CHfather

One of the two oxygen experts I wrote to has responded. The following is from Batch, who in addition to being an oxygen expert and all-around great guy is also the creater and popularizer of the D3 regimen. You'll see why I mention that when you read his reply. I have shortened it a little bit because there are some details about a new approach to using O2 that Batch has developed, which your husband doesn't currently have the equipment for. I know that everyone who has been following this thread or participating in it is deeply disappointed along with you. >>>>I read through all the posts in this thread and have some suggestions. 1. Try to get the gent in to see his PCP for the 25(OH)D and vitamin B12 lab tests. It is almost axiomatic he's deficient in both. If the lab tests are going to take more than a couple days, have him start the anti-inflammatory regimen with 10,000 IU/day vitamin D3 on the first day. Then, if there are no reactions to any of the supplements, start the 2-Week loading schedule. When complete, drop back to a vitamin D3 maintenance dose of 10,000 IU/day plus all the other cofactors for at least two weeks then go in for lab tests of serum 25(OH)D, total calcium and PTH. Even if there isn't a complete favorable response to the anti-inflammatory regimen in the first week, this regimen should result in more effective aborts with oxygen therapy with shorter abort times. 2. If there's no response to the anti-inflammatory regimen after a week to 10 days, start a 7 to 10 day course of Benadryl (Diphenhydramine HCL). 25 mg in the morning and 25 mg before bed is a very safe dose. Just tell the gent not to drive when taking Benadryl (Dipenhydramine HCL) as it will make him drowsy. If he needs to drive, have him take 50 mg when home for the day and done driving. It will be just as effective. Diphenhydramine is a first-generation antihistamine that crosses the blood brain barrier to block H1 histamine receptors on neurons throughout the brain including the hypothalamus and in particular, the trigeminal ganglia where calcitionin gene-related peptide (CGRP) is produced. The rational for Benadryl (Diphenhydramine HCL) is he may be experiencing an allergic reaction. Allergic reactions create a flood of histamine that hits the trigeminal ganglia and results in the release of CGRP. CGRP results in neurovascular inflammation and the pain associated with CH. CGRP has been found in several studies to be elevated during the pain phase of migraine and cluster headache... It gets worse... CGRP in turn triggers the release of more histamine so you end up in a circular self-sustaining perfect storm cluster headache that continues until the chemical reactants are consumed which ends the CH attack... for now... I am convinced a histamine reaction results in the CHer being refractory to just about all methods of CH intervention including oxygen therapy and vitamin D3. 3. Oxygen therapy works most effectively if used with hyperventilation. We proved that with the oxygen demand valve study where 7 CHers from CH.com used flow rates that support hyperventilation either with an oxygen demand valve or with a 0 to 60 liter/minute regulator and Cluster O2 kit at flow rates around 40 liters/minute.

Wow, what a terrible thing. I can't imagine what could have gone wrong. When you say "it kept getting worse" and you're now at the hospital, do you mean it got worse faster or more strongly than his typical attacks? That's something I've never heard of; in fact, I've never heard of properly used oxygen not having some effect on a CH, even if it didn't abort the attack. The reservoir bag on the mask was emptying as he inhaled and filling properly after he had inhaled? The link you put in doesn't work, but I imagine you're talking about a hyperventilation-type approach? Did he do some kind of caffeine/energy drink just before? Did he get on it as soon as he felt the attack coming on? (I'm just trying to be sure we know all the variables.) I'm going to PM this to a couple of experts to see what they might have to say. So sorry!!!!!!!!!!!!!

You can buy a regulator at a welding O2 store, but there are two issues. One is that they generally very expensive to buy at those stores, and the other is that those regulators usually don't have the barbed connector that you attach your mask tubing to. You can buy an adapter with a barbed end at a hardware store, or you can fuss with the tubing and kind of jam it on, but you're better off getting a regulator that already has an adapter and that will cost considerably less. Here are two: https://www.amazon.com/IMAGE%C2%AE-Welding-Welder-Regulator-Cutting/dp/B00JP9WIF2/ref=sr_1_1?s=industrial&ie=UTF8&qid=1471881287&sr=1-1&keywords=welding+oxygen+regulator This is the one most people buy. There might even be a Harbor Freight store near you. http://www.harborfreight.com/catalogsearch/result?q=oxygen+regulator This is the best mask: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit You can get a standard non-rebreather mask at amazon or other places for just a few bucks. Be sure it comes with the tubing. I don't know what a tank might cost in Canada. The standard advice in the US seems to be that a full setup with a big tank, a good mask, and a regulator might cost $250-$300. You pay something to have the tank refilled. Depends, of course, on the size of the tank. Because you have to bring it in to have it refilled, many people prefer to get two somewhat-portable size ones that still have a good supply of oxygen, say 80 cubic feet of O2. (An 80 cu ft tank is still pretty heavy.) You might also want a smaller one, maybe 40 cu ft, to keep in your car. Have much you get from the tank is also going to depend on the size of the tanks, as well as the flow rate and the time it takes you to abort. An 80 cu ft tank has roughly 2.5 hours of oxygen in it at 15 lpm.

