CHfather

So, one thing that is widely accepted as true here is that triptans make cycles worse and longer. Seems like that is surely happening with you. Injections and nasal sprays are the most efficient forms; pills don't do much. But no matter what form the triptans are in -- they are highly likely to be making things worse. What you want -- what you need -- is oxygen!!! That is the game changer (because among other things it reduces your need for triptans). How much verapamil are you taking, and in what form (immediate release or extended release)? Many non-fans of verap here, but there's no doubt it can help some -- in the right form (immediate release) and at the right levels, which are usually considerably higher than doctors prescribe, and which have to be gradually worked up to with testing to be sure there are no bad effects. Verapamil takes time to get into your system and start working. A course of prednisone is often prescribed when verap is first started, because the prednisone can hold off some or all of the pain while the verapamil takes effect. Not a standard prednisone "dose pack" (although that helps some) -- a longer and stronger treatment. For an overview of things you can do, I would very strongly suggest you read this post and the replies: Basic non-busting information - ClusterBuster Files - ClusterBusters In addition to oxygen, which should be the first thing a doctor prescribes, most folks here are primarily committed to two things that your doctor probably won't know about: (1) "busting," which is using psychedelics to stop CH cycles and prevent new ones (you can read busting basics at the very end of that post I just linked to), and (2) the vitamin D3 regimen, which has helped many hundreds, if not thousands, of people with CH to reduce and avoid cycles (there's a link to it within that linked post above). Of course, there are also the newer CGRP medications (Emglaity and others) that help some people. In short, there are lots and lots of things you probably have not done that will make your prevention and treatment of CH much more effective!!!

Jimmy, Jimmy, Jimmy ..... So sorry to see you back. Why naratriptan? It's a migraine medicine, and I think it's a pill (not an injection or a nasal spray). It is unlikely to help you. But as it's a triptan, you can't expect to bust successfully while taking it. (I'm a little confused about what you're saying. Maxalt is not naratriptan; it's rizatriptan. It also blocks busting.) Please read about O2 here: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ And note this: 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.

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.

There's this, with Gammacore. The problem has been (and probably still is) that it is very expensive: Hemicrania Continua and Paroxysmal Hemicrania Treatment. I would PM Batch (his handle here is xxx) and ask him whether he has any experience with vitamin D3 and hemicranias. There are other alternatives. I'd google [new treatments for hemicrania] or something like that.

Many (but not all) people find that staying on the O2 (often at a lower flow rate) for 5-10 minutes after an attach has been aborted will help reduce the number of subsequent attacks. If you have the M tank that is about 3 feet tall, it has a capacity of 3455 liters. That would mean that theoretically it would last about four hours at 15 liters per minute. Usually there's a point when even if there's still O2 in the tank, it just isn't getting the job done, so figure about 3 hours/M tank at 15 lpm. You should be getting aborts in less than ten minutes. Some research shows that abort times are longer when people are just getting started with O2. Many people like to use just the mouthpiece with the ClusterO2 Kit. A typical breathing strategy is to start with a deep exhale, then a full inhale, brief hold, big full exhale, and so on. Others find other methods that work best for them. The flow rate you use should be such that the bag on your mask is always full when you are ready for your next inhale.

It might be possible that a big medical O2 supply company would be more likely to have big tanks, not just e tanks. I'm pretty sure that Airgas and Lincare serve @Clairmon's part of Virginia with medical O2, and Airgas will also have welding O2.

@Clairmon A prescription should read something like "Oxygen therapy for cluster headache: Up to 25minutes of 15 liters/minute with nonrebreather mask." (A doctor would probably use some abbreviations here.) It is usually then faxed to a company that supplies medical oxygen. You would then call that company and make sure they are bringing you the right stuff (big tanks, regulator, NRB mask). You will probably want to switch out the mask and regulator at some point. Writeup here about welding O2: Notes about welding O2 - ClusterBuster Files - ClusterBusters

