CHfather

Because I'm not a scientist, I am going to assume that what you report as "nmol" is the same as the measure I see most often used for D levels, which is ng/mL. If it is the same, I can quote Batch (the developer and fastidious student/teacher of the D3 regimen) as saying, "A 25(OH)D serum concentration of 70 to 90 ng/mL is sufficient for the 82% who respond to this regimen." For those who don't respond, he has recommended getting up to 100-150 ng/mL. If your current 114 number is ng/mL, I'm going to say you're fine, and all you want to do is sustain that level. Having seen one person who overdid it with the D3 with substantial consequences, I'm advising caution. BUT I say that as a non-expert, only using the expert's (Batch's) opinion as a starting point. I'd advise you to communicate directly with Batch, who you can reach here: https://clusterbusters.org/forums/user/17422-batch/ To me, he's one of the handful of CH heroes, not only because of developing and advancing the D3 regimen, but also because he is virtually always highly responsive and very helpful to anyone who contacts him. He will also like having you as another positive data point in his result tabulations.

These are pills? (I can't see that Aurobindo, which is a company based in India, makes any sumatriptan meds besides pills, but my search has been far from exhaustive.) If so, it just could be because pills hardly work for CH anyway. But maybe you have had success with pills in the past -- or maybe this wasn't pills that you're taking. FWIW, here's someone else saying that Aurobindo trex is ineffective for them: https://www.reddit.com/r/migraine/comments/3i9ds9/sumatriptan_generics_do_you_notice_any_difference/

Thanks, Mercy! When you say it has been effective for you most of the time, I have two questions. (1) Do you take it when you get an attack, as an abortive, or as a daily pill? The latter, I assume, but I'm not sure from your message. (2) Are you definitively diagnosed with CH, or do you have one of the hemicranias? Thank you.

Ideally, you will empty your bag when you inhale and it will refill while you are holding the air in your lungs and then exhaling. It should refill fast enough that you don't need to wait for your next inhale. You use the flow rate adjustment on your regulator to achieve this state -- a higher flow rate if you are having to wait for the bag to fill before you can inhale, a lower flow rate if the bag is filling more quickly than you are inhaling. Since most people find, eventually, that a 15 lpm flow rate is too slow to refill the bag as needed, if you're using a flow rate much lower than 15 you might not yet be optimizing your O2 use.

Do you feel confident that you have the right O2 setup and are using it properly?

There are people in the world who have some migraine symptoms and some CH symptoms. http://www.ncbi.nlm.nih.gov/pubmed/17367596 There are studies that indicate that O2 will also sometimes help migraine: http://www.ncbi.nlm.nih.gov/pubmed/22560101 As we've discussed, HC is a reasonable diagnosis to pursue, easily tested with indomethacin.

Yes, some people get nausea (36% in one study), to the point of vomiting (17%). If you are able to find the full article of Rozen, "Cluster Headache in the United States of America" online, it will have answers to quite a few of your questions. I remember it being very hard to find the whole article and not just the abstract, and unfortunately this board doesn't allow for attachments (or I'd just attach my copy). Rozen also broke out the same data for a report on cluster headache among women. I don't think this is the most reliable study, for a number of reasons, but there were a lot of people who filled out the questionnaires.

Of course, I would try it -- indo is a pretty simple test to see if you have a hemicrania and not CH. Some CH responds to indo, too. It's hard on the guts, though, and is often taken along with something to protect the stomach lining.

ginger tea, ginger candy . . . i suppose grated ginger if you could stand it. Here's info from another source: >>>A teaspoon of ginger simmered in a cup of water, sweetened to taste, is a pleasant way to hold off the shadows for a couple of hours. Ginger doesnt dissolve well, so simmer the powder or finely chopped ginger root for a while, and keep stirring while you drink. In hot weather, a very strong ginger ale or ginger beer can do the trick enjoyably. Look in health food stores or delis for brands such as Reeds Extra Ginger Brew, Ginger Peoples Ginger Beer, Natural Brew Outrageous Ginger Ale or Blenheim 1903 Hot Ginger Ale. The usual ginger ale used for mixers, such as Schwepps or Canada Dry, is not strong enough. A company called The Ginger People makes strong ginger candy in several varieties (www.gingerpeople.com)<<< Some people have found that OTC pain meds, such as Excedrin Migraine, help with shadows.

Nooooo!!! We need you here!

Ditko', hoping for good things for you to continue. Good work on splitting those doses! As Jeebs said, you're in a great position for busting with truffles, something that has helped lots of people with CH, so do look at those busting files -- and do seriously consider the D3.

