CHfather

This is interesting and valuable. Thank you. But I have three words for you. Oxygen, oxygen, oxygen. It's faster than your pills are working, better for you, less guesswork involved, and no need for the other strategies you describe. And a few more thoughts: D3 regimen. Energy shots. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ It's rare for "dark and quiet room" to be an option for someone experiencing a CH attack, so you are fortunate in that way.

Lady', may I suggest that this document might give you a sense of options: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

I should have mentioned this in my previous post. Because most O2 suppliers are dealing with COPD-type ailments, they are used to supplying very small tanks (D size or E size) for portable use. You need a way bigger tank for home -- an M tank or an H tank. You also want at least one E tank for portability (car/work). I'd be surprised if they don't also give you some kind of runaround about this. Tell them that they'll be bringing replacement tanks to your house every other day if you don't get at least one of the big tanks. More than one is strongly preferred.

Great reply from Pebbles'. The reason a concentrator is ineffective is that it makes O2 from room air, and it is not 100% pure O2 (there is still some room air mixed in). Plus, the regulators on most concentrators don't go up to 15 lpm (liters per minute), which is where you want to be. I'm telling you all this because it's likely that the O2 supplier has no experience providing O2 to someone with CH, and you might have to educate them a little. I imagine 95% of their business is providing low-flow O2 from concentrators to people with COPD-type ailments. For those people they typically also supply not a mask but nasal cannula. You need a mask. For relief from CH, you want the purest O2 possible. That also means that when you get your mask, you might find that there is a circle of small open holes in it. Usually, one set of holes has a gasket behind it but one is completely open. Because you do not want to inhale any room air, you should cover the open holes when you inhale. You can use tape, or your thumb. You also want to hold the mask firmly to your face so that you get a tight seal. Eventually, or right away, you should get the mask that's made for people with CH: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit

A substantial percentage of people with CH use welding oxygen as the basis for setting up their own O2 systems. I'd guess it's at least 15-20%. It's slightly more hassle, because you have to go buy the tanks and bring them in to have them replaced when they run out of O2, but it's probably cheaper even than insurance in the long run, and you don't waste time suffering while you hope to find someone who will write you a prescription. Give this some serious thought. You will be amazed at what a difference it makes. https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/

Maybe if you looked at the post I linked you to you already know this, but many people with CH use welding oxygen, which you can get without a prescription, to treat their attacks. You really, really want O2, and you could have it in a few days by going the welding route. More detail here: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/

Ilya, did you try the email address that I sent you by PM?

This might give you a sense of the possible options: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

You can't get O2 from amazon. That's seems true. So sorry. Although at least you didn't get triptan pills. The spray will probably help you. (Others will answer your questions about that.) So tell him you got some oxygen from Amazon and it worked great and now you'd like that prescription. Here is more or less what the prescription should say, since it's a good bet he has no idea how to write it: "Oxygen therapy for cluster headache: 15 liters per minute for 15 minutes with non-rebreather mask." Have you looked at the suggestions here for getting by without O2. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

I realize that I might have misread/misanswered your initial question from a few posts ago. The answer from me that you quoted above was related to CH, not HC. I'm sorry if I unintentionally gave you wrong information because I misunderstood the question. Regarding the two questions above . . . . Question 1. No. That would be a question for Batch, who has been studying the D3 regimen across a range of patients, and may have seen some HC cases. People who come here and turn out to have HC don't generally stay. If you put "hemicrania" in the search bar at the top of the page, you'll see what's been said about it. Regarding alternatives, what we have observed -- which might or might not make it reliable -- is that people with HC might get temporary relief from busting, but it doesn't last. Beyond that, if you read around on the web you'll see a lot of alternatives mentioned, in part because Indo is indeed hard for some/many to tolerate. There's this, for example: "If people cannot take indomethacin, there are case reports of gabapentin, melatonin, topiramate, verapamil, onabotulinumtoxinA and occipital nerve stimulation for treatment of hemicrania continua." https://americanmigrainefoundation.org/resource-library/understanding-migrainehemicrania-continua/ Question 2. Again, really a question for Batch. I'm not familiar with the data you're referring to. It's my strong impression that people who take the 1okIU/day gradually raise their D level significantly. There is ultimately some concern about taking too much D3 (particularly if it is taken without all the cofactors), and maybe that is a reason for taking "only" 10kIU/day after the loading period, but I really don't know.

I would be sure that I had arranged for oxygen on the other end. I would consider how effective certain strategies are for aborting in my particular case. Energy shots, triptans, a SPUT . … . (You can look up SPUT -- or anything else -- by using the search bar at the top right of the page.)

https://clusterbusters.org/forums/topic/4568-triggers/

We have had enough anecdotal information here for many years now to be confident that it helps most, and is a game-changer for many. You can trust me that when it was first suggested here that a D3 regimen was helping people, there was a vast amount of skepticism. Batch has carefully tracked it for many years, and his data drawn from hundreds of users (which I think are presented at the external link I provided) are very persuasive.

Seth, click on the blue banner for "new users" at the top of the page for basic information about busting. Then ask questions (at one of the "restricted" sections here -- "share your busting stories" or "theory and implementation"). Suggest you read this file for an overview of things you can do/should be doing: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ Sometimes they go away, or you might have a long remission, but -- sorry to say -- your doctor was mostly wrong.

