CHfather

no jinx . . . no jinx . . . no jinx

Nice, Michfan. I'm glad some of those things are helping you.

Of course, step one with a doctor "who doesn't believe in" O2 is to try to educate him. You could print this out and show it to him -- http://jamanetwork.com/journals/jama/fullarticle/185035-- or you could tell him to look in any damn medical book. But real quick, I would jump to step 2, and fire any so-called "doctor" that "doesn't believe in" O2 for CH. There's a list here of recommended doctors, which might help: https://clusterbusters.org/cluster-resources/ And of course you can do what many do and set up your own O2 system using welding oxygen. It's completely crazy for you not to have it. It's a game changer (though it won't prevent a cycle). Yes, you might up your verap. You don't say how much you are taking. Some people have to get up in the 900 mgs in cycle for it to be fully effective. Similarly, you don't say how much melatonin at night. Some people get into the upper 20 mgs before it takes effect for them. When you say you're on the D3 regimen, are you following it completely? Have you been on it long enough for it to take effect? Have you done any "loading" to get your D level up faster?

Edmund -- Split your trex injections: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ 2 mg works fine for most people Do you have a strong O2 system, with a high-flow regulator (at least 25 lpm) and a top-quality mask (http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit)??? Have you tried drinking an energy shot such as 5-Hour Energy at the first sign of an attack (even when it wakes you up at night)? Melatonin at night? (Starting at 9mg and working up) The D3 regimen has been very, very helpful for most people who have tried it: https://clusterbusters.org/forums/topic/1308-d3-regimen/ Some people find that in cycle they can need as much as twice as much Verapamil as you are taking.

Speechless here. It's so great, Razor.

You'll want to do all the parts of the D3 regimen, not just the D3. That's quite important. https://clusterbusters.org/forums/topic/1308-d3-regimen/ You'll notice that he talks there about a loading process with much higher D3 levels. Energy shots, even though they're much smaller, typically have more caffeine and taurine than energy drinks. Verapamil should be monitored, so the walk-in might not prescribe it. And it takes a while for the verap to kick in. Often a steroid taper is used as a bridge to give the verap time to work. Steroids do interfere with busting (it is generally believed).

There are people who have gone through the hell of abandoning sumatriptan for the five days, and eventually they were glad they did. Others have not been able to find a way to do that. Some have found that when they stopped the triptans, their attacks decreased in number and severity. (It sounds as though maybe you are taking the pills "preventively," not when an attack has started (or when you anticipate one starting). I don't know that that works. In fact, for most people the pills don't seem to work in any form, as a preventive or as an abortive. So you might not be getting much from them in any event.) The D3 will help during a cycle, but for most people that effect doesn't happen quickly (I suppose it depends on what your D level is when you start and how much loading you do to try to raise it quickly). Going back to your other, O2-related post, it is recommended that you stay on the O2 for 5-10 minutes after aborting an attack, since that can help hold off subsequent attacks. It doesn't sound like you are doing that. I can't say that your method, sucking from the hose, is a bad idea since you have said that it works effectively for you, but (a) I figure there must be a reason that a mask is recommended; and ( using a flow that's light enough that you can stop it with your finger might not really be the best strategy. You want to be able to take big, deep breaths. Since you say you're going through a lot of O2, I can't help but imagine that a proper non-rebreather mask would maybe conserve O2 as well as being more effective. You can get a non-rebreather mask from amazon for something like 6 bucks. I think at your other post I suggested energy shots. Have you tried that? You say that melatonin didn't work for you. It's possible that your dosage was low. In cycle, some people get up into the high 20mgs before they get relief. It seems you have no pharma preventive. Verapamil, once it kicks in, can be pretty effective (at high enough doses), and it doesn't seem to interfere with busting.

Thanks for taking the time to make this post, Wilson. It will help others who see it. We've been advising about welding O2 for quite a few years here. There's a considerably less expensive regulator, which comes with the barbed fitting for a hose, here, in case you should need another one: http://www.harborfreight.com/catalogsearch/result?q=oxygen+regulator There's probably a Harbor Freight store near you Two other quick things. 1. Many find that an energy shot, such as 5-Hour Energy, drunk down at the first sign of an attack will speed the abort (though yours is already quite speedy, particularly when starting from a severe attack). 2. You might want to try the D3 regimen, which has been very helpful for a very large percentage of the people who are doing it: https://clusterbusters.org/forums/topic/1308-d3-regimen/ Interesting that you are getting such excellent results without a mask! You put the hose in your mouth, I take it.

