CHfather

Thanks for the information about stores, Anita. I just looked at a couple of DC-area stores, just out of curiosity (and because we sometimes need supplies in DC), and my only caution (aside from the fact that I am positive he will need a prescription to get oxygen) is that, gosh, things seem expensive. Regulators at the two places I looked at are about twice what you can get a quality regulator for online. Also, they seemed only to have regulators that go up to 15 lpm, and there's no point in buying a 15 lpm regulator at those prices when you can get a 25 lpm regulator for less. I couldn't tell whether these stores rent tanks, but the ones they seem to sell are also very expensive. The prices for cheap non-rebreather masks are fine. I'm not sure what he/you would be asking about, but I don't want the prices to scare him/you off. It seems to me that if he has a prescription, you'd want to get it filled through an oxygen supplier (Lincare, now that they have been properly educated about what people with CH need, does a good job). Among other things, it becomes the supplier's job to deliver the tanks to you. A tank of the proper size required for CH is very heavy and unwieldy. If you decide to consider the welding O2 route, I do know my way around DC-area suppliers, not that there's much to know except where they are. Regarding Benadryl, as Bob (and you) said, it's ridiculous. But as Bob said, histamines are implicated in some way in CH, and lately there have been a couple of people here who have found that a low histamine diet (a rigorous thing to do) has helped them a lot. See https://clusterbusters.org/forums/topic/4446-low-histamine-diet-worked-for-me/. Also, the creater of the D3 regimen (whose screen name is Batch) has found that it helps a lot to add Benadryl at times when the pollen count is high.

Anita, What "store" would he/you be going to? He can't really ask about regulators and particularly about masks at a welding supply store, and I don't think there are actual medical oxygen stores. Maybe there are--I've been wrong before. I guess we've led him to the water, and the rest is up to him, but he's making a huge mistake not to take our word for it. Many people with CH do resist trying new things, or trying things in new ways, because they have been disappointed so many times in the past and it's very crushing to feel that disappointment; but he really should be listening on this one.

This is beautiful news!!! I am so happy for you!

Would love to know who your DC-area neurologist is. How did the oxygen discussion with the neurologist go? If s/he didn't jump on getting the O2 thing right, I'm not as interested in getting a name. Regarding the D3, after a few days at 10,000IU to be sure he has no adverse reaction, your husband should probably start taking higher amounts right away. Does he have any recent blood-test results to show what his current D level is (that is part of any standard blood panel)?

Nice sleuthing job! Sounds like it's at least potentially diagnosable through imaging and testing (in contrast to CH), and treatable. And thank you for letting us know (and keeping us informed in the future).

If your O2 is prescribed, then your supplier is obligated to give you the bigger tanks. You want an "M" tank or an "H" tank (at least one; two is better). It's good to also have a smaller tank, usually an "E" tank, that you can take with you when you are away from home. (The larger and smaller tanks use different types of regulators, but each should go up to at least 15 lpm.) This is a very good mask to have: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit You would have to order this yourself; it's not something your O2 supplier is obligated to give you -- but of course they should give you a non-rebreather mask. When you get the mask from your supplier, if there are open holes on one side, with no gasket, block them with tape or with your thumb. You want as little room air as possible getting in with your O2 as you inhale. Cut off the strap (or at least don't use it) and press the mask firmly to your face. You can also get bigger oxygen tanks from a welding supply store. Note that these are not "medical-grade" tanks, although many, many people use them without issues. If you're going to go the welding route, let us know. But you shouldn't have to. Because trex pills don't work for most people, I'm curious about how you took them and how long the abort took. I'm also surprised that the pills worked and the Zomig didn't. You were using the Zomig to (try to) abort attacks, right -- not as an preventive? Strongly urge you to give the D3 regimen a try, too: https://clusterbusters.org/forums/topic/1308-d3-regimen/ Good results from that can reduce your reliance on the pharmas.

