CHfather

I'd bet that you're right and the pediatric mask has a bag that's too small. I don't know that for a fact, and I'm not sure I completely understand the situation you are describing (I think maybe there's a typo in there that's throwing me off). Pulling away to take deep breaths is of course harming the process, since you're getting room air into your lungs that now has to be expelled. Some people remove the bag and instead attach something bigger -- an unscented turkey roasting bag, for example, or an unscented garbage bag. There's a description of a different method here that includes creating a different bag -- https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/ -- but unfortunately the images are not appearing, at least for me. I'm going to contact Batch and ask him what we might do about that. If your physical condition can handle it, many people start on the O2 with some strong caffeine -- a strong cup of coffee or, usually better, some kind of "energy shot" (such as 5-Hour Energy) or "energy drink" (such as RedBull). That almost always speeds abort times. If there are open holes in your mask (a circle of small holes not backed by a gasket), be sure they are blocked when you inhale, so you're not taking in room air.

Great. I assume you might discuss with your wife what might be the best approach. Needless to say, a lot of doctors don't like patients doing their jobs for them, even when that's warranted.

Yes, at least try to get oxygen from your GP. They have some kind of book or online reference that they are supposed to refer to when treating things they're not familiar with. One of them is called "Up to Date." You can see here that it recommends O2 first: https://www.uptodate.com/contents/cluster-headache-treatment-and-prognosis?source=search_result&search=cluster+headache&selectedTitle=2~41 Any such reference will have oxygen listed as the #1 evidence-supported abortive (along with injectable Imitrex). Do you know someone at the doc's office, a nurse or assistant or something, who you could contact before your appointment to look it up? This is a link to the core study of the effectiveness of oxygen: http://jamanetwork.com/journals/jama/fullarticle/185035 Maybe you could send it over in advance, or at least bring it with you. To be honest, some of us theorize that doctors don't prescribe oxygen in part because they don't know how to prescribe it. The prescription should read something like "Oxygen therapy for cluster headache. 15 minutes at 15-25 lpm with non-rebreather mask." Ideally, the doc would fax it to a medical oxygen supplier, but even if s/he gives it to you, you can call suppliers on your own. (The "15-25 lpm" in there is an attempt at an end run. Most doctors who do prescribe O2 will only prescribe up to 15 lpm, but 25 is better, so it's worth a try if you have any voice in what gets written.)

Here are a few articles about venous conditions creating CH symptoms. Of course, these might or might not have been what is shown on your MRI. In one, it says these conditions are highly responsive to oxygen. https://link.springer.com/article/10.1007/s10194-010-0186-3 http://jnnp.bmj.com/content/76/8/1084 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2854946/

In my opinion, the longest ways treatment has come recently (not counting clinical trials still in progress) are high-flow oxygen with the specialized mask; the D3 regimen; and busting (and, to some extent, melatonin and "energy drinks"). Probably none of those are things your doctor was thinking of. Doesn't mean that there aren't plenty of pharma and other "medical" options that you probably haven't tried, and it's great that he knows what they are, but I'd put my energy into those other things first.

Doug', in case no one has a better answer for you, you might look at the first post at this General Board, "Recommended Doctor List." It's kind of old now, but it might be helpful. Also, you might post your question at the Facebook group, "Cluster Headaches," which has a pretty broad membership group. Good for you for recognizing a bad doctor and moving on.

Beautiful, beautiful, beautiful, beautiful, beautiful . . . . Thanks, Bob!

To avoid frustration, it might be wise for you to contact your O2 supplier 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. When the stuff is delivered, have the delivery person set it up for you and be sure it's working. You probably will want to buy the mask made specifically for people with CH, which many people love. It's here: http://www.clusterheadaches.com/ccp8/ And if you only get regulators that go up to 15 lpm (which is typically what doctors specify), you might want to buy some higher-lpm regulators. I think you might do just fine with 15 lpm for now. If you have essentially had no attack-free periods since last fall, you are on the verge of meeting the official definition of chronic. I don't know what to tell you about that. The main thing is that there's a whole bunch of stuff that is going to make managing your CH, chronic or episodic, a whole lot better, starting with the O2. More than a few folks who are chronic have become practically painfree with the D3 regimen, and the same can be said for busting. Maybe raising your verapamil dosage will help. You really don't have to fear a lifetime of the kind of pain you have been experiencing lately; nothing close to it. And, there are very promising clinical trials underway of pharma things to treat CH.

Thanks, Don! You got this without a prescription, I take it. In the past, prescriptions have been required whenever I tried to get one, except for used ones at eBay. Great news if that's not the case here.

