing my IPA’s right now. Thx for the reply.

Hi and welcome Nagroms! Mine taper off somewhat. The normal 4 per night becomes three and so on. I do not trust that I am out of cycle for a week with no hits. I do not try the beer test for a few more weeks. Big trigger! ATB!

Tony2, Please see the post right above yours for some verapamil-related info. Also, note that verapamil takes some time to get into your system, so you probably won't experience results for a while. Sometimes doctors prescribe a course of steroids to temporarily take away the pain while the verapamil is building up its effect. You probably want oxygen; you probably want to start the D3 regimen; probably you want to be taking Benadryl right now; you might want to consider busting; you might want an injectable sumatriptan . . . . This post addresses those things and some more: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/