Kelly, I don't think your symptoms rule out migraines. The women thing is, I think,being altered as more women are accurately diagnosed with CH, so that's not a big factor for me arguing that maybe you don't have CH. Aura is somewhat rare with CH -- studies have put it between 2% and about 20% (a big range, I know; I don't really trust the 20% figure, but 2% seems low). Stuffy nose is pretty common with migraine, and so is eye pain. An hour to an hour and a half once would have been considered pretty long duration for CH, but we've definitely seen lots and lots of attacks that long and longer. One distinctive characteristic of CH as opposed to migraine is that people having CH attacks can almost never sit or lay still. Since I'm not a doctor, I'll stop there. You can look up the list of CH symptoms using google, of course. The oxygen might be a good test, since it usually does not help people with migraines much, or at all. The sumatriptan helps both -- most CH meds are hand-me-down migraine meds, but not oxygen. I don't know about the additional tests you mention, but they sound reasonable. A couple of folks have indeed found pituitary growths that could be managed.

Kelly, you have a prescription for oxygen but no other prescriptions? Not Imitrex or Verapamil, for example? Hit the O2 as soon as you feel an attack coming on. It's not clear to me how big the gap is between your wonky vision and the attack itself, so you might have to experiment a little. (Blurred vision/aura, while not completely uncommon, are not present for many or most people with CH.) You should probably read this for some tips about breathing strategy and to be sure you are getting the right equipment: https://clusterbusters.org/oxygen-information/. You might want to call the oxygen supplier before they come, because mistakes are often made: You want oxygen in tanks, not a concentrator, and you want at least one big tank (an M tank) and at least one smaller one for portability (an E tank). You want regulators that go up to at least 15 liters per minute. I say "regulators," plural, because the big tank and the small tank use different kinds of regulators. And you must get a non-rebreather mask. This might all be new to your supplier, if they don't have other customers with CH. When they bring you the equipment, try to get them to set it up for you and give you the basics of how to use it. Tape up any open holes in the mask you get and remove the strap. Hold it to your face to breathe in, remove it to breathe out (being sure you don't get any room air in). Hold the air in your lungs for a few moments before you breathe out. Look down toward your feet as you do this breathing. Also at the beginning of an attack, try quickly drinking an energy shot, such as 5-Hour Energy. That usually speeds up the abort. The D3 protocol, as Jeebs says, will make a big long-term, and maybe short-term, difference. You can read about that over in the ClusterBuster Files section, where you can also read about busting in the numbered files, for which, as Jeebs also says, you are very well positioned since you're apparently not using any pharma meds.

I'm so sorry that happened. I wish it was surprising, but it isn't, at all. Most doctors, even neurologists, know very little about CH. Finding a doctor who knows anything, and who cares about learning, is very rare. It's even more rare to find one who will prescribe O2. Completely crazy, but that's the way it is. You have a few options. One is to go back to your long-time doctor, particularly if she is the one who diagnosed your CH, so at least you aren't starting from scratch. Maybe she will agree to be educated in order to help you. You can bring her some of the relevant medical literature: This is the double-blind, placebo-controlled trail that was published in the Journal of the American Medical Association: http://jama.ama-assn...02/22/2451.full To get the American Headache Society's guidelines for treating CH, type this (without the brackets) into Google: [goadsby "treatment of cluster headache"] This is an large-scale anecdotal reporting about the use of oxygen for CH: http://www.clusterhe...urvey-final.pdf See if you can get 1 and 2 to your doctor or someone in her office, maybe the one who asked you about O2, unless you think she is too dense or defensive. But she did ask; and you can answer. Even with this completely persuasive information, many doctors will still resist prescribing O2, in part because (although they usually won't admit it) they don't know how to write the prescription. If you can tell her how to write the prescription, it might help. It should read something like this: "Oxygen therapy for cluster headache. Up to 25 min of 15L/min with non-rebreather mask." (In both cases there, the "min" is for "minutes.") She can fax it to an oxygen provider, or give it to you to shop for an O2 provider. If he won't write it for 15 lpm, but only for something less, just take that -- you can get your own regulator once you have the tanks. The discussion of how many tanks and what sizes is between you and the oxygen provider. Hopefully, you'll get that far and you can get back to us about specifics. With almost any doctor you find, you will still meet with ignorance and resistance. If you can get to a headache center, that's your best bet (still not guaranteed) for a good doctor (and their wait times can be pretty long). There is a list of recommended doctors by state here: https://clusterbusters.org/cluster-resources/ In general, these docs are recommended because they understand oxygen. There was one guy who called doctor's offices and walk-in clinics and asked if they had patients with cluster headaches and if they prescribed oxygen to those patients. He got yeses at a walk-in clinic and was able to get his O2 quickly. (I have a theory that walk-in clinics/urgent care places are more likely to know about CH better than doctors. Just a theory.) You can set up a system using welding oxygen, which many people do. You'd need to buy or rent some tanks, a regulator, and a mask. You can do all that pretty quick if there's a welding supply place near you, but of course insurance isn't going to cover that. In the short run, some people recommend getting your nose up against a cranked-up air-conditioning unit, or in your freezer, and breathing deeply through your nose. Not the same as O2, but people have said that it helps. I have no experience with this.