The vitamin D regimen has helped lots and lots of people: https://clusterbusters.org/forums/topic/1308-d3-regimen/ Many people find that they have to go to pretty high levels with the verapamil before it really helps: 960 mg/day, or in some cases even more. The sumatriptan injections can be split: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ This site was founded by people who had been through scores of prescribed meds (and there are scores of things that can be, and often are, thrown at CH) and found that using psychedelic substances, often at levels where there are no psychedelic effects at all, was the most effective way to end cycles and even prevent them. This approach is called "busting." You can learn about that, if you are interested, in the numbered files in the ClusterBuster Files section of the board. Let us know how the O2 goes. That can be a huge change, getting it right. If you have the wrong things, that is probably the fault of your oxygen provider. So if you have a prescription, that's probably who you should take it up with (unless the prescription was written wrong). As you might have read, to go beyond the basics to a higher-flow regulator and a top-quality mask, you'll probably have to buy those things on your own. Here's where you'd get the mask: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit His neurologist sounds like at least s/he knows the CH pharma basics (verap, O2, and triptans). That is surprisingly unusual. If s/he is also caring, that's another big plus.

The weird thing about this, given our list of triggers at another thread, is that the spice packet is filled with MSG, which is a wicked trigger for many. Or maybe you're talking about a different brand: I'm looking at Maruchan Hot Chili Flavor Ramen. Or I suppose maybe it's possible that the MSG isn't in the spice packet, though I don't know where else it would be.

Thanks, BB'. Just for clarity in the final list . . . do you means baths at any time?

I'm a supporter, too, I have found that if I kept quiet and unemotional I am permitted to stay nearby during an attack so I can get anything that is wanted or needed. This isn't true for everyone. Or I could check in from time to time. It is completely agonizing to be so helpless when there's so much suffering. It troubles me when you write about taking him to the hospital. To me, that means that he might not be working with all the resources he could to manage his CH. Can you talk about what he uses to treat it? How quickly does the oxygen work (is it a high-flow system with a top-quality mask)? It's possible that we might have some advice that will help. Busting is one option, but things like the D3 regimen, energy drinks/shots, melatonin, watching out for triggers, and even the feet in hot bathwater approach have all helped some or many people.

I'm happy to make categories. I think we'd want an "odors" category, too -- there are a lot of them. Of course, odors are different from the other categories in that while you can generally choose what foods you eat and what events you participate in and even to a large extent what meds you take, the odors are often kind of imposed on you by circumstances. With the shorter list I had created as a beginning, I didn't really think categories were necessary -- you could read the whole list in a minute anyway -- but the more we get, the more inclined I am toward categories.

SOS, are you splitting your Imitrex doses? https://clusterbusters.org/forums/topic/2446-extending-imitrex/

J, I was going to ask you this in another thread, but didn't. Have you found that the full 8-ounce energy drinks work better for you than the smaller energy shots, or are the big drinks the only kind you have ever used? Is it possible that you made the choice of drinks over shots because the drinks have less caffeine than the shots, and they work, and you don't see any reason to get more caffeine than you need? I ask this because based on observed and reported experience I typically recommend the shots (more caffeine; easier to get down quickly) over the drinks, but maybe I'm missing an important consideration.

Yes, agreed about grouping similar ones. Thanks. I've been looking forward to spiny's input on that specific one.

Thanks, Jon!

On another thread, we were discussing triggers. We thought that maybe it would be valuable to compile a list and post it in the ClusterBuster Files section. I have started this list by adding things that I remember to an initial list provided by ThatHurtsMyHead. I would appreciate any corrections, additions, or clarifications so we can make a list that’s as complete as possible. If you can think of a better way of organizing it, please suggest that. This is just a start. Not all of these things are triggers for everyone. Even alcoholic drinks, probably the most common triggers, don’t affect everyone. And for some people, some alcoholic drinks are triggers and some aren’t. So the purpose of this list is to help people think about what their own triggers might be, so that they don’t suffer needlessly from not recognizing them. Airplane travel Alcoholic drinks Altitude: high-altitude locations; travel from high altitude locations to lower ones and from lower ones to higher ones Amyl nitrate (used medically to treat heart diseases such as angina, and also used as an inhalant drug, often called a “popper,†that induces a brief euphoric state) BBQ Sauce Cheeses that are fermented (blue, brie, american, swiss etc.) Chocolate Epinephrine (anesthetic used often in dental work) Erectile dysfunction medications (Viagra, Cialis) Exercise: strenuous exercise Flour, bleached white (white bread, cake etc.) Marijuana MSG (monosodium glutamate, a food additive) Nitrates and nitrites (often added to processed meats, such as bacon, hot dogs, jerky, and luncheon meats) Nitroglycerine Odors: perfumes; gasoline; paint; solvents Pollen Sleep: irregular sleep schedules; napping Smoke Stress Sugar: high-sugar foods Weather: Barometric pressure changes Weather: High temperatures

