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Hi Amy, I'm sorry this migraine board has been pretty inactive - I'm just a clusterhead responding here who has a general impression that while some CH treatments such as oxygen are ineffective for migraine, the CH alternatives mentioned below can work for migraine, and hopefully(?) vestibular migraine (it's sudden dropping sensation symptom in particular sounds horrible). Busting info is found at the blue "New Users" bar at top of page https://clusterbusters.org/forums/announcement/7-new-users-please-read-here-first/ And the D3 Regimen is known to be effective for migraine: https://clusterbusters.org/forums/topic/1308-d3-regimen/ These knuckleheads CH'ers @Dallas Denny, @CHfather, @Craigo are just a few of the CH regulars here who know a lot about this stuff, and who may have further input, so I'm tagging them, thinking they might be alerted to this topic that could otherwise be missed.

Thanks @Bejeeber. I would refer to the earlier posts I have shared on this migraine forum in respect my evolving understanding and views of both CH and migraine and the related alternative treatments as to the options that the OP may find worthy of her investigation; not much has changed from my side. @Amy R, welcome and glad to have you join. I would ask what alternative treatment your friend tried and found success with; whether using psychedelics or the vitamin D3 regimen, both popular alternative treatments you will find well discussed on the CH forums. It is only my personal view as a CH patient and someone who tries to read as much as I can about headache research that there is an evolving literature suggesting a correlation with gut health / microbial dysbiosis and migraine. Whether this is applicable to your migraine type I could not offer comment although I would say that the vitamin D3 regimen and psilocybin in more recent literature are both shown to shift the microbial landscape in the GI tract towards a less inflammatory profile, reducing systemic inflammatory burden and this may be a contributory pathway that correlates to some of the improvements we see in CH - the jury is still out. I would encourage you to check out the resources relating to the regimen either here or at www.vitamindregimen.com - download the guides or watch the videos and see if it is something that resonates with you to explore further. One thing that cannot hurt is having a baseline 25(OH)D vitamin D lab test to see what your level is. As for the approach of busting for migraine, I would only say that my recent experience using psilocybin for CH was both successful and an incredibly fruitful experience for my soul, and as to whether the emotional release of the medicine (only a 1g dose at 5 day intervals) had anything to do with its prophylaxis for my CH cycle is again not something I can offer any literature to support but certainly for me it felt that way. I anticipate to continue with this quarterly as a preventative strategy and spiritual / tension release alongside my continued commitment to staying on the vitamin D3 regimen year round for CH prevention and overall good health, fingers crossed. Another thing I have found recently to try and release tension and relax a bit more has been to do 2 or 3 TRE exercises per week in the evenings before bed. Strange, funky, odd - not something I would have normally tried had my odd sibling not suggested but weirdly and entirely relaxing! Every time we do these my wife is lights out within 5 or 10 minutes. I have found myself a little more relaxed so far. It is off topic to share this and I apologise but here is a video that explains it! https://www.youtube.com/watch?v=QoB9wpuO688 Hope that is of some value, I feel like I have drifted - and its very much a post from the lens of a CH patient not versed in your specific migraine type thus treat with caution and make of it what you will. Wishing you well on the journey of discovery, hoping you find your answers. Cheers, Craigo.

I have had migraines since I was about 8 years old. Sometimes status migrainous and a trip to the ER, or a hospital stay. In my 40s I developed cluster headaches. The first four years I had them I did not go anywhere, because much like my migraines, I can not wear anything including jewelry because everything feels like it is constricting o2 and blood flow. Also I can't stand light or motion. I had written about it in a journal where I simply referred to the headache as brain pain. A week long event. The first time I went to the hospital for the headaches they mistook it for Ocipital Neuralgia. I was admitted to the hospital and seen by many specialists. The Neurologist was able to diagnose it as Cluster Headaches. Since then I was on things like o2, Emgality, Injectable Sumatriptan, ketorolac, etc... Anyway my Dr at a pain clinic sent me to a headache specialist, pain doctor. That doctor gave me (probably misspelled) Sphenopalatine Gnangalion Blocks. A catheter injection thru the nostrils. He also gave me over time more than a few ketamin infusions. My headaches are in remission right now. I am truly blessed and thankful. I am not so disolusioned to believe that my headaches are gone. But it's been 5, 6, years without migraines or clusters. (Though this year I have had 3 migraines, not as bad as it could be. Here is to hoping that I get another year off, from clusters and status migrainous

