CHfather

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.

It can be frustrating to try to get a CH diagnosis, as I've said. Most doctors just aren't familiar with CH. If your doctor insists on treating you for migraines, that isn't completely bad news. Two standard treatments for migraine are also treatments for CH. One is a preventive, verapamil. It probably won't help you much in the beginning, unfortunately, because it has to be started at low levels and monitored for its effects on your heart. But it might help. An abortive often prescribed for migraine is sumatriptan (Imitrex/Imigram). This also works to stop CH attacks. BUT the most helpful kind for CH is injectable sumatriptan. That's what you want. At the very least, you want the sumatriptan nasal spray, which helps most people with CH. Pills will probably not help you. I just don't know whether a steroid taper is a migraine prescription. With CH, people often go on a steroid taper of about ten days or two weeks at the beginning of their treatment, at the same time as they start verapamil. Usually the steroids eliminate or reduce the pain while they are being taken -- and that gives more time for the verapamil to take effect as a preventive. Your doctor might typically prescribe other things for migraine. If you can, you should try to get those migraine meds I just mentioned prescribed if your doctor insists on a migraine diagnosis. The bad thing about being treated for migraines instead of CH is that oxygen, which is a very effective abortive for CH attacks and has the added benefit of not having the side effects associated with the other medications I have mentioned, is not prescribed for migraine. You should come as close as you can to begging for an oxygen (O2) prescription because it's the thing you want most. Your doctor has probably never written a prescription for O2 for a "headache" condition. I can tell you that the prescription should read something like this: "Oxygen therapy for cluster headache. 12-15 lpm for 15 minutes. Non-rebreather mask." (A doctor might use abbreviations for some of things.)

As fella' said in his first post, there are some things you can try right now to stop an attack or at least make it so it's not so bad. Later (as soon as possible), a doctor can prescribe you some things that are will help more reliably, but for right now . . . 1. Drink down an energy shot such as 5-Hour Energy at the first sign of an attack. Don't wait -- just do it. Many people prefer them very cold. The ingredient in these that helps most is caffeine, but many people think the taurine and maybe the B vitamins also help. If you don't have an energy shot handy, try a very strong cup or more of coffee. (For a large proportion of people, taking this caffeine during the night doesn't keep them awake.) 2. Drink ice water through a straw aimed at the roof of your mouth. A lot of it. Your goal is to create "brain freeze." 3. Very hot water, however it helps you most. Some people find that standing in a tub with your feet in very hot water helps them. Some have said that alternating between the hot tub and some relatively cold room air helps. In addition . . . Some people find that it helps to deeply breathe cold air, from an air conditioner if you're inside or outside if the air is cold where you are. Some people find that vigorous exercise helps. Vigorous exercise outside in cold air can be beneficial for some. Melatonin taken at night can help. The body gets quite low in melatonin during cluster headache periods. Many start with about 9mg and some work up well into the 20-plus mg range. Some people find that their CH periods coincide with times of high pollen or other kinds of allergies. One expert recommends taking 25mg of Benadryl every 4 hours, and 50mg at night. If you do take this Benadryl dose at night, don't also take the melatonin. Two people here have said that they got benefit for stopping or reducing an attack from combining the juice of one or two limes with a teaspoon of baking powder in water, preferably bottled water. They both took this along with an energy shot. As fella' and Denny also said, the vitamin D3 regimen described in the ClusterBuster Files section of the board can help a lot, although it probably won't help immediately. See what you can do to get started with that. There are a lot of videos on youtube of people having CH attacks. Maybe your mom would be willing to watch some to see what this condition can do to people. All the things you are experiencing, from the willingness to harm yourself to make the pain go away, to the dread of when another attack will come, to the lack of understanding from people who should be more on your side, are things many people here have gone through. It's a terrible condition to have, but you can manage it so it doesn't wreck your life. You are at the worst of it now, but it will get much better. AND there are new medicines on the horizon with great promise. You have one very important thing going for you: You have what seems to be an accurate diagnosis. Most people go through years and years of misdiagnosis and mistreatment -- teeth pulled, sinus surgeries, medications that don't help, being told that there is something wrong with them mentally -- before they somehow get a correct CH diagnosis. You are on what seems like the right path to get needed treatments pretty quickly. Do read the numbered files in the ClusterBuster Files section to understand about another option, "busting," that has helped many.

Fabulous! Thanks for the update!

Nothing to add to fella's great post, except two questions: How long do your attacks last; and are you able to sit or lay still during them, or do you feel agitated and have to move around (or rock back and forth)? Mostly, I wanted you to know that there are many of us here ready to do our best to help you.

greg, if you put the word gamma into the search bar at the top right of any page and search "all content," you'll find quite a few remarks about the device. Some high praise, a lot of okay-but-nothing-special, and some downright negative. At least at the last time it was discussed, it was pretty darn expensive, hundreds of dollars a month if I'm recalling correctly. I recall from the clinical trials that it didn't do as well at aborts as a good oxygen system would be expected to do, and it is considerably less effective for people with chronic CH than those with episodic. There was some suggestion in the research reports, and some suggestion from some people commenting here, that it might have preventive effects. If it works, portability seems to me to be its major advantage, but the cost as it has been reported here would be a factor for most people.