The two neurologists we saw in DC both misdiagnosed my daughter's CH, and when it was diagnosed (by us), the second one mistreated it. So no advice, really. People generally recommend that a headache center is going to be your best bet, and I'm sure Georgetown and Johns Hopkins (and maybe GW) have them. There are some things that sound like you might have a hemicrania. Oxygen and triptans not working, for example (though I can't say about actually making things worse), and the constant pain. So it's worth checking out, but typically hemicrania is a CH lookalike, and you don't have typical CH symptoms. Indomethacin is the only diagnostic for hemicrania. If it works, you have it; if it doesn't you don't. BUT be sure you get a proper course of indo -- you seem good at googling (or AI-ing), so look up something like "What is the correct initial dosage of Indomethacin for hemicrania?" ChatGPT gives the answer below, which I think is correct, but I would look around to make sure -- and not trust a neurologist to get it right (even though s/he has a book or an online resource that will tell him/her what's right). "25 mg by mouth three times daily, taken with food. That gives a starting total of 75 mg/day. If symptoms do not improve clearly within a few days (sometimes even within 24–48 hours), the prescribing clinician often increases the dose—commonly to 50 mg three times daily, and sometimes higher (75 mg x 3) for a short diagnostic trial." Busting and hemicrania. From what I have seen here, it typically helps for a day or two or maybe a iittle longer, but then wears off, so people with hemicranias have to do a lot of busting to keep it at bay. But maybe I'm just not remembering other situations in which the results from a more standard protocol were good, as Denny described. That doggone D3 regimen sure seems to help a lot of "headache" conditions. I'd definitely keep doing that.

I have no real thoughts about what you wrote ... just thinking that in case you get in a pinch, the ship's medical staff would probably have some O2, so it might be worth it to investigate/make friends??

Thank you for this post. I think there have been a couple of reports in the past about energy drinks/shots making things worse .... sorry that happened to you.

thank you for posting this.

good for you!!!!!!!!!!! but to the extent you can, keep pushing for a big tank -- an M tank, or an H tank. they ought to have them, and it'll save them a lot of trouble if you have one. aside from e tanks being small, it is not unusual for the effectiveness of O2 to go down when the amount of O2 in the tank reaches some level -- half full; one-third full -- so you can be getting less useful O2 than the tank holds. You're going to be calling them a lot (as i think others have mentioned, the O2 delivery person should be your new best friend, and you might get some extra or bigger tanks from them). i'm not sure what a "travel tank" would be, but anything smaller than an e is hardly worth it. e is plenty portable. with your current mask, block the open holes on the front of the mask with tape, or with your thumb as you inhale, so you're keeping room air out. cut the strap -- you don't want to fall asleep with the mask on your face. press firmly to your face so there are no leaks. normally, the recommendation is to stay on the O2 for some time after the attack has been stopped, so that you might prevent subsequent attacks. five minutes, some say; others say for roughly as long as it took you to stop the attack. many people turn down the regulator as they do this. you should do this, but with an e tank you hate seeing the tank contents go down.

I remember @jon019 saying that his doctor gave him a certificate of medical necessity, or something like that, which helped clear the path with insurance. So the argument here is that contaminants will mess up a welding job and so suppliers are not going to let those tanks have anything but pure O2 in them. The second argument is that people here have been using welding O2 for ten, fifteen years or more without issues. It's not clear to me what the answer was, but if it was just "we don’t supply oxygen to cluster headache patients" and not the insurance thing, it could be that you were reaching someone on the industrial gas (welding) side rather than the medical side. The first time I tried to get welding O2, at a place in Northern Virginia, that's what I was told. So you learn not to ask for it in that way. 15 years ago, we got medical O2 in D.C. from Lincare. No insurance hassles, but it did require some educating about what a person with CH needs. Of course, I don't know what things are like today.

You didn't list the D3 regimen, which has been a great preventive for hundreds, even thousands, of people with CH. Might just be another one you forgot to include, but just in case: D3 regimen - ClusterBuster Files - ClusterBusters Thanks for the heads-up on Brekiya. Interesting!!

