CHfather

The oxygen file is here: https://clusterbusters.org/oxygen-information/ Oxygen is by far the most important thing for you to have for aborting your attacks. A doctor can and should prescribe this. The first two documents here will give you a sense of what's available for pharmaceutical treatments: https://clusterbusters.org/medical-research-reports-studies-case-reports-links/ Typically, the most effective pharma treatments are verapamil for prevention, a steroid taper to end a cycle, and injected Imitrex as a backup abortive to the oxygen. Seriously consider starting this right away: https://clusterbusters.org/forums/topic/1308-d3-regimen/ Try an energy shot (5-Hour Energy, for example) at the first sign of an attack. Most people here find "busting" to be highly effective. Read about that in the numbered files in the ClusterBuster Files section. Much, much more . . . Please follow Sierra's advice -- tell us more and stick around!

This video demonstrates a good breathing strategy for the mask, starting at about 8:00. After showing it with the mask, he also demonstrates with just the mouthpiece. I would only observe, particularly regarding the mouthpiece, that it's okay to remove the mouthpiece when you breathe out, as long as you don't breathe in any room air. Same is true for the mask, in my opinion. Here's another one, using just the mouthpiece. The breathing instruction begins at about 5:30. A well-known CH doctor recommends looking toward your feet as you use the O2. Some people find that that seems to help. Like spiny says, stay on the O2 for another 5 minutes or so after you've aborted the attack.

There's no lpm flow rate gauge on the Harbor Freight regulator (or on any welding regulator). You just fiddle with it until you get the flow you want. That takes a very small bit of getting used to, but it quickly becomes second nature. You probably realize this already, but you're looking for the flow rate that allows you to use an effective breathing strategy without having to wait for the bag on the mask to fill.

Chris', just to follow up on what Denny said, you want to go to the Airgas welding retail store, or whatever they're calling it, not to an Airgas medical oxygen store. There's no reason why they wouldn't want to sell you a tank for welding. Also, don't ask for medical sizes (E, M, H, etc.) -- welding tanks don't have those designations, only medical tanks. Typically at Airgas they go by cubic feet. You might want to get two 60 cu ft tanks. That adds up to roughly the size of an M tank. You can go bigger or smaller, remembering that you have to bring them in when they need "refilling" (they don't refill them, they exchange them for full ones) and they can get pretty heavy and unwieldy at larger sizes. As Denny says, get the Harbor Freight regulator. Do not buy a regulator at the welding supply store.

Hmmm. I guess you might look into hemicrania continua, which is not treated by the drugs that didn't work for you but by a very strong anti-inflammatory, indomethacin. Here's some information about HC: https://www.migrainetrust.org/about-migraine/types-of-migraine/other-headache-disorders/hemicrania-continua/

Anthony, I would say (others might correct me) that it is not uncommon to have that lingering headache and the other symptoms you mention. The lingering headache is sometimes called a "shadow." Some people find that ginger tea can reduce the shadows. Also, an energy beverage might help (see below). Terror is not a completely inappropriate response -- but many people have made CH a whole lot less terrifying and a whole lot more manageable with techniques that are used here. If the neurologist gives you a CH diagnosis, insist on oxygen. You can read about that here: https://clusterbusters.org/oxygen-information/ Even neurologists are very bad at prescribing oxygen, so go prepared to insist. Once you get the prescription, you might want to upgrade your system to be even more effective . . . but for now, one step at a time. You might want to consider starting the vitamin D3 regimen that is described here: https://clusterbusters.org/forums/topic/1308-d3-regimen/ Since it's basically good for you and not very expensive, you don't have much to lose. Pharmaceutically, the standard correct prescription for CH (unless it's contraindicated in some way) is verapamil as a preventive, and oxygen and imitrex as abortives. Injectable imitrex works best, but the nasal spray can also help. Imitrex pills are pretty much worthless. Sometimes a steroid (prednisone) taper is used to try to stop the cycle. Many folks here use other, non-pharmaceutical, methods. You can read about the "busting" approach in the numbered files in the ClusterBuster Files area. Two other things you might try: Drink down an energy shot (such as 5-Hour Energy) or another "energy" beverage at the first sign of an attack, and take melatonin at night (start at 6-9 mg and working up to find a dose that works for you).

