CHfather

I'm very sorry for that ongoing battle, lynn'. If I'm surmising right on your tank sizes, that larger tank holds almost three times as much O2 as one of the smaller ones. Just about two hours' worth at 15 lpm. To the extent that you want to conserve your pure O2 and not use the concentrator-generated O2, you could try Batch's "redneck" method, which uses far less O2. It's described here (consists of hyperventilating with room air; then sucking down some O2 from a tank; then back to room air). But I also might be exaggerating the reduced effectiveness of concentrator O2.

Lynn, Thanks for the tank info. I guess you have 3 Es and an M-60. The shorter, wider one uses a different kind of regulator than the other ones, right?

That is when oxygen works, after the attack has started -- it is for aborting attacks, not preventing them. However, I gather that your attacks are full force as soon as they start, whereas for most people CH attacks ramp up, and so they can be "caught" with O2 before they get too bad. Of course, you should try it, and see if it works. I would not encourage accepting a concentrator for refilling tanks, since a concentrator produces O2 that still has some room air mixed in. The O2 supplier should bring you new full tanks as you use up your existing ones. I am also puzzled by the sizes of your tanks, since you say you can take the "large" one along with you in the car. A truly large O2 tank is quite heavy and unwieldy, and not something one just tosses into the car. How tall are your small and large tanks? A typical large tank is at least 3 feet tall.

Peggy', they're called suicide headaches because the pain is so terrible that death seems preferable. Being able to "push through it" and "go about things that have to be done" suggests that it is not CH. (You have acknowledged that it's not as bad as what people here typically describe, so I'm not telling you anything new.) The fact that Imitrex didn't do anything is another very strong indication that it is not CH, at least if it was injectable or a nasal spray. Pills often do nothing. CH pain can affect all the areas you mention, but the pain is almost always most severe in/around one eye, and that's not really what you are describing.

I'm a little confused (again!) by this . . . but others might not be. You got a large cylinder and a concentrator, or he called the large tank a "concentrator" and said to fill the smaller ones from it? If you clarify this, I/we can maybe comment better. I'd say that typically people use their large cylinders for attacks and the small ones as backups -- or they use the small ones for portability; in the car, etc. Yes, often suppliers don't stock regs higher than 15 lpm. You can buy a higher-flow reg at amazon, eBay, and many other places for about $30. Whether you want/need that would depend first on whether O2 seems to be helping you at all, and then on whether you have to wait for the bag on your mask to fill when you're using an effective breathing strategy at 15. If you have to wait for the bag to fill, 25 lpm will fill it faster and allow you to keep breathing O2 without interruptions. Are you doing the whole D3 regimen -- all the supplements? That's important. I would say that if the Benadryl has had no effect for three weeks, there's not much point in continuing that.

sleepless, what jon' says is all correct. For most people, prednisone seems to give some pain-free days but the pain returns when you stop it (or during the taper down). On the other hand, it is rarely administered in the way that Dr. Goadsby (a CH expert) describes as the standard: "1 mg/Kg up to 60 mg for four days tapering the dose over three weeks is a well accepted short-term preventive approach. It often stops the cluster period, and should be used no more than once a year to avoid aseptic necrosis." https://americanheadachesociety.org/wp-content/uploads/2016/07/Peter_Goadsby_-_Treatment_of_Cluster_headache.pdf ("asceptic necrosis" is when bones die from lack of blood flow. hips, shoulders, knees can be severely affected). You should look into the vitamin D3 regimen, which has helped lots and lots of people. See "D3 regimen" in the ClusterBuster files section. If you're going to use Imitrex, also see the file in that section (on page 2), "Extending Imitrex." You can get two or three shots from a single autoinjector. If you used the search bar to look for references at this site to prednisone and didn't find many, you probably didn't have it set to "all content," since there are many pages of references to pred found in that search. This is just FYI . . . We're always glad when people ask questions!

I see that there are eBay sellers of RC that explicitly say they ship to UK. I know that some UK folks have had success getting truffles shipped to them from companies in the Netherlands. I think I recall some folks naming the companies that shipped to them. Maybe if you put the word truffles into the search bar (top right) you might find some of those posts.

Since you and I just posted at the same time, just letting you know that there's a post from me above yours here.

The good thing about diagnosing hemicrania is that whether or not the drug indomethacin treats it is the diagnostic indicator of whether you have it. Indomethacin is a kind of nonsteroidal anti-inflammatory drug (an NSAID), so I don't think it will require stopping other treatments. It can be quite rough on the digestive system, though. I still doubt that you have CH, but answers to some of your CH-related questions: Depakote is sometimes effective for CH, but it's not a first- or second-line prescription for CH. Lithium, which also treats bipolar, is used to treat CH. However, it's only recommended to be given to people with chronic CH as a kind of last resort, because of the side effects and the fact that severe rebound attacks can occur when lithium is stopped. This is a good discussion of standard CH treatment: https://americanheadachesociety.org/wp-content/uploads/2016/07/Peter_Goadsby_-_Treatment_of_Cluster_headache.pdf People take the D3 regimen year-round, to be sure they keep their D levels up (and often because they think it just makes them feel better). Yes, you can get D3 in larger dosages. Abortive medications (oxygen, triptans) are only used in cycle, preventives like verapamil can be eased off when out of cycle if you have a reliable sense of when the cycle will start again.