It's great that you got that relief, Mike. Do not let it lull you into letting up on getting oxygen! For a lot of people, the effectiveness of energy beverages tends to decline with multiple uses. (Incidentally, the smaller "energy shots," such as 5-Hour Energy, are easier to get down fast and have as much of the CH-fighting ingredients as the larger drinks (more of those ingredients, actually). Also, at least one person here has had success with V-8 energy drinks, which might be a touch healthier.) Many people would be surprised that your triptan pill helps at all (it is reasoned that they take too long to get into the bloodstream). If your attacks are predictable, some people will take the pill before the attack hits. There are a lot of other things I think you might benefit from knowing. The D3 regimen, for exampIe, and busting. I think you might benefit from reading this: Basic non-busting information - ClusterBuster Files - ClusterBusters

Thank you, fingers and toes crossed for you, and please do update.

One thing that many people have noticed is that when the tank gets below a certain level (half-full for some, one-third full for others), O2 loses effectiveness. With a regulator that goes above your usual level, you can increase the lpm to compensate for this. You didn't answer about D3 and busting (perfectly fine), but I'll just repeat that they make a big difference.

@Trent, I remember from some years back that you gave a lot of thought to optimizing your O2 usage, and you were dealing with some Canadian restrictions on equipment. An average attack duration of 44 minutes seems too long, and a total O2 usage of 45 minutes over 16 attacks seems quite low, so I'm curious about what's going on, and of course I am also curious about whether you are doing the D3 regimen or busting, both of which typically reduce attack durations. Since this isn't really the subject of these posts and you aren't asking for any advice, you don't have any obligation at all to answer . . . It just makes me curious about whether there's something that could reduce those longer attacks.

80/day is very unlikely to benefit you, and I wouldn't hope for much from 160/day, either. (240/day is pretty much the most standard starting dose, increased over time as needed.) It seems that immediate release works better than extended release. Also, it takes time for verap to get into your system and help at all. Could be that your doc is starting with extreme caution for some good reason, of course. Often, a course of prednisone is recommended to at least hold off the pain while the verap is settling in. But, really, the D3 regimen is a better preventive for most people than verap, with a lot fewer potential side effects. (see attached) What else are you using for your CH now? You might want to look at this: Basic non-busting information - ClusterBuster Files - ClusterBusters. Also, I have attached an older summary of CH treatment options. It's old enough that it doesn't mention the newer CGRP drugs, but I think what's there is still mostly valid enough as a point of reference. Quick Start Guide - Sept 2023.pdf GoadsbyCluster.pdf

What a great post. Thank you. I'm looking forward to perhaps a follow-up from @Craigo This seems possibly valid to me. I'm just wondering how you reached the conclusion, and why "undiagnosed." In Rozen's big 2011 study of people with CH, he asked about other medical conditions that people with CH have, but it doesn't seem that ADHD was among the possible answers. Someone at ClusterBusters might know whether another big study is planned (there was another one, after Rozen's, by Larry Schor), since CB is a source for research subjects. It seems like this is a question that might be asked (at least about diagnosed ADHD). Also, regarding dopamine, I admit to not having studied the two reports I posted in the research/scientific news section below, but I guess I could imagine that increased dopamine production accounts in part for the effect of D3 on mood.

Two studies (bold and italics are added by me) 2024: The effect of vitamin D supplementation on depression: a systematic review and dose–response meta-analysis of randomized controlled trials | Psychological Medicine | Cambridge Core The impact of vitamin D supplementation on depressive symptoms remains uncertain. This study aimed to investigate the dose-dependent effects of vitamin D supplementation on depressive and anxiety symptoms in adults. We systematically searched PubMed, Scopus, and Web of Science up to December 2022 to identify randomized controlled trials evaluating the effects of vitamin D3 supplementation on depression and anxiety symptoms in adults. Using a random-effects model, we calculated the standardized mean difference (SMD) for each 1000 IU/day vitamin D3 supplementation. The GRADE tool assessed the certainty of evidence. Our analysis included 31 trials with 24189 participants. Each 1000 IU/day vitamin D3 supplementation slightly reduced depressive symptoms in individuals with and without depression (SMD: −0.32, 95% CI −0.43 to −0.22; GEADE = moderate). The effect was more pronounced in those with depressive symptoms (SMD: −0.57, 95% CI −0.69 to −0.44; n = 15). The greatest reduction occurred at 8000 IU/day (SMD: −2.04, 95% CI −3.77 to −0.31). Trials with follow-up ⩽8 weeks (SMD: −0.45, 95% CI −0.70 to −0.20; n = 8) and 8 to ⩽24 weeks (SMD: −0.47, 95% CI −0.70 to −0.24; n = 15) showed stronger effects compared to those lasting 24 to ⩽52 weeks (SMD: −0.13, 95% CI −0.28 to 0.02; n = 5) or longer than 52 weeks (SMD: 0.14, 95% CI −0.16 to 0.44; n = 3) (p group difference <0.001). Vitamin D3 supplementation had no significant effects on anxiety symptoms. In summary, this study suggests that vitamin D3 supplementation may effectively reduce depressive symptoms in short term. Further high-quality trials are warranted for a conclusive assessment of its impact on anxiety. 2025: https://www.frontiersin.org/journals/psychiatry/articles/10.3389/fpsyt.2025.1622796/full Our findings indicate that vitamin D supplementation is associated with a moderate but statistically significant improvement in depressive symptoms..... This meta-analysis demonstrates that vitamin D supplementation significantly alleviates depressive symptoms (SMD = -0.36), particularly in subgroups with baseline deficiency (<20 ng/mL) and comorbid chronic inflammatory conditions.

