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Thanks so much spiny! There were a couple things I haven't heard about that you mentioned there one of which is caffeine! Interesting! And the vitamin D3 I have just read about in the last couple days for the first time so I will get onto that tomorrow. I cant believe all these years I have looked on Google for treatments and came across things on webmd and similar sites which provided minimal info on effective treatments but somehow never thought to look for forums and seemed to have missed clusterbusters during my research. I am so stoked to have found this site, woohoo!

Yes, I have a few for you Zaid. Welcome by the way!! Cold - as in inhale from the AC vent on the car. It helps many. Some will take an ice cube and hold it on the soft palate on the CH side while it melts for relief. Some swear by a cold shower. Others by hot, with a cold rinse. Sleep in a recliner with your head above your heart. I piled pillows all around and would just nod off. You wake sooner and the hits are not so bad. At least there I was assured of some sleep. Run a super hot 3-4"s of water in the tub and stick your feet into it or sit in it. As it cools, add more hot. I would apply a cool cloth to my head while doing this one and wind up in hot water to my waist by the time the hit passed. Sort of like opening up the blood vessels away from your head to reduce the flow to your head thingy. Release pressure for some. Caffeine!!! In coffee, energy drinks, whatever, just get some caffeine down. Always caffeine. I carry capsules of it and will take one or open one and toss the contents down if it hits hard and sudden. Chug a glass of water after. I strongly encourage you to look into the D3 Regimen ASAP. It is easy over the counter vitamins and they really can prevent a cycle! I use the 'original' recipe version: https://vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 I am sure that others will be able to add to this short list! Pills are normally so slow working that CHers use a nasal spray or injection. Pills are really for Migraine. And as you have found. Too much can be its' own problem, be it pill, spray or shot. The stuff is really not good for you. ATB!

...all our eyes over your shoulder mate....

I would think that Covid possibly depleted your D levels and opened the door for the cluster bunny. There have been a few reports of attacks after contracting Covid and I think one or two after the vax. I would bolster up your system with the D3 regimen and since you were recently sick maybe do a loading session first.

A great list from spiny! You might find some useful info in this post: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/. And take a look at the info you get when you click on "New Users - Please Read Here First" in the blue banner at the top of each page.

All going good. Talking a lot more ,but a lot of it doesn't really make sense at the moment . Bless her she thinks she's in Benidorm in Spain ,but then the next moment she knows that she is in hospital after an accident . She keeps asking for orange juice but she is still on a feeding tube so we can only let her have a spoon full at a time ,gonna check her throat tomorrow and may take feeding tube out . Also hoping to move her off critical ward tomorrow . My girl is so strong to have got this far but also down to all preyers sent from you guys

I don't know much about steroids other than you most likely don't want to continue them often. As far as breaking your cycle you might want to check out the blue ribbon at the top of each forum page "new users please read here first" sometimes we have to go outside of the typical treatments provided to us by Doctors/health care providers. As for your second question regarding the D3 regimen, I see no reason to discontinue it even when out of cycle, nothing wrong with a well boosted immune system! Lastly being declined health services even when willing to pay out of pocket does seem discriminatory. Maybe try and find a headache specialist center as they would be more likely to help you than even a high ranked neuro... On a final note I wonder what would happen if you just told them that you don't have insurance?

...spiny is entirely right that O2 suppliers must follow the script, BUT, it's important to note that YOU don't have to. get the script (hardest part) then crank that regulator (you bought your own on amazon to save on leasing, right?) to whatever works....key being reservoir bag full enough for full breath each time. for many that's 15-25+ lpm...some even higher. no one knows or cares what that is, find the flow that works for you. some find that starting high then lowering as the hit subsides an effective strategy and saves O2..... ...one of the saddest phrases in clusterville is "oxygen doesn't work for me"...when, in fact, it doesn't work at that pathetic flow....turn that baby up!! and experiment with various breathing techniques too. hyperventilation most frequently reported successful, but also slow breathe and breathe and hold...or a combo of all, can be the bliss.....

I agree CHF. They do have to follow the script from the doctor. They just get stuck on 'this is what we do' for COPD patients, not realizing the different needs of the Cluster patient. Once they 'get it' I too have found them to be very helpful.

Wow. Man that seems outrageous. It must have been a hell of a sticker shock moment when you checked out at GNC. I'll hope you may find equivalent stuff, cheaper, as you return to online ordering (or maybe Costco?).

