CHfather

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?

Jeebs is a very wise and observant guy -- though I'm sorry he seems to have been right about this. I'd suggest calling your O2 supplier to review what the new prescription means -- including at least one M tank that they will have to replace (they're heavy). They should give you two Ms and at least one E, plus a cart/stand. At higher flows, your hubby is obviously going to be going through O2 more quickly. I would recommend ordering that Harbor Freight regulator (or going to get one, if there's a store near you), if your supplier will only provide a 15 lpm regulator (or if you have to keep paying that exorbitant monthly amount for a regulator). I think you're wise not to up the lithium, even though the current dosage is kind of low for CH treatment. At least let's see what the D3 does, and how manageable it becomes with the O2, energy shots, and other non-pharma strategies, such as melatonin. The typical medical recommendation for CH is that lithium should only be prescribed for chronic CH, because of its side effects and because severe rebound headaches are common when lithium is withdrawn. Has he ever taken verapamil or another blood pressure med as a preventive? It would be surprising to go with lithium without first having tried verap. There are risks associated with the D3 regimen, if it is overdone (way overdone). The guy who developed it, whose screen name is Batch, has examined its ins and outs for several years, with lots of data from actual users. Batch is just about the nicest and most generous person you could deal with. I'm going to send you his email address in a PM, and you should really feel free to contact him with any questions (like, why the magnesium, or what's the risk of kidney stones). He will write back to you promptly, I'm sure. I'm pinning some big hopes on the O2. It can take awhile for people to really figure out how it will work best for them. I think you said you ordered the ClusterO2 Kit, which was formerly called the O2ptimask. Here's a video about how to assemble it and how to use it.

Not normal (the apparent effect of the D3) but who knows? Nothing "normal" about this condition, and sometimes people do get very quick results. Fingers crossed here with you. Most of us have found that we trusted doctors way too long before starting to search on our own. It's my experience (I'm also a supporter) that sometimes some people with CH become very despairing and even resistant to learning about new things that they might try, because they have had their hopes raised so often with nothing to show for it. So you did get on it; that's the important thing. I'm glad you found us!

Ask the O2 company for a cart/stand, too, so you can move those big tanks around and have them safely stored. What kind of energy shot? Five-Hour Energy? As a general rule, you want the ones with more caffeine (interestingly, the small shots tend to have more caffeine than the larger drinks, such as RedBull). I would still look into Jeebs's very wise suggestion about splitting the triptan injections. It is not simple to take apart the generic injectors, so you want to have some time to work on that and have the shot ready if he needs it, and have him knowing what he has to do to inject. Gets easier. Lower dosage probably = less rebound effect. I would suggest that you might call your O2 company on Monday and ask them what your prescription says, and whether they know that for CH you need at least 15 lpm and big tanks. He is fortunate to have such a GREAT supporter in you . . . and you are fortunate to have a guy who's willing to keep learning and trying. Congratulations to you both.

Regarding the oxygen, that's nuts. The tanks are obviously too small (and I don't know why you have to go in instead of them coming to you). You can buy a 25 lpm regulator for an E tank online for <$30. http://www.amazon.com/s/ref=nb_sb_ss_c_0_16?url=search-alias%3Daps&field-keywords=oxygen+regulator&sprefix=oxygen+regulator%2Caps%2C172 and http://www.ebay.com/sch/i.html?_odkw=oxygen+demand+valve&_osacat=0&_from=R40&_trksid=p2045573.m570.l1313.TR0.TRC0.H0.Xoxygen+regulator+25+lpm.TRS0&_nkw=oxygen+regulator+25+lpm&_sacat=0 This might be an issue for your O2 supplier, not the doctor, although I guess it was the doc who prescribed 6 lpm. A typical prescription will read something like "O2 as needed for cluster headache, NRB mask." Then it's up to the supplier to know what "as needed for CH" means -- or up to you to educate the supplier. A lot of people with CH, probably 15% or more, use welding oxygen. We haven't heard of anything adverse happening in the six years I've been here (but it would not be fully ethical for me to recommend it). Without insurance, it's less expensive, and the regulator fittings on all tanks are the same (like the Harbor Freight one I referred you to). We can discuss this more if you're interested. I would urge you to consider getting that CH-specific mask I linked to above. Folks love it! People also love the demand valve system (no bag on the mask, just press a button to release the O2 and let go of it to stop the flow). Demand valves are generally available by prescription only, but sometimes one can find them at eBay. There's one offered there now, but of course I can't speak to its quality. http://www.ebay.com/sch/i.html?_odkw=oxygen+demand+mask&_osacat=0&_from=R40&_trksid=p2045573.m570.l1313.TR0.TRC0.H0.Xoxygen+demand+valve.TRS0&_nkw=oxygen+demand+valve&_sacat=0 I'm not expert on meeting the requirements of the D3 regimen. I would guess that it doesn't matter where he gets the A and boron. Maybe a more knowledgeable person will chime in.