++ to what Denny said. GET OXYGEN, start the D3 regimen, look into busting (in the numbered files in the ClusterBuster Files). Busting has saved many a life, oxygen has made CH a lot more tolerable (abort an attack in 15 minutes or often considerably less), and D3 has been a game-changer. FWIW, there are substances other than triptans that can be successfully used as abortives. Or at least one, that I know of -- octreotide. For many people, Verapamil doesn't become effective until they reach considerably higher levels than you are taking. 960mg is not uncommon. Try drinking an energy shot, such as 5-Hour Energy, at the first sign of an attack (most people prefer them very cold). One of the true experts here says you need to drink at least two liters of water every day, and that when you have an attack, drinking ice water through a straw so it hits the CH side of your palate will help a lot. Energy shot + oxygen yields pretty quick aborts, and D3 lessens and slows down attacks so O2 works faster.

++ to what spiny said.

My daughter, a smoker, was terrified at first of having O2. Now, she smokes practically right next to her tank, as she's been doing for five years. Not while using it, of course, but the rest of the time. Not recommending that practice; just agreeing with spiny that if you don't do anything completely crazy your risk is minimal.

The psilocybin study currently underway at Yale Medical School, long lobbied for by ClusterBusters, is going to give us some kind of hard evidence.

I've never seen an explanation for why. Many "headache" treatments, maybe all of them, cause rebound attacks from overuse, and I think "overuse" might be the key word here -- I've never seen anything say that occasional use of triptans will cause rebounds; typically, what's said at medical sites is that using triptans more than two or three times a week (or some number of times; I think it varies) is likely to cause rebounds. This is not exactly answering your question, which was about extending cycles and making attacks worse. We certainly have reports here from people who believe those things happen, and I'm not disputing them although I think we also have to take into account the highly variable nature of CH and how hard it is to attribute things to a specific cause. My daughter never used triptans; her cycles consistently became longer and her attacks worse.

A very large percentage of incidents involving oxygen (more than 90%) are related to smoking. So don't smoke when you use it. Oxygen isn't flammable; it's an accelerant. So, for example, if you have used O2 and a lot has leaked out (very highly unlikely if you're using it properly, since it all goes into your lungs), if it's on your clothes or your furniture and you get a possible fire source on that clothing/furniture, it will burn faster. If you do smoke and you want to be abundantly careful, change your clothes after using O2 or wear some kind of smock that you take off after using it, and don't smoke in the room where you use O2. Be sure the tank's turned off after you use the O2. Shut down the regulator, too, if you want to be double sure. Leaked oxygen will not cause the room to explode if there's a spark -- it's just an accelerant. If the tank becomes very hot, it can explode from the expanding gas inside, so keep it away from strong heat sources and out of direct sunlight. You could let your local fire department know that you have an O2 tank, since it surely will explode if there's a real fire, and there are signs you can put up. Store tanks where there is air flow. I've read that you shouldn't use Vaseline or other petroleum-based creams and lotions on your face or upper part of your body, since they're flammable. Make sure the tank doesn't fall over. If you got your regulator at Airgas, does it have the barbed adapter for connecting your mask tubing? If not, you might be able to jam the tubing on there -- or take the regulator to a hardware store, where you can find a barbed adapter. This video walks you through how to assemble (and use) the O2ptimask, which is what the ClusterO2 Kit used to be called. https://www.youtube.com/watch?v=eX76JrEvNxE

kris', how long do your more severe attacks last? How long do the "intermittent" ones last? You are right that while some of your symptoms sound like classic CH ("clockwork" regularity; effect on your eyes; excruciating pain) some do not (the very severe effect of bright light, even to the extent of causing an attack; the constant eye pain; even the intermittent attacks). What do you do when you have an attack? The likely reason for your ER experience with O2 (of the attack starting again not long afterward) is just that you weren't on the O2 long enough. People typically learn to stay on for 5-10 additional minutes after an attack has been aborted. So, what can you do to get O2 and store it safely? You say you had a prescription but no one would fill it. (My first thought about that is "Florida," since we hear that complaint frequently from people in Florida, but it's not so common elsewhere.) Can your father help with that? There's really no good reason, and probably no legal reason, for an oxygen supply company to refuse to give you O2. If you can't get medical O2, you do have the option (as you have noted) of using welding oxygen, as many people do. It's not clear to me whether you tried the steroids. They will often stop CH pain for a while, although the CH is very likely to come back as you taper down off the steroids. You don't seem to have an abortive. Typically, the go-to abortive aside from oxygen is injectable sumatriptan, which will stop an attack almost immediately. But I fear you will not like the side effects. Oxygen is crucial. The D3 regimen does include very large dosages. (It's here: https://clusterbusters.org/forums/topic/1308-d3-regimen/.) If it's something you would be willing to try (because it is very, very effective for CH), I would strongly urge you to send a Private/Personal Message to Batch, who developed the regimen, and discuss with him the symptoms you had before when you took high levels of D. He will be completely happy to receive a message from you, and he will respond promptly. To "PM" him, click on the envelope icon at the top right of the page, and put Batch in to To line. Somewhere, you had a doctor who was good enough to diagnose your condition and write you a prescription for oxygen. That puts you way ahead of the game -- the average time before getting diagnosed is something like five years, and I'd say that at least half of doctors don't prescribe O2, even with a CH diagnosis. You might or might not have CH, or you might have CH plus something else, but it does seem that you have a doctor who is better than what most people experience. That's very valuable.