Rod, do you find that this is effective for aborts, or for helping with O2 aborts? I think the basic "waterness" of it would be appealing to avoid the general crappy feeling from drinking a whole lot of energy shots, but it's a lot of liquid (16 ounces) to deliver that 180 mg of caffeine, and there's no taurine (which, as you know, some think is a valuable component for aborting/reducing an attack).

This is a small but important issue -- you want to take the calcium about 8 hours apart from when you take the verap.

Did you know that there was a time, not so very long ago, when "leonine features" were considered to be a characteristic of people with CH? A doctor suggested that in 1972, but it was still being discussed in the literature in the 1990s (https://www.ncbi.nlm.nih.gov/pubmed/1468913?dopt=Abstract), and still appears in some CH-related information today. It seems ridiculous now (to me at least), along with other once-accepted "truths" such as that women don't get CH (they're just overreacting to migraines); that people with hazel eyes are predisposed to CH; and that people with CH tend to be substance abusers. I think these things were probably all well-intentioned efforts to get a better handle on CH, but of course they all also led to harm in terms of getting an accurate diagnosis.

Well said. Best wishes to all.

Thank you for all this info. I'm not sure it's pertinent here, since your O2/rebound pattern is older than this and the D3 seems to have corrected any effects from lithium, but lithium is notorious for creating rebound attacks when its use is discontinued. Some medical literature suggests only prescribing it for chronic CH since the rebounds from getting off it are so bad (and the side effects in general are so typically noxious). I also had a hard time understanding Batch's hyperventilation instructions, but what I think is correct is that there are a series of very short, very deep inhale/exhale "cycles," each lasting just a few seconds, and that you do ten of those cycles with room air, in a total of about 30 seconds, before you start on the O2. I'm going to paste below what I think is his most recent writing about this. You might not have seen his "redneck reservoir bag" approach; these instructions are part of it (link to it is below). Yes, it could be that staying on the O2 longer after an abort will hold off some subsequent hits. I think "5-10 minutes" is the standard advice. This is the doggone thing that makes anecdotal evidence so challenging. My daughter (the person in my family with CH) never took any CH meds except, for a short while, gabapentin, for the first ten years she had CH. She didn't even have oxygen. But her cycles got longer and worse, pretty much year after year. Nice story about Ben Khan. I wonder how many people with CH are indebted to someone who reached out a hand to them. I know that as a family member, the kindness that Bob Wold extended to me about 8 years ago will never be forgotten (and still brings some tears of gratitude to my eyes). Somebody here might be in touch with Mr. Khan. Here's Batch on hyperventilating when using the "red neck" method. You can see the whole file, with details about using the redneck bag, here: https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/ When you've hyperventilated for 30 seconds (ten complete cycles) per the procedures below... [These are the procedures] The exhale part of this procedure is important. Exhale rapidly until it feels like your lungs are empty... They're not. At this point you do the abdominal crunch and hold the chest squeeze until your exhaled breath makes a wheezing sound for a second then throw your shoulders back and inhale as deeply as possible then repeat the exhalation with a crunch in one fluid motion. Ten of these complete cycles in 30 seconds should start to push your body into respiratory alkalosis... (Remember the movie "The Andromeda Strain") On the tenth exhalation, hold the squeeze/crunch until your breath makes a wheezing sound for at least 3 seconds... or until you stop wheezing... This will squeeze out another half to full liter of exhaled breath that's highest in CO2. You'll know you're doing this procedure correctly when you feel a slight tingling or prickling on your face, lips, hands, lower legs and feet. This is called paresthesia.

I am guessing that Batch will show up soon to give the most reliable answer to your D3 question. If not, you can PM him (though I am curious to see his response, so I hope he replies here). Thank you very much for the lithium info. I will keep that in mind. Yesterday, on another thread, I suggested that rebound attacks after O2 aren't a real thing. Would you mind saying a little more about yours? In the most recent study of rebounds, the general conclusion was that at proper flow rates and with "better techniques in oxygen application," rebounds were pretty much a thing of the past (they were reported by Kudrow at the very beginning of O2 use, in 1981). But if you get them, you get them. Did you stop using O2, or have you just accepted the likelihood of rebounds? And did Ben Khan tell you about rebounds, or about O2? Thank you.

This is probably unhelpful. I'm just adding a little extra info that might help someone who knows what he's talking about -- which I don't, but Batch and Racer and perhaps others do -- to maybe figure this out. The eBay ad says "for use with pipeline systems or the new BOC CD cylinder." I don't know what a "pipeline system" is, but the "new BOC CD cylinder" mentioned in the ad might be what scramble has, and it does indeed have a Schrader valve, into which it appears that the end of the eBay product would fit. The BOC CD cylinder also has a built in regulator/"flow selector." BOC CD product info here: http://www.bochealthcare.co.uk/internet.lh.lh.gbr/en/images/504370-Healthcare Medical Oxygen Integral Valve Cylinders leaflet 06409_54069.pdf Beyond that -- and the observation that this eBay rig doesn't come with a mask or tube, which might be easy or hard to acquire; and the probably significant twist of this being an N2O/O2 system and not just O2 -- I got nothing.