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Showing content with the highest reputation on 03/13/2016 in all areas

  1. 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!
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  2. 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.
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  3. Sorry to hear of the high cycle crisis situation there, but glad to see you've been advised well, and are taking swift action with the high flow O2 and D3 regimen. Hoping the steroid burst kicks in any second now to quell the attacks, and that your hub sees an instant, dramatic improvement of his ability to abort attacks in a non-toxic manner as soon as the high flow 100% O2 system is in place! Meantime, when he uses the triptan injection, has he adopted the potentially game changing partial dose approach yet?
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  4. 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.
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  5. 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.
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  6. 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.
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