CHfather

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.

A shadow is a kind of ominous feeling in the area where you usually have pain. Sounds like you had some of that, but not so much, and it sounds like you haven't had those severe pain attacks that led you to think you might have CH. I'm sorry your doctor wasn't more helpful; I hope you got some relief from the rolfing/craniosacral treatment you had today. I'm sorry to be such a nag about this, but I think it's very important that if you have that pain again you get yourself back to the ER, which might at least speed up the time before you see a neurologist. I think that assuming that you have CH and trying to self-treat it is not the best thing you could be doing. I'm not saying you're doing that, or doing that exclusively (it's clear that you are considering other possible explanations); I'm just saying (again, and, I promise, for the last time) that it really doesn't sound to me like it's CH that you have.

What is the status of your attacks? Still having them? Having any "shadows" that seem to suggest that an attack is lurking?

You should forgive me for continuing to say this, but IF you have CH, that would be a reasonable target. (It's probably a reasonable target for anyone -- my point is that since I don't think we/you know what's up with the attacks you have experienced, I have no way of knowing whether your D level is relevant or not.) What's been happening with you lately, in terms of attacks, doctor visits, whatever?

Same test. Results get reported in different formats. The calculator here says it's 51.7 http://www.endmemo.com/medical/unitconvert/Vitamin__D.php Same here: http://www.vitamindservice.com/node/91 84 is the average level that Batch has found in his research for people who have become PF, so you could consider it a target, but you might need more (or less).

I feel like reports regarding CBD oil are all over the map -- different types, different uses (aborting vs. preventing), different levels of success. If you just type CBD into the Search bar near the top right of the page, and be sure it's set for "All Content," you'll see more than 100 posts, which you can browse through. Enough reported successes, I would say, that it's worth trying.

Mit', this is a question you might want to also post at the Facebook Cluster Headache group. More chance of reaching someone with the experience your interested in.

Attacks after using O2 do indicate that you didn't stay on it long enough after aborting an attack. 5-10 minutes after the abort is recommended. Alternatively to breaking open the 6mg injectors and getting two or three shots from them, some doctors will prescribe you vials of sumatriptan and syringes so you can measure out your own dose, and there are autoinjectors with lower mgs. There's a 4mg, I'm pretty sure, and also a 3mg, I think.

I suspect that this is a question you should ask Batch directly. First time I recall hearing of the spray, and I do read pretty much every post. Batch is great at answering PMs. Go to the envelope icon at the top right of the page, open it, and put Batch into the "To" line. Maybe there will be more discussion of this here, but if not, I'd sure appreciate it if you let us know what Batch says.

Just a note regarding masks. Both the non-rebreather and rebreather (partial rebreather) have a bag attached. The difference is that the non-rebreather blocks exhaled air from going into the bag (so you aren't rebreathing any of the air you exhaled, and are getting only pure O2), while the partial rebreather allows exhaled air into the bag. You want the non-rebreather.

Very unfortunately, many people do find that strenuous exercise triggers CH attacks. I don't recall seeing a way around that problem, but maybe someone will have a more positive note for you. Commenting on your treatments . . . Are you splitting your trex injections? Triptans seem to extend cycles, worsen attacks, and cause rebound attacks. Using less with each injection can help: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ It seems that you don't have OXYGEN. You really, really want that as an abortive that will reduce your need for the triptans. Depakote is sometimes prescribed as a preventive. The side effects can be troublesome. More commonly prescribed is verapamil.

Aside from one or two instances of extreme pain (which might or might not have been at CH-level severity), you have virtually no symptoms that would lead to a CH diagnosis. No runny, red, or puffy eye or drooping eyelid, no nasal congestion. Vertigo/dizziness are not symptoms related to a CH diagnosis, although a very small number of people with CH have them. (They are different things: vertigo is feeling like you or the room are spinning; dizziness is feeling woozy, lightheaded, etc.) Your attacks are not always at the same time of day. Advil doesn't alleviate CH pain; it has no effect on it at all. As we have discussed, virtually everyone with CH is too agitated during an attack to lay still or sit on the floor. It is highly unlikely that melatonin + vitamin D would account for the experience you just had. (Migraines, and other types of headaches, do sometimes wake people up at night. Some people with CH are not awakened during the night by attacks.) You seem to have something going on, but I can't see a sensible doctor diagnosing it as CH. I say all this because I worry that treating it as though it's CH as you are doing, with seeds, D, melatonin, energy drinks, etc., might somehow be making it worse if it's not CH. I know you're trying to get to see a doctor, but that really is your most crucial step right now.

yep. thanks, spiny.

This is a whole different kind of "right." Like I say, if it was anyone but Batch, I'd be dubious. The "regular" way that most people use seems to be pretty darn good, but Batch says his works faster and uses far less O2.

The standard non-rebreather mask has those holes. You just need to cover any open holes when you're inhaling. The "ClusterO2 Kit" mask is actually a different type of mask. You might want to look at the method recommended by Batch. As you may know, he's a true O2 expert. His method uses much less O2 than the usual method. https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/