Very nice response from jon', covers the bases. I would say, just from observation, that most people like the chilled drink better . . . but there are some who prefer it room temp. Gotta find what works for you. There are people who go straightaway for the higher-caffeine shots (I can't personally see any reason to down an 8-ounce drink instead of a 2-ounce shot, but, again, some people do -- I suspect that either they think, wrongly, that the bigger drink will have more caffeine, or that they just started with RedBull or Monster and it worked for them, and they don't want to change). But I think starting with the 5-Hour Energy is the way to go. There's a list here of caffeine levels in beverages: http://www.caffeineinformer.com/the-caffeine-database

I can't specifically answer your question about the attacks being spaced out, except to say that it seems to me to be unusual but probably not unheard of. CH patterns are so variable. Similarly, regarding your earlier question about sleeping in, I think a lot of people get attacks when they alter their sleeping patterns, which would include sleeping in and particularly seems to include napping. Not universal, but very common.

The pills don't work for at least 75% of people. Maybe the nasal spray is less expensive than the injections? Most pharmacies have reduced-price coupons for the injectors and the spray (look at a place like goodrx.com), and you can split your injections to get 2 or 3 from one injector ( It's still not cheap by a long shot, but could be worth it. Please let us know what you get from your O2 supplier. You need big tanks (M tanks) and a smaller more portable one or two for work (E tanks), which you can negotiate with the supplier. Tanks of O2, NOT a "concentrator," which makes O2 out of room air. The prescriptions should be for a regulator that goes up to a flow rate of 15 lpm (liters per minute), and a non-rebreather mask. I strongly advise you to call your supplier and discuss all this with them before they deliver anything to you. If your prescription is for less than 15 lpm, you can buy a regulator separately. Most oxygen suppliers have very little experience with CH, and they just might bring you a concentrator with those things you stick in your nose (cannula), because that's what most of their customers get. Read this: https://clusterbusters.org/oxygen-information/ Two Excedrin migraine pills have as much caffeine as one 5-Hour Energy shot, and a lot more than one RedBull. It's believed that some stuff in the energy drinks helps with CH; there's nothing in the Excedrin besides the caffeine that will help. Try increasing the amount of melatonin you take at night. In the short run, you should probably also be on some kind of pharma preventive, such as verapamil, unless that is contraindicated by your heart issues. For most people here, busting has been the best strategy in the long run for long-term preventive effectiveness and no lasting side effects. Read about busting in the numbered files in the ClusterBuster Files section of the board.

Chiropractic and acupuncture probably won't help you. Might be worth trying, of course. Some people get some relief. It's not a "structural" problem. You can split your injections: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ OXYGEN!!!! OXYGEN!!!! OXYGEN!!!! https://clusterbusters.org/oxygen-information/ The "D3 regimen": https://clusterbusters.org/forums/topic/1308-d3-regimen/ Melatonin at night, starting at maybe 6-9 mg and working up if/as needed Maybe a pharma preventive. Verapamil is usually the first choice. Busting: Look through the numbered files in the ClusterBuster Files section and ask questions

emily', Without saying that coping with CH at work is simple, because it's far from that, we should know what you're now using to abort attacks. Do you have oxygen? Injectable sumatriptan (Imitrex)? Have you tried energy shots/energy drinks? In the long run, of course, preventing cycles or making them less severe is also critical for being able to work. Can you tell us what preventives you're using?

Dan, sorry you got hit again -- glad you were able to stop it quickly. Schedule changes seem to rough on CH. This is pure speculation on my part, but you might consider upping your melatonin a little to help adjust to the schedule change. Here are three resources regarding O2: This is the double-blind, placebo-controlled trail that was published in the Journal of the American Medical Association: http://jama.ama-assn.org/content/302/22/2451.full To get the American Headache Society's guidelines for treating CH, type this (without the brackets) into Google: goadsby "treatment of cluster headache" This is an large-scale anecdotal reporting about the use of oxygen for CH: http://www.clusterheadaches.com/O2/Oxygen-survey-final.pdf Not sure what you might do with these: At the least, copy 1 and 2 and bring them with you; or, send them in advance. If your doctor has a nurse or nurse practitioner, we have found that they can be good advocates. Even with this completely persuasive information, many doctors will still resist prescribing O2. If you can tell him how to write the prescription, it might help. It should read something like this: "Oxygen therapy for cluster headache. Up to 25 min of 15L/min with non-rebreather mask." (In both cases there, the "min" is for "minutes.") He can fax it to an oxygen provider, or give it to you to shop for an O2 provider. If he won't write it for 15 lpm, but only for something less, just take that -- you can get your own regulator once you have the tanks. The discussion of how many tanks and what sizes is between you and the oxygen provider. Hopefully, you'll get that far and you can get back to us about specifics. Yes, you're right about staying on the D3. If you're in a high-pollen season right now, you could try adding a dose (standard dose) of benadryl twice a day. That seems to help. If your D3 level is not quite low, I will be very, very surprised. Keep up the fight.