Pain', you want oxygen for aborting your CH attacks. Read about it here: https://clusterbusters.org/oxygen-information/ This is going to be your best friend. Doesn't help migraine (for most people), but it's practically a "wonder drug" for CH, once you get your system and your technique right. Prednisone as an abortive? You do not want to be doing that. The vitamin D3 regimen has helped a lot of people with CH, and also seems to be helpful for migraine. https://clusterbusters.org/forums/topic/1308-d3-regimen/ An energy shot (such as 5-Hour Energy) or other energy beverage drunk at the onset of an attack proves very helpful for many.

Well, those things are the two #1 medically recommended abortives for an attack. You can read more about oxygen here: https://clusterbusters.org/oxygen-information/ Not how sure how to further answer your question.

Some quick thoughts, which I'll come back to later if necessary (just going out the door). 1. SPLIT your imitrex injections: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ 2. Your verap dose is low, though if your cycle is only going to last a few more weeks and only happens every few years, there's probably no point in raising it. You're on the correct starting dose, and it makes perfect sense that that was what you were given, but the max is actually 960mg/day. 3. Try an energy shot (5-Hour Energy, etc.) when you feel an attack coming on. 4. I'm pretty sure the tingling you experienced when you were hyperventilating is normal. But I'd have to double-check to be sure. (Read the fifth entry in this thread: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1313766756) 5. Your vitamin D could very well have been low despite how much you were outside. If not "low" for standard medical tests, at least low for effectively treating CH. Get that checked. The D3 regimen works. https://clusterbusters.org/forums/topic/1308-d3-regimen/ In your situation, I'd say it's going to be a better, healthier long-term preventive than the verap. Specifically to your other questions -- Yes, try 15 lpm if that supports a good, deep breathing pattern for you. 15 is also "low" compared to what many use to support good deep breathing. Yes, you can take the trex when your O2 doesn't work.

Yes, you want a non-rebreather mask. The best one, by far, is this one: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit But I don't think they have a fast delivery option. I'd look at amazon.com and see how fast you can get a basic mask. This is the regulator you want: http://www.harborfreight.com/oxygen-regulator-94846.html It's sold at Harbor Freight. There are a lot of Harbor Freight stores in CT; check the store locator at the website. Many people use welding oxygen without any problems. I have to add the disclaimer that I'm not recommending it -- again, saying that I have seen no issues with it in the six years I've been here and in some very close-up situations. In many places, it's hard to find welding-oxygen suppliers that are open on the weekend. The standard advice is that when you go to buy it, do not mention that you want it for medical use. A sixty-cubic-foot tank will be good for a while, but if you can handle a big tank, 80 or 100 or 120 cu ft is preferable. These are big, heavy, and unwieldy, and you have to schlep them back to get them refilled/exchanged. You will want a rolling cart, and you might also want a smaller tank, say 40 cu ft, that you could take in your car, to work, etc. Don't buy a regulator there: they're very expensive and they don't come with the adapter you need to attach the tubing from your mask. Some Harbor Freight stores sell oxygen tanks. I've never seen anything larger than 20 cu ft there, and I've never seen them sold with the O2 in them. You might check to see what they have if you go there.

Well, here's what Peter Goadsby, who is an expert in the pharmaceutical treatment of CH, says about imitrex tabs: >>>Sumatriptan 6 mg subcutaneous, sumatriptan 20mg intranasal, and zolmitriptan 5 mg intranasal are effective in the acute treatment of cluster headache (RCT). Three doses of zolmitriptan in twenty-four hours are acceptable. There is no evidence to support the use of oral triptans in CH.<<< So your doc is not off to a good start. (Google [Goadsby cluster headache] to find that article, "Treatment of Cluster Headache."] Get that oxygen ASAP. You have a prescription? Typically, some preventive is prescribed along with an abortive. Most often, that's verapamil. For now, I would think you'd want a preventive pharma med, too. In the long run, most people here are not pharma enthusiasts. Start the D3 regimen: https://clusterbusters.org/forums/topic/1308-d3-regimen/ Try an energy shot (such as 5-Hour Energy) at the first sign of an attack. Read the numbered files in the ClusterBuster Files section here. You might want to check the "Recommended Doctor" list here to see if there's one near you: https://clusterbusters.org/cluster-resources/ Get back to us!