Hey again there @jimmyogden sure thing. Again I am just a patient that read a few too many studies and followed Batch's work so please take my commentary as exactly that but... reference ranges vary slightly by laboratory, most common ones are: Serum calcium: 8.6 to 10.2 mg/dL (2.15 to 2.55 mmol/L). Your result was 9.0 mg/dL. Intact PTH: 15 to 65 pg/mL (some labs use 10 to 65 or 16 to 77 pg/mL). Yours - 47 pg/mL. If Pete were active I am confident he would say thats a green light to take another loading as your PTH is relatively high and your calcium on the lower side of mid-range. The risk of issue with a further loading dose is minimal and the benefit of further CH improvement is a goal worth aiming for IMHO. But even increasing to 25,000iu per day for some time I am sure you will see an improvement. I am remiss that I did not mention magnesium in my original reply albeit just made a presumption that you were getting the 400mg or as much as tolerable. Whilst some would say its used up in the conversion of vitamin D3 through its various forms, I know as much as to say it is a necessary cofactor in those enzymatic reactions but just like the starter motor in your car, it isn't consumed each time you turn over the engine but you do need sufficient amounts of magnesium as you increase the demand on the liver to convert the vitamin D3 into its storage form 25(OH)D - the form we measure in the lab test. Anyway good luck take care keep us posted.

I was on Verapamil for about 10 years, got all the way up to 1080 a day and it sucks. Tapering myself down little at a time and I am now off all together. The higher dose did help with the clusters but like CHfather said above the vitamin D3 along with some other things has helped me get to the same place without the side effects. I did it on my own and told the doctor at each visit I went to what I was dong. He was not a fan but as long as I took it slow he said it should be fine. Doctors go to school for years learning things, I have only watched a few hundred hours of MASH, almost the same thing...

Hi all, I wrote on this board for the first time after many years of just reading, during my most recent cycle, which started in March of 2026. I remember the day distinctly because it was Daylight Savings on Sunday, March 8, 2026. I quit drinking beer for the duration of the cycle a week later as the attacks intensified. April was the cruellest month. (Hat tip to T.S. Eliot.) Finally, in the first week of May, they began to taper off slowly. By the second full week of May, it was over. It was about nine weeks total, which is kind of average for me. This was the first time I had oxygen and I have to say, it was a game changer. Oxygen aborted some attacks completely, lessened the intensity of others, and gave me an alternative to medications. There were a couple of times in this cycle where I had an attack a short distance from home, so instead of taking a pill, I just rushed home and used oxygen and it ended the attacks. If you suffer from cluster headaches and you're not using oxygen, you should try it. Go to a doctor and get a prescription for medical oxygen. It is much easier to use than I thought it was. Lots of places will even deliver it to you. You have to be careful with oxygen, obviously, it is flammable. I did not even turn on my gas stove once for the entire time I had a tank in my home. I would microwave stuff, get takeout, or just make a sandwich or something. It was totally worth it. Anyway, I just wanted to drop a line and say thank you and that my most recent cycle is over. If you are in a cycle now, hang in there. It will end eventually. I hope it is soon. - Mike

Welcome Mike and congrats on ending your cycle and getting O2 to make the cycle easier!!! I must tell you though that you're carrying your oxygen safety concerns to the extreme an totally unnecessary! O2 is NOT flammable!! It's an oxidizer, and will enhance an existing fire, making it burn hotter and longer....if it's in your bedroom away from a fire source you'll be good...and if you're a smoker, wait a few after aborting before lighting up!! Or, just keep doing what you are if it makes ya comfortable! DD