Shya, this is great news. I remember how hard you were searching for solutions. From what can be read online, Seroquel seems not to work very well for most people with CH -- but maybe the ones it works for don't come back, as you so kindly have done, to let people know. I suppose that most people reading your post will be stunned, as I was, to read that a doctor prescribed demerol and your boyfriend kept taking it for so long -- and then he started taking percoset. That stuff rarely helps with CH. He had enjoyed some success with busting as I recall, but didn't like the effects. He must have really hated those effects to take that other stuff for so long. I just have three questions. I recall that he hadn't had a top-quality oxygen system when you were here in the past. Did he ever get that set up and try it? Did he ever try seeds as a non-hallucinogenic busting method? And does injectable sumatriptan not work for him? Well, four questions, now that I think of it -- wasn't trying indomethacin a possibility at some point? Did he ever do that? I hope his success continues, and thanks for letting us know.

Thank you for that reminder, amon!! I think I'm remembering correctly that it is the calcium supplement that has to be taken 8 or more hours away from the verapamil, because verapamil is a calcium channel blocker.

10lpm is a low flow rate. It could work for you, but it's low. Is that as high as the regulator goes, or does it maybe go to 15? Again, your supplier should have at least a 15 lpm regulator for you. 15 should work, I think, but many people find that 25+ lpm is preferable. We can discuss this more after your basic setup is in place. I realize that "small" and "large" are kind of imprecise terms. Is your tank roughly 3 feet tall (or more), or is it roughly two feet tall (or less)? As Pebbles' suggested, it's very rare for injected sumatriptan not to work. Nasal sprays work for some people, but if it didn't work for you, then you want the injection (split into smaller doses, as I have mentioned, and of course with your doctor's approval (though I presume your doctor approved the spray, and I don't know how different the injection is, particularly if you use the split dose)). More than a few people find that more than 480 verapamil is needed during a cycle. Up to twice as much as that. Obviously, another thing that would have to be approved by your doc.

rental in orlando should be simple. like i say, call your provider. and this place looks like a possibility: http://www.orlandomedicalrentals.com/medical-equipment-rentals-orlando.asp yes, energy shot/drink at first sign. many prefer them very cold (but not everyone). combination of caffeine and taurine is said to be more effective than coffee, for example. but some people use a strong cup of coffee. i'm a fan of the shots because they're easier to get down fast and they actually have more caffeine than a standard 8 oz. drink like redbull. split your injections if they're 6mg: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ agree with you that rebounds are a possibility, so limit use. and of course remember that trex will block busting.

Along with the excellent advice/questions from Denny and Pebbles, I wonder whether you have oxygen cylinders/tanks, or a concentrator (machine that makes O2 from room air). You want tanks. Your supplier should have a NON-REBREATHER mask for you -- insist that they provide that. (The better mask that Denny mentions is here: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit) If you have tanks, how big are they are what is the lpm on the regulator? You need at least one big tank (an M tank) and at least one smaller one (an E tank) for portability. If they have only given you one or two small tanks, that's not enough. An energy shot such as 5-Hour Energy drunk down just before starting the O2 can help speed the abort. It sounds like you're saying that you have been doing repeated steroid tapers. That's a really bad idea, because of the long-term effects of the steroids. How much verap are you taking? Are you taking it only when a cycle begins, or continuously?

Maybe you've already checked, but I wouldn't assume that oxygen will not be available at the location of your destination wedding (congratulations). Depends on where that destination is. Some providers will arrange for tanks at US and non-US locations, or know something you can do to get tanks, so check with your provider. In some resort-type places, there are businesses rent medical oxygen cylinders (might or might not need a prescription). I think with some persistence you will be able to find something almost anywhere. Hopefully, you'll knock out your current cycle long before the happy day. You don't mention energy shots/energy drinks -- do they work for you? I guess I wonder whether, if all else is failing (which we are not expecting to happen), you might get some injectable sumatriptan to have on hand.

Thanks, folks. Very much appreciated.