akbars, for whatever it might be worth as you look for an answer, which I hope you find, there is for all practical purposes no such thing as a "cluster migraine." The are cluster headaches and there are migraines, but a proper neurologist or other diagnostician can differentiate one from the other. I'm only telling you that so you don't waste any time looking for something that doesn't exist -- I know it's not in any way a helpful answer to your questions. Have you tried any migraine meds? Verapamil as a possible preventive, for example, or maybe sumatriptan to try to abort them? I guess it seems to me that some doc would at least have tried them. I don't think you have a hemicrania, which is a kind of cluster headache "lookalike," but the drug Indomethacin treats that condition very well, so it would be easy to try.

To answer your question, Closet', yes, welding regs are easy to set, but there's no specific lpm setting or lpm gauge. Remember that what you want is the flow rate that will keep your reservoir bag filled so you don't have to wait to inhale. Technically, that could as well be 18 lpm or 23 or 29 lpm as 15 or 20 or 25. With the welding reg, you just turn the valve on the regulator until you get the flow you want. You learn where that is very quickly. I have never heard of anyone having a problem with this after the first or second use. Not saying it never happens, just saying that I've never heard of it, and I can't imagine it being a problem. As J says, you will want a different regulator depending on the size and nature of your tank. All welding tanks take CGA540 regulators. Smaller medical tanks take CGA870; larger medical tanks use the 870. I wish I could figure out to insert photos here. Here's an 870. (Note that this is also less expensive overall than the eBay ones, if you have Amazon Prime (and it will also get to you faster): https://www.amazon.com/Medline-HCS8725M-Oxygen-Regulator-Latex/dp/B00BLQKKQQ/ref=sr_1_fkmr0_1?ie=UTF8&qid=1471481724&sr=8-1-fkmr0&keywords=25+lpm+oxygen+regulator+cga540 And here's a 540: https://www.amazon.com/Medline-HCS5408M-Best-Valued-Regulators-Connector/dp/B00BLQKI86/ref=pd_sim_sbs_121_1?ie=UTF8&psc=1&refRID=2JTKAM6B6EC2WD85W4BZ The advantage of a welding regulator over buying a 25lpm medical regulator comes if it turns out that you need, or benefit from, a flow rate higher than 25 lpm. As Racer says above, the medical reg will go way up there in terms of flow rate. Remember that these only come in 540CGA, so it will only fit a larger medical O2 tank (or any welding tank). There are a few of them at amazon, reasonably priced. Here's one: https://www.amazon.com/IMAGE%C2%AE-Welding-Welder-Regulator-Cutting/dp/B00JP9WIF2/ref=sr_1_1?s=industrial&ie=UTF8&qid=1471482716&sr=1-1&keywords=oxygen+welding+regulator

Doesn't sound much like CH. Does sound kind of like ocular migraine, except that in that the vision loss is only in one eye. http://www.webmd.com/migraines-headaches/guide/ocular-migraine-basics My advice is to get to a headache center ASAP.

You're absolutely right, I should know that triggers aren't obvious. Some of yours are even surprising to me, and I tend to keep up pretty well on this stuff. For many years I had serious attacks of pancreatitis (a very painful SOB), but no doctor could diagnose the reason. They all decided that it was "idiopathic" -- no known cause. Then one day after getting attacks after eating Chinese food, it dawned on me that MSG must be causing the attacks. I was right, and have only had them since when MSG was in some food where I wouldn't have expected. You have convinced me that maybe we should create a list of possible triggers in the CB Files section, and that we should refer people to that list in the same way that we refer them to treatment things such as the D3 regimen. As you say, that could make a big difference for some people. I feel like at some point there was a thread about triggers, which also include some smells (perfume, gasoline). I'll look for that later, and maybe start a new thread to see what gets added. I still think my general point to pro2see is valid: that managing diet, sleep, and stress will only get you so far, and pro2see really should be looking at other treatments, too.