Here's some basic oxygen info: You should have oxygen from a tank/cylinder/cannister, not a concentrator that makes O2 from room air. You should have either a non-rebreather mask or the mask that is made for people with CH, the “Cluster O2 Kit,” which you can buy here: http://www.clusterheadaches.com/ccp8/. The flow rate should be sufficient that the reservoir bag on your mask is always full when you are ready to inhale using a forceful breathing strategy. For some people, this is 15 liters per minute (lpm); for others it can be higher. Since medical O2 suppliers generally won’t provide a regulator that goes higher than 15 lpm, you might have to get your own regulator. More about regulators below. You want to have at least two tanks: one large one for home and one smaller one that you can take in the car, to the office, etc. Batch has recommended what he refers to as a “redneck” approach, in which hyperventilating with room air is alternated with using pure O2. Read more about that here: https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/ (There is some research that indicates that O2 is sometimes less effective when first used, and then gets better over time (pretty quickly). That's something to keep in mind, although many people get excellent relief from the beginning.) If you get a standard non-rebreather mask, there will probably be at least one little circle of small holes in it with no gasket behind it. Tape over that circle or cover it with your thumb when you inhale. Be sure you are pressing the mask firmly to your face; don't use the strap to hold it on (cut the strap). Be sure you are getting a good seal, particularly if you have facial hair. You want to be inhaling pure O2 from your mask, with no room air getting in. Cutting the strap will allow the mask to fall off if you fall asleep, so you don’t continue breathing O2. Stay on the O2 for 5-10 minutes after you have aborted the attack. For many people, this holds off future attacks. Many people find that drinking caffeine or some kind of energy beverage as they start on the O2 significantly improves their abort time. More on caffeine/energy beverages below. There is no documentation of people experiencing “rebound attacks” from using oxygen at proper levels. People find different ways of breathing that work best for them. I have mentioned Batch’s suggested hyperventilation strategy as one example. In general, you should be inhaling deeply as you begin, holding the air in your lungs for a second or two, and then deeply exhaling, to the extent of doing or nearly doing a "crunch" to force out as much air from your lungs as possible. Looking down toward your feet as you use the O2 has been shown to help with aborts. Regulators. The oxygen should be flowing into the reservoir bag on your mask at such a rate that you do not have to pause before your next inhale. 15 lpm doesn’t do that for everyone, so they buy different regulators. NOTE that medical O2 tanks take different types of regulators. The smaller tanks use CGA 870 regulators and the larger tanks use CGA 540 regulators (all welding O2 tanks, of any size, take CGA 540 regulators). You can buy higher-flow medical regulators of both types online at amazon, EBay, and elsewhere. Many people use welding regulators (which, as I have said, will only fit on larger medical tanks). These allow very high flows, and can be adjusted for the optimal flow rate for you. You also can find these at many places, including amazon and EBay. You can get them at welding supply stores, too, but they are likely to be much more expensive. You should be able to find a very acceptable one for about $40 or less. If you buy one, try to be sure that it comes with a barbed valve that will hold your mask tubing. You can also buy a very inexpensive barbed adapter at many hardware stores or online. (Some people have gotten mask tubing onto the non-barbed fitting that is standard for the welding reg -- I'm just not very "handy" in that way.) Also, be aware that unlike a medical regulator, a welding regulator has no lpm settings or gauge. So you have to fiddle with it a little to get the flow rate you want. This becomes very easy very quickly. One other thing you'll need if you buy a CGA 540 regulator: a large adjustable wrench to tighten the regulator onto the tank. A demand valve system supplies oxygen only when you inhale (or sometimes when you press a button to release the O2). People who have these swear by them: as much O2 as you need whenever you need it. They can sometimes be found on EBay. There are other sources for them, but I’m not sure what they are. Maybe someone will add that information. Some people have observed that for some reason when the O2 level in their tank is “low,” the O2 doesn’t work as effectively for aborting, or might not work at all. “Low” in some cases can be as much as a third of a tank remaining. Something to be aware of. Some notes about dealing with oxygen suppliers (repeating some of what was said above). To avoid frustration, it might be wise for you to contact your O2 supplier before their first delivery to make sure you are getting the right equipment. Many of them are not used to providing for people with CH. You want cylinders (tanks), not a concentrator. At the least, you want one large tank (an M tank or H tank) and one smaller tank for portability (an E tank). Multiple versions of each tank are better. You need some kind of stand, at least for your larger tank(s). You want regulators that go up to at least 15 liters per minute (lpm), and preferably up to 25 lpm. (I say "regulators," plural, because the large tanks and the smaller tanks take different types of regulators.) And you want a NON-REBREATHER mask. These are all things they should know to give you to treat CH, but often don’t. When the stuff is delivered, have the delivery person set it up for you and be sure it's working. Some people have found that the O2 delivery people are quite willing to provide them with extra tanks.