Trackle, Thank you for clarifying my misunderstanding about sumatriptan and insurance. I think in a previous discussion you had thought about using the injectors instead of the spray, because they can be split. From 12 6mg injectors you could get 24-36 effective injections (2 mg works for most people; some use 3 mg). My guess would be that maybe the neurologist will suggest topiramate as a possible preventive. I know we've discussed many other things in this thread, and I won't remember them all, but I hope you'll be able to pursue a better alternative for oxygen with the neurologist (getting insurance to pay for it), or maybe it will make sense to switch to welding O2. And I hope you might find out that the D3 regimen is okay for you to follow. I think that's your best resort for an effective preventive. We've discussed busting with seeds. I remember you saying that you do have a top-quality mask for your O2 use, and I don't think we followed up on that, so I'll just mention that as far as I know this is the only mask made for people with CH: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit. I think we discussed melatonin, too, but I really don't remember where you were on that. No need for you to respond to any of this. It sounds like your are, very reasonably, tired of talking about it. But of course I, and others, would like to know any way we might be able to help.

I really don't think sumatriptan is an off label treatment for CH. It's certainly listed in every official medical guide, along with oxygen, as the standard abortive. (In fact, one of the frustrations is that the medical standard calls for 6mg sumatriptan, making it hard for people to get 3mg injectors, even though that is all they need.) I have heard of people having difficulty getting enough Imitrex covered by their insurance (which is why people will tend to stockpile it when they are out of cycle), but I don't recall hearing very often of insurance refusing to cover it at all.

https://migraine.com/topic/preventing-migraines-with-vitamin-d3/

"Breathing" as a trigger. That explains everything!

john', as you suggest in your other post, I think what your doctor was really saying was along the lines of "It wasn't in my textbooks, and I don't really want to think more about it, so let's call it coincidence." So I hope you'll keep paying attention (as I'm sure you will), because a pattern just might show up.

Moxie, what a hard, hard thing to endure. I am so sorry. Small donation has been made.

Hoping for good things!

Here's some info about how O2 is used. https://clusterbusters.org/oxygen-information/ But ask questions. Many experts here, and some new strategies not mentioned in there. It could make a very big difference in your life. There is a better mask, designed specifically for CH: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit With verapamil, you have to start at a lower dose and work up, with monitoring of its cardio effects. Sometimes a course of steroids is used to try to address the pain while the verapamil has a chance to take effect. The thing about melatonin is that people with CH have low levels of it, so this is thought of as a kind of "replacement therapy," I guess. More than just to help you sleep. Some people get into the upper-20-mg levels before getting real relief. We didn't mention energy shots (such as 5-Hour Energy). For a lot of people, quickly drinking one at the first sign of an attack will reduce the severity of, or sometimes even abort, an attack. Strong cup of coffee works for some. Triptans are only meant to be abortives, not preventives, so your experience of them only dealing with the attack at hand is consistent. Some people are convinced that triptan use causes rebound headaches and extends cycles. A crappy tradeoff to have to make. That's why getting O2 working right as your abortive is so important. I hope you are now splitting your injections.

To set up a welding-based system, you need a regulator and a non-rebreather mask. You can get the highly-recommended regulator here -- http://www.harborfreight.com/catalogsearch/result?q=oxygen+regulator(there is also probably a Harbor Freight store near you) -- and the mask here: https://www.amazon.com/MEDSOURCE-No-Model-Non-Rebreather-Oxygen/dp/B00BBFQ64M/ref=sr_1_2_a_it?ie=UTF8&qid=1483476376&sr=8-2&keywords=non-rebreather+mask You can get both of them in a couple of days with fast delivery, and if you can get a tank through that relative, you're in business. Very hard for me to think of any reason to wait. Having taken D3 is not the same as having done the full D3 regimen: https://clusterbusters.org/forums/topic/1308-d3-regimen/ Check your life for triggers: https://clusterbusters.org/forums/topic/4568-triggers/ You don't seem to be taking a pharmaceutical preventive. Verapamil is the most commonly prescribed one for CH and migraine. People with CH often find that in cycle they need pretty high doses -- higher than what they have taken before, up in the 900mg levels -- before it actually works. Melatonin at night, starting at 9mg and working up as needed, helps many with nighttime attacks. Busting, described in the numbered files over here -- https://clusterbusters.org/forums/forum/6-clusterbuster-files/-- might be your best current hope for treating CH AND migraine long-term. I agree with Pebbles about what Mayo can and can't do for you. They might have some other pharma stuff for you to try (octreotide or something), but pharmaceutically they have no secret answers, and you're not close to being a candidate for more drastic treatments.

Brad, five days between busts is strongly recommended. If you bust on a Thursday, for example, then the next would be Tuesday, and then Sunday.