Well, 6 lpm raises more questions for me. He does have an actual mask, right -- not things that go into his nose (called cannula)? And I guess it must be a tank of O2, and not a machine that makes O2, called a concentrator, if you can change the regulator (it's built in on the concentrator). Tank(s) is what you want. What size tank or tanks does he have? At a high flow rate, he will need at least one large tank, called an M tank. Two would be better. An M tank is about 3 feet high. Often people get an E tank, which is about 2 feet high. That ain't enough, unless they're willing to bring refills every couple of days. Having an E tank in addition to M tanks is good, because the E is something you can take in the car. If he has an M tank and a mask, and you don't want to wait until Monday for a regulator and you're willing to spend some money, you can get a very good regulator that will give him all the flow he needs at a Harbor Freight store. It will only fit a bigger tank -- the regulators are different for an E tank and an M tank. This is the regulator from Harbor Freight: http://www.harborfreight.com/catalogsearch/result?q=oxygen+regulator If you go to the website, you can check the Store Locator there to see if there's a store near you. The point of higher flows is so that the reservoir bag on the mask is always full of air when he is ready to inhale -- he doesn't have to wait, or to take smaller breaths so the bag stays full. For some people 15 lpm works okay, but many/most get better results from a regulator that goes higher. You might want to read over this document, which has some other advice in it: https://clusterbusters.org/oxygen-information/ Be sure you do all of the elements of the D3 regimen -- there are reasons for everything in there.

So sorry for how your husband is suffering. You ask about what you can do right now to break the cycle. The "busting" strategy generally discussed here to break cycles would require him to be off the depakote, topamax, imitrex, maxalt, and lithium for five days, and some of those meds cannot be stopped cold turkey, they have to be tapered down. So busting might not be what you're looking for. (There are people who will tell you that all those meds are actually making things worse for him, that they are either separately or in combination causing "rebound headaches." I wouldn't be surprised if that's true. They sure don't seem to be helping.) I can only think of two things that might be effective quickly preventively, and they're more pharmas. One is a course of steroids, cortisone usually, which helps break cycles for some people. The other is verapamil, which helps some people as a preventive. He could try the vitamin D3 regimen -- https://clusterbusters.org/forums/topic/1308-d3-regimen/. That sometimes reduces a cycle or even ends it fairly quickly, but it's far from a guarantee. In the long run, it's something he probably should do that will help with the next cycle. For it to have the greatest likelihood of helping in the short run, he'd almost surely want to do some version of the "loading" that is described in that document, but that would be up to him. The only thing I have to add is that you really want to be sure that his oxygen system is optimized for highest effectiveness. A high flow rate (at least 15 lpm, but 25-plus lpm is better) to support deep and continuous breathing, and the mask designed for people with CH, which is called the ClusterO2 kit: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit. This can help him get faster aborts. Some people quickly drink down an energy shot or energy drink at the first sign of an attack, and find that it helps reduce the severity of the attack, or even sometimes abort an attack. My only concern about this is how much stuff he already has in his system from all those drugs. I wish I could be more helpful, and I hope someone else here will be.