Your private insurance ought to cover oxygen for CH. Some people have to struggle with the insurance company to get it. They shouldn't have to do that fighting, but sometimes they do. I don't know what you'd pay. What's it worth to stop a two-hour attack in 15 minutes, with no side effects? Many people find that using an energy shot at night doesn't keep them awake. But it does, with some people. Maybe try it with an evening attack? Maybe start with just a cup of coffee, which is less caffeine than an energy shot (and about the same amount of caffeine as an energy drink such as Red Bull). Take it at the first sign -- once an attack is really underway, it doesn't help as much, but it can help even with the ones that wake you up. Some of us are hopeful that a truly effective treatment for CH, now in clinical trials, might be seen in a few years. But you've already seen your attacks become worse, and it's not like CH cycles to get better over time. Oxygen, properly set up and properly used, will stop almost all attacks within 15 minutes. So it's important, just as it's important for you to fully understand the condition. Maybe there were some triggers for your 7 pm attacks, for example. Foods with MSG in them are triggers for a lot of people, for example. Maybe you sometimes eat something different while watching TV (flavored chips, for example, are high in MSG, as are most packaged ramen noodle products and of course Chinese food; and chocolate and some cheeses are also triggers for many people). Just saying to stay vigilant. The D3 regimen is almost universally helpful. Vitamin D deficiency has been closely tied to depression and other brain-based conditions, too (going back to your original question). (I hate these sensationalist articles, but it's the first one I came across, and it does refer to some of the research, so just FYI: http://www.healthline.com/health/depression-and-vitamin-d.)

What you want from a doctor are (a) assurance that you don't have any condition that would show up on an MRI (CH doesn't), and (b) prescriptions. The most important prescription you can get is for OXYGEN -- the most effective abortive there is. Most GPs know too little, and are often too lazy to learn more, so they almost never prescribe oxygen. It is more likely, but still not very likely, that a neurologist will prescribe O2. Your best bet overall is a headache center. Whatever type of doctor you see, you should go fully prepared to show them why you want oxygen and why you are insisting on it. We can help you with that, so let us know. Verapamil should be monitored when it is first taken. For some people, the required dosage of verap during a cycle can be 960mg/day. The NON timed-release kind seems to work better. Two things you can do now. (1) Read in the ClusterBuster Files section of this board, particularly about the vitamin D3 regimen, which you should probably start right away (I don't know about possible interactions with meds you might be taking for your other conditions, or with those conditions themselves), and about possible triggers. Busting (the subject of the files with numbers) might not be right for you. (2) Maybe try an energy shot (such as 5-Hour Energy), or even just a strong caffeine drink, at the first sign of an attack (if caffeine is okay for you). This can sometimes stop an attack, or lessen its severity. Others might suggest other things.

Yes. It also seems to be true that the more sumatriptan you use, the worse/more attacks you get, and the longer your cycle will last. One strategy is to split your doses. See this: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ A better strategy is to abort your attacks with oxygen, not triptans. Are you using O2? Also, the "vitamin D3" regimen can substantially reduce the number and severity of attacks you have: https://clusterbusters.org/forums/topic/1308-d3-regimen/ There are other things you can do, too, but let's start with those.

Of my 4,000ish posts here over the past seven years, I'd say that at least 3,000 of them have been related to oxygen. So sad and infuriating that we have to do here what the medical profession ought to be doing as baseline treatment for CH patients.

Your posts so often bring tears (of gladness) to my eyes, Mit'.

Good thinking! That'll give you a reasonable test. You know what regulator and mask to get? Don't buy the regulator at Airgas -- about 3x as much $ and might not have the barbed fitting you need for the mask tubing.

Thank you for posting this, Siegfried. There has been a long debate about whether such as thing as "cluster migraines" exists, combining the symptoms of both. I'm sorry that you seem to be one of the rare cases where there is such a thing. And I am very, very glad that oxygen works so well for you!

Since you've read everything first (thank you!), and I have nothing negative to contribute, I'll just mention that it might be less expensive than $250 to get an O2 prescription at a walk-in clinic. If you have any official piece of paper saying you have a CH diagnosis, you could call around to walk-in clinics (if there are more than one near you) and ask whether they will prescribe O2 for your CH. (This isn't a crazy scheme I'm making up; I know of two people who have done it.) As you have probably read, the good thing about getting medical O2 is that they deliver, so you don't have to do the schlepping of tanks during a cycle.

Also, if it's like past years, Racer will be giving a great presentation and lots of valuable informal advice on using O2 most effectively.