Nikki', do you have any interest in talking in general about what you do for your CH? Plenty of people here with plenty of ideas and experience. If not, it's fine of course. If so, you might start that discussion on one of the private boards, like Share Your Busting Stories (even if yours isn't a busting story).

Thank you for this observation, hyphen. I know almost nothing about this topic. Opthalmic migraine is also referred to as ocular migraine, or retinal migraine. According to a 2001 survey of more than 1,000 cluster headache patients, and some other surveys, as many as 20-plus percent of people with CH experience auras. I don't know enough (as I've said) to say whether what you have described is similar to the kind of aura that these people in these studies reported. I'm going to try to attach that big study, but I haven't had any luck creating attachments at this new board. It's Rozen and Fishman, "Cluster Headache in the United States of America: Demographics, Clinical Characteristics, Triggers, Suicidality, and Personal Burden."

You will probably have more luck in your search at a site has has a larger and more active membership. You might try joining the Facebook group called "Cluster headaches" or the website www.clusterheadaches.com

Thrilling news, Brian. Completely thrilling. May it continue forever.

Thrilling.

>>He has developed a technique for using the mask to minimize the O2 from being wasted.<< This is a little puzzling to me. The O2 goes into the bag and he inhales it. If he's running it at 25lpm, some might leak out the back of the mask connection (as shown in that video I linked you to), but it's hard for me to think of how O2 could be "wasted" in normal use. He doesn't have to set the regulator at 25 -- he wants to have the flow rate that allows him to inhale as much as he wants as soon as he's ready, without waiting for the bag to fill. For him, that might be 15, or more, or less. Anyway . . . very glad that things are getting better!!!!

It's really hard to imagine that the prodrin and advil are helping you. I guess you would know. The verapamil should help, and it's nice that the cymbalta does. Oxygen is the #1 medically recommended abortive for CH attacks. Many, or most, people here will tell you that it's a life-saver for them. It's not completely surprising that doctors haven't recommended it, because when it comes to CH, most doctors don't have a clue. This document about oxygen might be informative for you: https://clusterbusters.org/oxygen-information/ Many, many people get very good results from the vitamin D3 regimen. I think you should consider it. https://clusterbusters.org/forums/topic/1308-d3-regimen/ Also, many people find that drinking some kind of energy shot or energy drink at the first sign of an attack will often reduce the severity of the attack, or even abort it. Five-Hour Energy or one of those shots can be quite effective. Melatonin at night, too. Starting at 6-9mg and working up as needed. Some of these things might help.

Ryan, what else are you doing? You have oxygen?

Good on the D3. Seems like everybody with CH is low -- in fact, most of the population is low. If I'm remembering right, Batch's target is 85 (you should not take my word for that, though). So, if you have access to an unlimited supply of E tanks at $10/replacement, I think I would just get a 25 lpm 870 regulator overnighted so he has O2 in the short run, unless, as I've said, he's doing so much better that it's not urgent. As Jeebs has said, the prednisone can clear up a CH cycle, or reduce the severity of one, or the CH can come back with a vengeance once the taper is ended. As we've discussed, if you are the one who has to transport the tanks, an MM will be a whole different ballgame than an E.