Well, constant lower-level pain with occasional increases in pain is often associated with a CH "lookalike" condition called hemicrania continua. You might look into that. https://www.ninds.nih.gov/disorders/all-disorders/hemicrania-continua-information-page You might also be having CH with "shadows." There is some information in this file about treating shadows (ginger, mostly): https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ As for the D3 regimen, how long it takes to have a strong effect varies greatly (surprise, surprise). 10 days is rarely enough. It depends on where your D level was when you started, how much you load, and what D level you personally need to hold off CH. A minor terminology issue. What you said about "busting the cycle" was completely fine and completely understandable, but the term "busters" in the name of this website refers to the process of treating CH with psychedelics, so we usually reserve the word "busting" for referring to that specific process, which you can read more about at the file I linked you to above and also (same content) in the blue banner for "new users" at the top of the page.

Yes, from here. And he responded by PM to me here. I wasn't asking him about Ilya K's specific case, but about a good link to the D3 regimen, since the old one wasn't working. I have changed the links in the pinned posts. (Can't type "Ilya K" without thinking about David McCallum in "The Man from UNCLE." Ilya Kuryakin. A very old-time TV reference.)

From my casual reading about Indomethacin and HC, it seems like there's not a reliable dosing protocol. I think that's in part because it's advisable to start out relatively low because of the gastrointestinal side effects, but higher doses might be needed to treat it. I know we've all read/heard that one should know in a few days or less whether Indo is working, but I have read elsewhere that it can take a couple of weeks. By that time, if something seems to be working, it might not be apparent whether it's the Indo or some CH-related treatment (D3, verap, busting...). Normally, of course, we don't care as long as something is helping, but Indo is hard to sustain for many people, so you wouldn't want to be taking it if it's not the thing that is helping.

Actually, my PM got to him!

Sounds like hemicrania continua to me. https://www.ninds.nih.gov/disorders/all-disorders/hemicrania-continua-information-page

Hmmm. I also just sent him a message, but didn't receive that error message. I'll PM you his email address. I hope you will reach him -- and I hope he's okay.

Send him a PM. Click on the envelope icon at the top right of any page, and type Batch into the To line. If he doesn't respond here, he will surely get back to you. The pinned post is outdated, and now even the link to more recent information is out of date. This will get you to Batch's discussion of the protocol (scroll down the page), but I'm not sure how much it will help you with your specific question. https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10%2C000+IU+of+Vitamin+D+in+80+percent+of+people

There's a lot of crazy, lazy doctoring in here, and plenty of excellent comments and advice from your CB friends. As others have said (and I said at a different post of yours from today), sumatriptan pills are useless. Indomethacin, just to repeat, is used to treat the CH "lookalike," hemicrania (continua/paroxysmal). For all practical purposes, your doctor doesn't know which you have, CH or a hemicrania, so it's not theoretically unwise to prescribe indomethacin, which is a strong nonsteroidal anti-inflammatory. Beyond the advice that kat' got, it should be taken with something that protects the stomach lining, typically a proton pump inhibitor such as Prevacid or Prilosec. I haven't heard of headache as a common side effect of Indo, but it's a potent medicine so it's entirely possible that it afflicted kat' in that way. Have only read of a few people who didn't find it hard to tolerate for the gut issues. 100mg/day of Indo is a pretty big initial dose, particularly in 50mg increments. https://americanheadachesociety.org/wp-content/uploads/2018/05/Hemicrania_Continue_June_2015.pdf I can't say what I would do if I were in your situation, but I'm pretty sure I'd hold off on the Indo since you have that neuro appointment tomorrow.. If you get O2 fairly quickly, maybe you want to see how that helps, but I'd imagine Monday might be the soonest you'll get it if the neuro prescribes it. Pray that the neuro knows what s/he is doing and gives a s**t, and ask for at least a triptan nasal spray in addition to the O2. If you get injections, you can split them from the 6mg injector to 2 or 3 mg doses (just ask and we'll tell you how). That's a lot less toxic and a lot less likely to cause significant rebounds. Maybe you can get a prednisone taper (I don't fully remember your current status) to possibly hold off the pain for at least a few days until you get the O2. Have you read the suggestions in here for dealing with CH without the proper pharma prescriptions? https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ Caffeine/energy shots usually help. Ice water to the palate sometimes helps. In one study, inhaling cold air from an air conditioning vent (home or car) was as effective as using a rudimentary O2 system.

I'm gathering (as Trent suggested) that you might have triptan pills. Those really don't help, unless maybe your attacks are predictable enough that you can take the pills an hour or so before your attack. Nasal spray might work, injections are pretty invariably effective. Side effects vary. As Trent is also indicating, oxygen is what you want.

It's not uncommon that a PA is more helpful than the doc. This is the original O2 study, fully consistent with medical research standards: https://jamanetwork.com/journals/jama/fullarticle/185035 It wouldn't hurt to print it out and bring it with you. There is also some more recent research, less rigorous, showing that higher flows are better. All doctors and PAs have some kind of app that gives them core information about a condition. They will all show that oxygen is the #1 abortive (usually triptans are also #1). A commonly used app is UpToDate. You can ask the PA to look up CH. An O2 prescription should read something like this (write it down and bring it with you, because a lot of med professionals don't know how to write it): "Oxygen therapy for Cluster Headache: 12-15lpm up to 15 minutes with non-rebreather mask." There are abbreviations in there when it's formally written, but that's the content. You might also look here for a little more info about the other pharma things you might want. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ The linked-to article under the heading Pharma is clear and helpful (and also states that O2 is the #1 abortive -- I guess maybe you'd want to print that and bring it with you, too). So, sometime people have a CH "lookalike" that is most commonly some form of hemicrania. You can look that up -- hemicrania continua, paroxysmal hemicrania, any of them. As BOF says, oxygen is generally not effective against hemicranias. There is, however, a pharma drug, Indomethacin, that is effective. Some medical writers have said that if there's any doubt about whether a patient has CH or a hemicrania, they should do a course of Indo at the beginning of treatment. (Indo is very hard on the gut, for most people.)

Exi', you might find some of this helpful: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/