CHfather

you are a treasure, dln. thank you.

There seem to be people who disagree with me about this, but my answer is yes/no. Yes to the important parts -- a demand valve attached to a DISS fitting will bypass the lpm settings on your regulator, and most importantly, yes, you will get as much O2 as you need every time you need it just by inhaling. This second part is not relevant to the "yesses" I just stated, but it's of interest to me, and I will be happy to be corrected if I am wrong. I think lpm stops being meaningful when you are using a demand valve. Think of the typical mask with a reservoir bag. The lpm determines how fast the bag gets filled, but when you breathe in, you are not breathing the O2 in at the rate it came into the bag (the lpm that your regulator is set to), you're breathing it in at whatever rate your inhalation creates. With a demand valve, the O2 is always available, so there's no bag to fill, and therefore no relevance to flow rate in that regard. Similarly, as with a bag-based mask, when you breathe in, you are breathing in at whatever "flow rate" your inhalation creates. Doesn't matter what it is; the oxygen will always be there for you.

Sumatriptan oral is very unlikely to help you. Nasal spray, a little better. Injections, most effective. BE SURE to check back with us if you go the injectable route. There are a lot of misgiving about triptans -- anecdotal and research evidence that they might cause rebound attacks and extend cycles. Have you tried quickly drinking down an energy shot, such as 5 Hour Energy, at the first sign of an attack? Often lessens the severity of the attack, and sometimes even aborts them. Some people say the colder they are, the better. Don't forget to check for monosodium glutamate in your foods as a trigger.

Lovely. Thanks for all the years of work that have made this possible, Bob.

A couple of years ago I posted about a person who thought that melatonin had made her nighttime attacks worse. I think one other person said they had had a similar experience. On the other hand, the young woman I originally posted about now takes melatonin pretty regularly when in cycle. She's not sure it helps, and she doesn't like being groggy in the morning, but she no longer thinks that it makes things worse. Pain in the butt to figure out, this CH. I gather that you are looking for the simplest and most benign way to treat your CH. I'd strongly urge you to go straight to oxygen, which will abort most attacks very quickly when properly set up and used, and has no side effects. You might well want to also see if increasing your verapamil dosage (and switching to non-ER, as amon10 says) is feasible. That usually has to be done slowly, so it might not be practicable, but dosage as high as 960mg/day can be needed during a cycle. Oxygen, D3, and verapamil are in my opinion the combination you want to try.

Ah, good catch amon. On the computer, second line down on top left, there's a tab for "online users."

Me, too. The Sewell poster on LSA. As you say, Geoff', may that wonderful man rest in peace. He answered every email question I sent him with kindness and compassion. Geoff' -- Did you do maintenance dosing to prevent cycles?

The only options I get from "Insert other media" are "insert existing attachment" and "insert image from URL." It doesn't seem to permit me to upload a file that exists on my computer.

During a cycle, people often need more verapamil than most doctors typically prescribe, even though the higher level -- as much as 960mg/day -- is medically acceptable.

J, three issues. First and most frustrating, I just composed a reply to TinaLi in which I allowed the system to embed the link I had created to the D3 regimen file in the "CB Files" section. When I clicked to post my reply, I got a big error message saying something about a "potentially dangerous condition" in my post, and my whole post had been erased! [follow-up edit: when i went to create a new reply to TinaLi and clicked on reply, it restored my previous content, and it posted okay as long as I didn't add a link to the D3 file] Second, I tried to attach a PDF to that same post, but found that I can only attach "existing attachments." I was presented with five versions of the "20 Questions" document that I guess I must have attached at a previous time. I didn't see any way to get into my files to select a new attachment. Third, I can't figure out a way to get to the main CB board. I had wanted to refer Tina to a document that is (or used to be) in the "Treatment" section of the main board, but I can't figure out how to get there from here. Clicking on "ClusterBusters" or "Home" just brought me back to the top of this board.

He has the streoids, which are usually a temporary fix, and two abortives -- the O2 and the trex. He needs to add a preventive, or two, to the mix. Verapamil is the commonly prescribed pharma preventive, and most people get very good results (though not usually immediate results) from the D3 regimen: https://clusterbusters.org/forums/topic/1308-d3-regimen/ Busting is of course another very effective way to stop a cycle and possibly prevent future ones.

Beautifully done! And look . . . images . . . and attachments, too. BRAVO! THANK YOU! .

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?