Great post from Jon there! Please heed what he says, particularly about oxygen!!! It will work for you, I would almost guarantee it, if you get a high-flow system with a good mask. And he's right about the triptans: injectable is best; nasal spray is second; pills are far, far behind. Usually (as Jon says) prednisone is administered as a taper, with one high dose of 50 or 60mg and then rapidly decreasing amounts. The prednisone will mess you up in the long run more than the triptans -- you need to be really careful with that. Everything Jon says is correct. Here's info about the D3 regimen that he mentions: https://clusterbusters.org/forums/topic/1308-d3-regimen/ Try an energy shot, such as 5-Hour Energy, just as you feel the attack coming on. That helps a lot of people reduce the severity of the attacks. Some people find that putting their feet into a bathtub with water as hot as they can stand will stop an attack or reduce its severity. Melatonin at night, starting at 10mg, is effective for some people. Regarding "busting" -- treating CH with psychedelic drugs -- you can read a lot about that in the numbered files in the ClusterBuster Files section of this board. There really aren't any non-hallucinogenic magic mushrooms. Some people find they can take low enough doses not to have a serious "trip" and still treat their CH, but with mushrooms, you're gonna trip some. And I'm afraid no one here can tell you how to get them or provide them to you, since they are illegal. A substance that is legal to buy and to possess, and which does not cause tripping at the level used to treat CH, is rivea corymbosa seeds. They are illegal to "process" or consume. You can read about them in the numbered file about LSA. You can buy them from a Canadian supplier. But we're getting ahead of ourselves, since you cannot be using triptans when you do "busting" (see the file on "Playing Well Together"). I'm imagining that would be hard for you (even though those pills probably aren't really helping you much), which is why getting oxygen working for you as an abortive is very important.

J, I appreciate these clarifications, and I'm very glad you have made them available to pro2see. But really, 90 percent? I guess it depends on what the baseline is -- If you're regularly consuming things that are triggers, you'll have a whole lot of attacks, and so I can see that if you stop consuming them, your attacks might go way down. But once you're at some trigger-free baseline, I have seen only a few reports of diet having a significant effect. As I mentioned, lately two people have said that a low-histamine diet has helped them a lot. (My daughter tried it for three weeks and it didn't help her at all.) There have been a couple of other reports from time to time of effective dietary treatments. Unfortunately, those people never seem to come back to tell us of what they have subsequently learned. We know that just "eating better," or even being full-on vegetarian or vegan, seems to have practically no effect. I guess my larger point to pro2see was that, sure, you should optimize all lifestyle things that can affect your CH, but you're still going to get attacks. pro2see seems to think that the side effects of meds would be worse than his/her attacks, and as a result s/he doesn't seem to have been very ambitious about pursuing meds, whether pharma meds or non-pharma treatments. I don't know what pro2see's attacks are like, but I think most people would make a different trade-off, minimizing side effects but treating/preventing attacks.

Interesting that it's 10mg for CH and 3mg for migraine. Not that either amount is really definitive. http://www.docguide.com/role-melatonin-treatment-primary-headache-disorders?tsid=5 The Role of Melatonin in the Treatment of Primary Headache Disorders; Gelfand A, Goadsby P; Headache (Jun 2016) OBJECTIVE To provide a summary of knowledge about the use of melatonin in the treatment of primary headache disorders. BACKGROUND Melatonin is secreted by the pineal gland; its production is regulated by the hypothalamus and increases during periods of darkness. METHODS We undertook a narrative review of the literature on the role of melatonin in the treatment of primary headache disorders. RESULTS There are randomized placebo-controlled trials examining melatonin for preventive treatment of migraine and cluster headache. For cluster headache, melatonin 10 mg was superior to placebo. For migraine, a randomized placebo-controlled trial of melatonin 3 mg (immediate release) was positive, though an underpowered trial of melatonin 2 mg (sustained release) was negative. Uncontrolled studies, case series, and case reports cover melatonin's role in treating tension-type headache, hypnic headache, hemicrania continua, SUNCT/SUNA and primary stabbing headache. CONCLUSIONS Melatonin may be effective in treating several primary headache disorders, particularly cluster headache and migraine. Future research should focus on elucidating the underlying mechanisms of benefit of melatonin in different headache disorders, as well as clarifying optimal dosing and formulation.

"Foolish" might be too strong of a word. But lots and lots of people have tried diet, sleep, and stress reduction strategies without very good results (for the most part -- there have been some people who report that one diet or another helps them; most recently, a low-histamine diet seems to be helping some people). The three treatments with the lowest side effects are probably OXYGEN (zero side effects, and extremely effective for aborting an attack), D3, and busting. Have you read about busting in the ClusterBuster Files section (the numbered files)? After that, we might get into the murky category of what we mean by "side effects," and maybe we'd say that melatonin and energy drinks don't have many immediately observable side effects.

That's the one. I don't know the answer to your question, though.