It is so gratifying when people here really do their homework and take responsibility! THANK YOU. Yes, concentrators are generally less effective, and that machine is bulky (and often quite noisy). Depending maybe on how much it will cost you to keep it around, you might put it in a closet in case he runs out of O2 and you don't get resupplied on time (which is a possibility with two small tanks, which -- depending on how small they are and how quickly he can abort -- might only have enough O2 for maybe three aborts each). Ultimately, he'll probably want to have this mask: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit You probably already know this, but the issue with flow rate is to have a flow that allows him to breathe steadily and effectively without having to wait for the bag on his mask to fill up for the next breath. The reason that many people have better results from the 25 lpm flow is that it allows them to breathe fully, deeply and forcefully. In the beginning, 15 might be enough for him. Remember that if he quickly chugs some caffeine just before getting on the O2, it will probably speed up the abort time. Most often, people choose an energy shot or energy drink as the source of that caffeine. Even though a Red Bull has about the same amount of caffeine as a cup of coffee, it is believed that other ingredients in the energy drinks/shots are somehow also helpful. An energy shot, such as 5-Hour Energy, actually has considerably more caffeine in an easily-drinkable form.

You make very good points, Jon -- I figured I'd start putting a draft together later this week and have you all look at it. One important point you raise is that most popular brands of flavored tortilla chips contain MSG. But if we just put MSG on the list, how many people are going to think, "Oh, I had chips and guacamole at that party yesterday; I should check to see if they had MSG in them." I mean, once you're sensitized to MSG, you know to check for it everywhere, but until then . . . I think we might want to at least include a list of some places where it's typically found. Actually, "laughing gas" is nitrous oxide (N2O), not nitric oxide (NO). I can only say that several people here have asked for laughing gas from their dentists and have no had adverse effects. In fact, there was a discussion a few years ago about whether one could get nitrous oxide for home use, since for one person it made aborting an attack much more fun. I did see the note at the list (not going to look back at it right now) from someone who said that a dentist once told him that laughing gas produces attacks, and so I think it has to be noted on the list -- but so far, I have seen only the other side of that.

Thanks, lp. I just wanted to mention about that dentist thing that the anesthetic that dentists typically use, epinephrine, is typically a trigger for most people. There are other anesthetics, including "laughing gas," that are not triggers.

We've had threads on this topic over the years, as you might imagine. Some people have received disability for CH, but it's generally not an easy road. I'm not going to completely disagree with Denny. It's a challenge because, as that letter states, "headaches" are generally not eligible for disability. But I think the letter is saying that CH and migraine can qualify for disability under the "most analogous heading," which is (or was, since that letter is a couple of years old), "non-convulsive epilepsy." A skilled disability lawyer could tell you whether that means that you apply on the basis of your CH and the judge will consider it under the general category of non-convulsive epilepsy, or whether you somehow have to claim that you have non-convulsive epilepsy in order to get a hearing. I think it's the former -- you apply on the basis of your CH. I think that's why the letter says that the "adjudicators have received special training and policy guidance on how to evaluate migraine and cluster headaches." A lawyer, as you may know, is "free" in these cases, in that the lawyer doesn't get paid, except for direct expenses such as photocopying and mailing, unless you win. A lot of people who have won favorable rulings have done it themselves, and several have said that if you win, the lawyer takes too much for having done too little. Some have felt that even the direct expenses were more than they wanted to pay (a few hundred dollars in some cases, as I'm remembering, in part because many people with CH have pretty big medical files to copy). Frankly, I was surprised that the most common opinion seemed to be that you should handle the case yourself, since you know your history better than anyone. Another long-term contributor to this board said that he finally had success when he hired a local attorney specializing in SSDI, rather than going to one of the big national law firms that handles SSDI. In most of the cases that I know of, people were denied the first time they applied and won on a later appeal, sometimes, as I understand it, a second or even third appeal. But not always -- sometimes there was victory on the first try. The people that I know of had very long histories of chronic CH and big piles of reports showing how many things they had tried for treating their CH. Heck, I should really just dig up a few links to those threads and let you read them yourself, instead of my poor attempts at a summary. Hold on a minute (:-)). Here's one: https://clusterbusters.org/forums/topic/3820-ssdi-assistance-request/?hl=disability Another: https://clusterbusters.org/forums/topic/1514-social-security/?hl=disability #3: https://clusterbusters.org/forums/topic/582-finally-got-social-security-disability/?hl=disability

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