Note that if you do get a larger tank, you will also need a different regulator. The smaller tanks, such as Es, use one type, but the larger M and H tanks have a different type. Of course, your supplier should know this, but it would be easy to mistakenly say "I already have a regulator." As you read in that long post, many people find that a higher-flow regulator works better for them, and that's something you'd want to get on your own. If your prescription was written in the standard way, it will call for something like up to 15 minutes of "oxygen therapy" at 15lpm. Your supplier can quickly calculate how fast you would go through a tank (15 liters per minute for 15 minutes = 225 liters, and an e tank holds about 680 liters, so that's three aborts) (you might actually get more aborts than that, but according to the prescription, that's what you would get), and that might make them more understanding about giving you something that matches the prescription they were given. Seems like it might even be a requirement that they do so. My two experiences talking with a supplier both turned out good once they understood the actual needs of a person with CH, in contrast to the e tank/cannula they are supplying to most of their patients, who are people with COPD conditions.

Talking a lot like that seems like it would have to be a really good sign! I would imagine the heavy pain killers etc. she must be receiving could be partly responsible for the lapses into the "Spain" thinking. And wow, possibly removing feeding tube and moving her off critical ward soon? One hurdle after another constantly being overcome. She does sound so strong indeed!

You can request a D3 blood test yourself, no doctor needed. I think the one here is Lab Corp. You just call and make the appointment and they will tell you how much it costs. You can begin the regimen without a test too. Then get tested a month in. You want to make sure that your D is above 80ng/ml. And check your calcium and PTH too. The regimen is easy to do and really works!!

....before switching an O2 provider that is at least somewhat cool with a CH patient, ask for more tanks. i kept 6 e's on hand at all times for a decade+ before my provider (Lincare) finally got m-60's.....yee-haw! also a good opportunity to educate them on the needs of a clusterhead....paying it forward for the next 'head that wanders in. if at all possible, pick up and deliver your own tanks.....they loved that even WAY before the current labor/supply shortage. a personal relationship with shop mgr and backroom tech goes a long way too....then you are a person instead of a file number. delivery drivers can be your best friend, treat 'em like the gold they are....sometimes they can find you a tank or 2 when "none exist"....or even a few extra.....

Thanks, everyone. You've given me a lot to go on (and important reassurances). @CHfather that resource is excellent--thanks a ton for compiling. I was skimping in part on the oxygen because I only have an E tank...my oxygen provider doesn't have any larger tanks available currently, which may mean that I need to find a new provider. I'm also beginning to prep for the D3 regimen. How important is it that I get a baseline for 25(OH)D before starting? Is there a specific blood test I ask for that will give me that value? Thanks again!

...sorry, that musta been a one off article, pre hit o2 breathing is not recognized in clusterville as a successful practice ('81 on my case). O2 is an abortive (along with injectable triptans, THE most effective of the traditional aborts. DMT and, for some, ketamine the newer and less studied but reportedly effective). O2 inhalation effects are transitory in nature..... the effects do not accumulate. it is not a preventive. no harm in trying, if for no other reason than to prove to yourself what effect it does (or sadly, doesn't have). i've always figured there is only one way to find out for yourself for any method discussed here...try it...in this case ya got nothing to lose but a little gas..... ...if the melatonin does not work (and you should experiment with dosage) diphenhydramine (Benadryl in USA) is worth a try...was my go to for allergy flare ups (which i suppose might have been cause for 1 hr wake ups, (discussed below)...but i didn't realize at the time)...Quercitin is another option others are more familiar with so i defer... ...for these nightly wake ups, which were only an occasional odd cycle for me when ECH....i sorta quote myself from previous, mostly applies "... staying on for a few mins after the hit aborted is frequently helpful. Also used to get hit hourly at night (in high cycle)...for whatever reason the O2 worked better than the usual 15 min (only 3- 5+)...but back again in an hour. What I did was: learned to wake up as soon as hit started (and no idea how I did that)...with my rig all set to go....just had to slap on mask and open valve. Left lights off, only swung knees off bed and stayed sitting, eyes closed, none of the usual movement, anger, angst, swearing...NO thoughts other than breathe-breathe-breathe-breathe (almost like a mantra). Never really woke up and could get back to sleep almost immediately. Usually got 5 or 6 hrs of sleep a night... which I was eternally grateful for because the alternative was NO sleep. Turned out my ATTITUDE about what was happening was just as important as the tools I was using...literally changed my life."

I'm sure this is not just a me thing.. But I ran out of a few supplements today which I'm normally very good about keeping on auto order. Made an emergency trip to GNC and 2 bottles of COq10, 2 bottles of curcumin cost me $295.00. I'm a comfortable person financially but this is unreal! At this rate it will be costing upwards of $1,200 every 2 months for me to continue the full Monte reg... I am just feeling defeated and like my health costs are going to rob me from any thing else I get to do with my funds.. I have Kaiser insurance ( a platnum plan ) but they refuse to cover any natural supplements?? I'm just angry at the moment. I suppose this makes me even more angry because I know how tight money is these days for not so comfortable folks! Sorry for the rant you guys I'm just peeved....