He might be more likely to see this if we include his handle here, @xxx.

I am getting better at turning to AI for questions like this. I asked ChatGPT (which probably isn't even the best AI engine for this kind of thing): "What does this mean: In the forward MR analysis, 11 CSF metabolites were significantly associated with CH risk (P<0.05). The strongest associations were observed for orotate (β = 0.53, 95% CI: 0.23–0.82, P = 0.0006), betaine (β = 0.47, 95% CI: 0.16–0.79, P = 0.0035), and 5-oxoproline (β = 0.57, 95% CI: 0.17–0.97, P = 0.0053). In the reverse MR analysis, eight metabolites, including lysine (β = 0.015, P = 0.029) and kynurenine (β = 0.025, P = 0.020), were nominally associated with genetic liability to CH. Sensitivity analyses showed no evidence of directional pleiotropy or heterogeneity (all P > 0.05). This bidirectional MR study provides the first genetic evidence linking central metabolic alterations to CH susceptibility. While these results highlight potential metabolic biomarkers and mechanistic pathways, the findings remain preliminary due to modest statistical power and should be replicated in larger and ethnically diverse cohorts." In the blink of an eye, the answer that came was (formatting is much clearer in the Chat version; I have just pasted it here as plain text). NOTE that at the end it offers to go deeper: Maybe some of your other questions could be asked there. Well, I tried pasting it. I get an error message that says, The value entered includes a character that is not allowed such as an Emoji. Since I have no idea what that character might be, I guess you'll have to do the exercise yourself. I don't think you will be disappointed.

@Ange72, it might be worth trying oxygen, because sometimes it works or at least helps, but as I'm sure you know, that's rare with hemicranias. Similarly, triptans rarely work, but they could be worth trying. We've had some people here with hemicranias mention getting some relief from oxygen and/or triptan injections. Busting sometimes provides some temporary relief (a day or maybe two). Your experience with indo side effects is sadly typical. Other possible treatments for PH that are typically listed are other NSAIDs (aspirin, naproxen and diclofenac); COX-2 inhibitors (celecoxib and rofecoxib); and calcium channel blockers (verapamil and flunarizine). I have read lately that vagus nerve stimulation is helping with hemocranias: one such device is the GammaCore. But really hoping the keto, and D regimen, will make a difference for you. You mention in your post that the headaches are "constant." Did you mean that you have some kind of background pain all day, with eruptions of greater pain, or did you just mean by "constant" that you have many of them every day? (I realize that I might sound here like I might be a doctor or some kind of expert. I'm just reporting what I've seen here and read.)

The whole article can be read here. It's darn fascinating, although the authors are clear that practical applications are likely pretty far off. Advancements-in-Intranasal-Delivery-of-Drugs-for-Cluster-Headache-Treatment-using-Cubosome-Based-Nanocarriers-A-Review.pdf There are a lot more articles about the same technology but different, non-CH, applications here: Advancements in Intranasal Delivery of Drugs for... - Google Scholar Seems to be very much an India-based thing, judging by the various authors of the papers.