A great message, Dan. Sounds to me like you are doing all the right things. And, yes, John Fletcher is a great, generous, extremely knowledgable guy -- as well as being a fabulous advocate for CH awareness. I doubt that he'll see your thanks here, unless he's been lurking, but I'm sure you have communicated that to him directly. When you say this >>I have yet to get O2 from my ridiculous family Dr...but am seeing him in 2 weeks for a prescription,<< it sounds like you're confident that he'll give you that prescription. If you're not confident, maybe you'd want to bring some O2-related materials with you, and even show him what a prescription should look like. He's probably never written one for O2. Let us know if we can help you with anything to make his decision easier, if you feel like you need it. There have been a couple of people here who have found that putting their feet in very hot water will knock back an attack. That seems more tolerable to me than the ice-cold shower, so maybe something you might try if you need it in the future. Just for my anecdotal record-keeping, do the 5-Hour Energies keep you awake when you take them in the night? I have come over the years to believe there just might be such a thing as a jinx related to discussing PF status, so I'll just wish you the best, thank you very much for posting this positive story and good information, and leave the rest unsaid.

I've never quite understood the idea that a demand valve will conserve O2 . . . but I'm not saying that I'm not missing something. In my mind, it's not like your high-flow, big-bag system is spewing O2 all over the place -- you're sucking it all down, and it's either in your lungs or waiting for you in the bag. So I feel like if you need that high flow and big bag to breathe the most effective way for you, you're going to be hitting the button on the demand valve pretty often and sucking down as much O2 as you now do. Someone who knows more than I do -- RACER, maybe, but probably someone else -- said that same thing, and it makes sense to me. However . . . on that youtube video I sometimes post about assembling and using the O2ptimask, the guy (Michael Arnold) says that even at 25 lpm, O2 is definitely leaking out of the back of the tube thingy (at about 5:40 here: ). It's probably worse with your earlier version of the mask, and I don't know whether the new version, the "ClusterO2 Kit," has better engineering to reduce that. Can't beat the demand valve for simplicity, for sure. No regulator fiddling, no bag concerns, just O2 when you want it, which is at least a small plus during an attack.

I'm glad you're getting your M tank today, Jeebs. Good Lord, why does it have to be such a nightmare! Are you keeping those E tanks they're bringing you? Problem with the demand valve system is that you can, in general, only get it by prescription. Sometimes they appear on eBay. There's nothing there now that is obviously a demand valve system -- there is this, http://www.ebay.com/itm/LSP-Resuscitator-EMT-Demand-Valve-Rhino-Regulator-Aspirator-Mask-O2-Hoses-New-/391356603889?hash=item5b1eabddf1:g:WtcAAOSwvgdW5tpt, but I can't tell exactly what it is. If you're interested, you might post the question over at FB, since I see that 8 of them have been sold and I wouldn't be surprised if at least one of the was to someone there. I would think that with your Flotec and your redneck bag, you ought to be getting plenty . . . but maybe not??? (I remember at a conference our friend Tingeling (a tiny little gal) demonstrated that she could suck down 65lpm in no time and have to wait for a normal reservoir bag to fill, so I know some people have that kind of lung capacity.) I snagged a demand valve for my daughter a while back, and she loves it mostly for the mask, which is very soft and comfortable. But if you're getting enough flow from your current system, a demand valve really isn't necessary. Anyway, I hope all of this is moot soon and your San Pedro busting works.

sierra, are you splitting trex injections (if you're still using it)? 2 mg (out of the 6mg in the autoinjector) is enough for most people. most people have the newer type of injector that's covered in the video at the bottom of this post: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ this type is a pain to get open at first, but once you learn how to do it, it's not so bad. highly recommended.

sierra's post is really helpful, I would only disagree slightly to say that some people get good results from the Zomig spray, and it might be a sensible place to start if only because the injections are so expensive and you can get so few injectors at a time. you can split the injectors so that you can get more than two injections a day . . . but really, if you have an effective oxygen system you will almost certainly not be needing so many injections