CHfather

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.

Gosh, that's frustrating and disappointing. If you want to give it one more try, you could PM 1961mom, who is one of the founders of that group. She was once very active here, and still visits from time to time. You can PM her from here: https://clusterbusters.org/forums/user/17179-1961mom/ She knows who I am (she knows who many people here are), so if you want to use my handle when you communicate, please go ahead and do that.

Nice! Thanks for letting us know, and congratulations for taking responsibility for your care.

I have heard that "Cluster Headache Support Group" on Facebook is quite hostile to anything non-pharmaceutical. The friendly one is just called "Cluster headaches."

interestingly, dr. goadsby, the ch expert, has compared the pain of ch to having a limb amputated without anesthetic.

yes, you're right--ibuprofen won't touch a real CH attack. the nasal spray might be sumatriptan, which actually can help with a CH attack. if it is sumatriptan, i suppose you might try it and see what happens. i have never heard of CH presenting with such mild symptoms that a person doesn't even bother taking meds to try to relieve it. most people remember very well their first CH attack, and there was nothing mild about it. then again, i think i know a lot about CH, but i was surprised to see a red eye listed as a common symptom in so many places, so i can't say for certain that your doctor is wrong, as much as i think that she is.

gosh, this is horrible. i have no idea what to say about your eye or your pain, or why someone at the ER would be expected to figure out what's going on. CH pain certainly isn't going to be continuous, and relatively mild, for five days. has this doctor prescribed anything for your (supposed) CH?

Welcome! I look forward to your participation here! Thank you for coming here.

Just adding my agreement to what jms and Jeebs have said -- from the symptoms you describe, it does not sound like you have CH. That oxygen didn't help is also a clue, but since oxygen is often administered ineffectively for treating CH and you don't say how it was administered to you, we can't rely on that. Red eye is very commonly reported as a symptom of CH, although like Jeebs, I haven't heard about or seen much of it in actuality. This is from Harvard Medical School, for example: >>The eye on the painful side is red and watery<< (http://www.health.harvard.edu/pain/headache-when-to-worry-what-to-do); and this is from our own ClusterBusters website: >> On the same side as the pain, the eye may become red . . ." (https://clusterbusters.org/about-cluster-headache/).%C2'> There are plenty of others that can be found from googling "red eye" and "headache." But red eye does not equal CH, and nothing else you describe sounds really CH-like to me.

Just adding my agreement to what jms and Jeebs have said -- from the symptoms you describe, it does not sound like you have CH. That oxygen didn't help is also a clue, but since oxygen is often administered ineffectively for treating CH and you don't say how it was administered to you, we can't rely on that. Red eye is very commonly reported as a symptom of CH, although like Jeebs, I haven't heard about or seen much of it in actuality. This is from Harvard Medical School, for example: >>The eye on the painful side is red and watery<< (http://www.health.harvard.edu/pain/headache-when-to-worry-what-to-do); and this is from our own ClusterBusters website: >> On the same side as the pain, the eye may become red . . ." (https://clusterbusters.org/about-cluster-headache/).%C2'> There are plenty of others that can be found from googling "red eye" and "headache." But red eye does not equal CH, and nothing else you describe sounds really CH-like to me.

In terms of workability, RC is far preferable to HBWR. I don't know what quality you'll get from a shop (just don't know; not saying it will be poor quality). www.tranceplants.net is based in Montreal, and is considered a top-quality supplier. Might be less expensive, too. In any event, you'll want at least 100 seeds for two hopefully-preventive doses. Some folks actually find the self-injecting preferable (and two or three jabs for the price of one, plus less aftereffects, is hard to ignore as a benefit).

You've made a very eloquent description here of what CH is like for many people, l'm. I am sorry that it's like that for you, too. I'm glad you are on the D3 regimen, and I hope you are doing all the elements of it. I would make a few suggestions: 1. If you can come to a ClusterBusters conference, you will meet lots of people who will know exactly what you are feeling. The 2016 conference will be in Austin, Texas, sometime in the fall. I think the dates have been announced, but I'm not sure what they are. 2. Some people find that they can hold off cycles by preventively "busting" -- using low doses of drugs that are hallucinogenic at higher doses (psilocybin mushrooms and rivea corymbosa seeds are the most common). Have you read about that here? Rivea corymbosa (RC) seeds are inexpensive, legal to buy and possess (just not legal to consume), and there is virtually never any kind of psychedelic experience associated with taking them. Since this is the time of year when might start a cycle, it might be a good time for you to try some RC. If you want to know more, ask. 3. Do you know about extending Imitrex to get more injections from each injector? Saves money, still works, and you're taking in less of that medicine. You can read about it here. https://clusterbusters.org/forums/topic/2446-extending-imitrex/ 4. Oxygen (maybe combined with an energy shot or energy drink) can stop an attack pretty quickly, so you that don't need Imitrex for every attack, or even most attacks. Many people go to that first before they use the Imitrex. 5. The Facebook group "Cluster Headache" is a very, very supportive group of people. You might consider joining that group. I have heard that another FB group, "Cluster Headache Support Group," is also good as long as you don't mention busting . . . but the people I know best and like most are at the "Cluster Headache" group (it's the one with the "pinned post" at the top about 5-Meo-DALT, which might also be an option you'd want to consider). None of this will work any miracles (well, it might, but no promises), but cumulatively it might have some benefit for you. Wishing you the best.

The new sumatriptan injectors are harder to get open, but not that hard. Plenty of online videos to show you how. Yes, quantity and cost are still issues, but if you can get three quick aborts per injector, it's a lot less bad. You gotta give your O2 the best chance of succeeding -- high flow rate (25 lpm or more), good mask, maybe an energy shot or some other likely abortive just as you get on the O2 . . . a lot of folks who weren't helped by more conventional setup are getting really good aborts with this one. The D3 has a really high success rate, sometimes pretty quickly. Please give it serious consideration.