I do, too. I think your neuro's position is ridiculous.

Oh, boy . . . What I'm saying here is just what I know, or think I know. I suppose others might correct me. Percocet just doesn't work for CH. That's a given, though I suppose there are exceptions to every rule. It isn't really effective for migraine, either. No, it is not normal to feel light-headed after using O2. How abnormal it is, I don't know. I don't remember reading about it even once in the past 7 1/2 years, which would include at least 100 conversations with people using O2. Racer1_NC and Batch, among others, know far more about this than I do. You could PM them from the envelope symbol at the top right of the page. If you are hyperventilating, maybe -- but you'd know that. If anything, the low flow rate would seem to make it less likely that you'd have breathing-related issues. Are you having any trouble inhaling? If O2 doesn't work, it would seem to be another sign that you don't have CH, although this might not be a fair test (and, as you say, it's not clear even when you should start on the O2). There's a "symptom checker" at WebMD.com. I looked for sneezing, nausea, and headache. Didn't see anything there that really makes sense. Sorry . . .

Roadie, Hemicrania continua??? https://www.migrainetrust.org/about-migraine/types-of-migraine/other-headache-disorders/hemicrania-continua/

You've heard from two of the very best, Angela. I am only going to clarify that energy "shots" (the small ones of about 2-3 ounces, such as 5-Hour Energy), often have more caffeine than the larger energy "drinks" of about 8-12 ounces, such as Red Bull or Monster. An energy shot is easier to drink down quickly than the larger energy drink. As jon' says, check the labels.

Nothing significant to add to fella's superb response. If phenergan, an anti-histamine, worked for you, it's possible that Benadryl will, too. Recommended dosage is 25mg every 4 hours, and 50mg at night, with the usual warnings about drowsiness. I share fella's doubts about whether you have CH. When you say "Lately they have been lasting about three weeks," do you mean that you have an ongoing severe headache for three weeks, or that you have attacks frequently during a three-week period and then they go away? If you do have CH, strong pain-killers (such as Toradol) are not going to help. The strongest analgesics/opiods don't work. As fella says, oxygen, verapamil, and sumatriptan are the first-line treatments, and maybe some prednisone to perhaps create some painfree time. If you do have CH, it's possible that caffeine will help you (there's some of that, but not enough in Excedrine Migraine). You might try drinking an energy shot, such as 5-Hour Energy, when an attack begins.

Here's one thread about it. You can see more if you type "jesus shot" into the search bar at the top right side of the page (and set it to "all content"): https://clusterbusters.org/forums/topic/4773-the-jesus-shot/#comment-50552

I have to admit that I'm completely confounded by your symptoms and the fact that Percocet helps. I'm not a doctor, and I have no idea what's going on. (CH attacks are almost always one-sided, and it's uncommon but not unheard of for them to be accompanied by an aura.) Regarding oxygen, you should be able to call the supplier who delivered this equipment to you and just ask for a large cylinder of oxygen, a regulator that goes up to at least 15 lpm, and a non-rebreather mask (if that's not what you received). I suppose a lot depends on what prescription the doctor wrote. The supplier might never have had a patient with CH. You can tell them that you'll send them some medical literature related to oxygen for CH. If they say they'll look at that, I can provide it to you. Of course, it concerns me that it made you light-headed. Many oxygen suppliers have a respiratory therapist on staff. That person might or might not know anything about CH. (There was a report a few years back in the medical literature about a person who had "paroxysmal" sneezing attacks after undergoing deep brain stimulation to treat CH, so I suppose that might suggest some relationship, but that's all I know about that.)

Sorry -- NO, it isn't. You should try it, because it might work, or at least help. But in general that flow rate is much too low, and a concentrator doesn't generate pure enough O2. Plus, most concentrators are noisy. You want cylinders/tanks, with regulators. Lordy, this is frustrating. As I noted above, the prescription should have read 15 lpm. (Not frustrated with you, of course, just with this damn crazy system.) Are you sure it's a non-rebreather mask? Does it look more or less like this: https://justnebulizers.com/pediatric-or-adult-non-rebreathing-mask-case-of.html? It's not things you stick in your nose, right? If you have that mask, cover the little circle of round holes, if it doesn't have anything behind it, when you inhale. That's to keep room air from mixing with the O2. Cut the strap. Hold the mask firmly to your face with your hand. Drink a 5-Hour Energy or some strong coffee as you start on the O2. Inhale the oxygen as fully as you can, hold it for a moment, exhale fully, and inhale again. If you have to pause to wait for the bag to fill before you inhale again, your flow rate is too low. There are other breathing strategies you can use, but I'm just giving you the most straightforward one. Let us know how this goes.

jon', it does indeed seem surprising if it's not about the money. Although the costs stated for O2 in some places seem incredibly high, so maybe there is a money factor. And maybe GlaxoSmithKline and the other triptan sellers lobbied hard for their stuff to be all that was available for aborting.