The Harbor Freight regulator isn't complicated. The gauges are irrelevant since you're not using it for welding. You screw it onto the tank with a big wrench, attach the mask hose to the barbed fitting, and use the wingnut-looking thing in the center to adjust the flow. The only slightly complicated thing about it is that it doesn't have clickable lpm settings like the ones on your current regulator. It doesn't have any lpm settings -- you just turn that thing in the center until you get the flow you want. I've never heard of anyone finding it anything but simple to use after their first experience with it. Not having clickable lpm settings is an advantage because then you can set the flow pretty much as high as you want. This is one of the few welding regulators that comes with a barbed fitting that you can attach a mask to; with most of the others, you have to buy an adapter for that. However, I'm sure there must be CGA 540 medical regulators for sale at amazon, eBay, or elsewhere that will of course come with that fitting for the mask and that will go up to 25 lpm. Regarding the smaller tank, I guess you could roll the dice and hope he doesn't need O2 until you get that MM tank. It's not clear to me whether you still have a tank but will have to turn in the regulator. If that's the case, as I mentioned you can get a 25 lpm regulator that will fit that smaller tank delivered pretty quickly.

The big tanks and the smaller tanks use different kinds of regulators (the small tanks use a CGA 870 and the big tanks use a CGA 540). The welding regulator at Harbor Freight that I linked you to is a CGA 540. I'd recommend getting that one for next week. For the smaller tank(s) you now have, why not get one that goes up to 25lpm? Here's an inexpensive one at amazon: http://www.amazon.com/Medline-Industries-HCS8725M-Oxygen-Regulator/dp/B00BLQKKQQ/ref=sr_1_1?ie=UTF8&qid=1458161494&sr=8-1&keywords=oxygen+regulator+25lpm You can get it shipped for tomorrow for some extra $. If the O2 supplier will let you keep the 15 lpm one for a couple of days, I'd do that (15 might very well be enough for him with the fancy mask) and order the amazon one. Eventually, he'll be doing most of his huffing from the big tanks, but the smaller one is good for car/office/etc.

Others here might have an opinion about your list, but I'm pretty sure your best bet is to ask "Batch," the originator of the regimen. He's great at responding to inquiries like this, but he doesn't show up very often in person at this board. I was told that he recently responded to a PM from here, so you can try that from here: https://clusterbusters.org/forums/user/17422-batch/ If he doesn't respond to you, let me know.

Thanks, eb'. Very, very happy to read of your success. Your dose is already quite low compared to standard lithium doses for CH. I'm pasting below what Dr. Goadsby, the acknowledged expert, wrote about lithium in a paper for the American Headache Society, "Treatment of Cluster Headache." This isn't to scare you -- I can tell you're already aware of potential lithium issues and side effects -- but just so you have the information about what to watch for. I have read elsewhere that rebound headaches from coming off lithium can be quite severe. (I assume that when you say you have tried "all avenues" that includes busting and the vitamin D3 regimen? I'm not suggesting that given your current success you should stop the lithium and try anything else; I'm just curious, and I guess I'm also suggesting that if you might have to get off the lithium at some point for the health reasons noted below, maybe there are some options still available to you.) Lithium carbonate is mainly used in chronic CH because of its side effects, although it is sometimes employed in the episodic variety. The usual dose of lithium is 600 mg to 900 mg per day in divided doses. Lithium levels should be obtained within the first week and periodically thereafter with target serum levels of 0.4 to 0.8 mEq/L. Neurotoxic effects include tremor, lethargy, slurred speech, blurred vision, confusion, nystagmus, ataxia, extrapyramidal signs, and seizures. Concomitant use of sodium-depleting diuretics should be avoided, as they may result in high lithium levels and neurotoxicity. Long-term effects such as hypothyroidism and renal complications must be monitored in patients who use lithium for extended periods of time. Polymorphonuclear leukocytosis is a common reaction to lithium and is often mistaken for occult infection. Concomitant use with indomethacin can increase the lithium level.

In your circumstances, I think you are not an idiot for thinking those things, and I am very sorry that you are suffering so much. Most people here have found one way or another -- through busting, oxygen, D3, melatonin, energy beverages, and even some pharmaceutical medicines -- to not be in the same awful situation as you. Are you interested in exploring any of those things, or do you feel that you have exhausted all the possibilities?