"Expert Opinion: Coverage Gaps Leave Cluster Headache Undertreated" http://www.neurologyadvisor.com/migraine-and-headache/cluster-headache-oxygen-therapy-coverage/article/700033/ Promising that this is getting coverage within the medical community.

Seems that more clinical trials are being undertaken, which will be completed this year, after which the company can request FDA approval. Unfortunately, this is an injection that has to be administered in a doctor's office, so it might take a very adventurous doc to try it for CH (although I guess studies of the effects of ketamine on CH might encourage this "off label" use). Pills are supposed to be available not long afterward, though. Seems like there are also some other ways of delivering ketamine being looking into, also. See "United States" on this page.

A prescription will typically read something like "Oxygen therapy for cluster headache. 25 min at 15 L/min with non-rebreather mask." ("L/min" is liters per minute). A doctor might use some abbreviations ("NRB" for non-rebreather, for example) but I'm sure they're not necessary. If you could get him to write it for 25 L/min instead of 15 L/min, that would be great, but it would be pushing it.

Vitamin D level is usually included in standard blood panel. If you're going to use those sumatriptan injectors, be sure to read the file "Extending Imitrex" in the ClusterBuster Files section (it's on the second page, I think). Virtually everyone can get by with less than 6 mg. For some, 2mg is sufficient; 3 works for pretty much everyone. The Facebook group that the doctor mentions is "Cluster headaches." I'm giving you the specific name because there are other CH groups at FB that are suspect to some of us.

Richard. The course of CH is unpredictable. Some people have long remissions, and some get "worse." However, with proper treatment, the "worse" can be managed so it's certainly not nearly as bad as what you've been going through -- and there is significant hope for effective preventives on the medical horizon. There are two categories of treatments, preventives and abortives. What works as an abortive is, first and foremost, oxygen. Effective; no side effects. You want a prescription for high-flow O2 (at least 15 liters per minute) with a non-rebreather mask. Oxygen in cylinders, not from a concentrator. Sumatriptan virtually always works as an abortive. If nasal spray didn't work for you, injections almost certainly will. Significant side effects, but it does stop an attack. As a preventive, I'm going to say that the vitamin D3 regimen is the best way to go. Good for you as well as being effective. Read about it in the ClusterBuster Files section. Verapamil can be effective, but many people need dosages that are higher than what most doctors know to prescribe: up to 960 mg/day. This level has to be gradually worked up to. There are a lot of other things that will help you, such as rapidly drinking an energy shot such as 5-Hour Energy at the first sign of an attack. Read around more (I know it's a pain, but you'll learn a lot) and you'll see other things that help (ice water, melatonin, Benadryl, ...). But from a doctor, what you want are an O2 prescription, verapamil, and sumatriptan/Imitrex. You might not use the verap and the trex (and the trex is frightfully expensive), but it's good to have the scripts. This site was founded by people who discovered that psychedelic substances, often taken at a sub-psychedelic level, will very often end cycles and might prevent future cycles. You can read more about that in the numbered files in the ClusterBuster Files section.

blue, Follow the advice of Batch and Denny and it'll get you going in a very good direction. I remember at a conference some years ago a small woman, maybe 5 feet tall, maybe 100 pounds, who could use O2 faster than a 60 lpm setup could provide it. (Her screen name, for those who go way back, was Tingeling, which means Tinkerbell in Norwegian.) I think Batch's method should work for you, because it's not dependent on flow rates (see this post), and I would think a demand valve would also work. MrGeeney will know, I'm sure -- and just as important, he's likely to care about making sure you get what you need.

To the best of my recollection, we have only had one other nursing mother here. She was permitted to use oxygen and verapamil. She was probably already using oxygen, which would have made it easier than trying to get a new oxygen prescription from a doctor who already doesn't know very much. I don't know what it was about verapamil that made it permissible to her doctor. The Facebook group "Cluster headaches" has quite an active membership (it was founded by some folks from here). You might be able to get some answers there about nursing mothers and meds. It's a closed group, so you have to ask to be accepted, but usually that doesn't take very long. Be sure you go to that group (there's a photo of three smiling people at the top of the page). There are several CH-related groups at FB, and some are a little fishy.