High-Flow Oxygen Therapy for Cluster Headaches | Treatments

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    High-Flow Oxygen Therapy for Cluster Headaches

    Oxygen is an essential tool for dealing with cluster headaches (CH). For most people with CH, oxygen when properly used will abort an attack within 15 minutes—often in less time than that. Unlike many other prescribed abortive medications and treatments, oxygen has no negative side effects. Virtually, the only people who cannot use oxygen to treat CH are those with serious lung disease or similar conditions.

    If you or a loved one has cluster headaches, there are a variety of ways that Clusterbusters can help you through the process. We have informational pages about treatment including alternative options, a list of ongoing research, and a vast message forum where you can go to ask any questions you may have about living with and treating this form of Trigeminal Autonomic Cephalalgia. We realize the debilitating and torturous nature of the attacks and are available at all hours to help.

    Oxygen can change your life—or even save it.

    Yet, a major study reported that 34 percent of people in the U.S. with cluster headaches have never tried oxygen. It also reported that half of the cluster headache sufferers (also known as “clusterheads”) using oxygen never received instruction in its proper use. If you are one of these people, you are missing what can be a very important, highly-effective way of treating your cluster headache attacks.

    (See bottom of page for PDF downloads to bring with you to your doctor, for personal use, or to give family members, friends, and coworkers.)

    There seems to be a lot of misinformation regarding oxygen and aborting cluster headache attacks. Clusterbusters has compiled this resource using research, contributions from doctors and patients, and several organizations.

    Disclaimer: This is provided for information purposes only; advice on the treatment or care of an individual patient should be obtained through consultation with a licensed physician who has examined that patient and is familiar with that patient’s medical history as well as appropriate treatment for cluster headaches. 

    Why 100% Oxygen Helps Cluster Headaches

    The cause of cluster headaches is unknown, and the reason why high-flow, 100% oxygen works as the most effective abortive treatment is also unknown. The first indications that oxygen therapy could help cluster headache attacks happened in the 1930s on accident during an experiment with cats to see how vessels on the brain’s surface reacted to oxygen. It caused vasoconstriction (blood vessel widening). During a cluster attack, these vessels vasodilate, or widen, which is thought to be why cluster headaches are so excruciating, as the trigeminal nerve can swell up to seven times its natural size during an attack. However, now it’s believed that introducing 100% oxygen decreases the activation of your parasympathetic nervous system.

    As the research progressed, researchers including Drs. Alvarez, Horton, and Kudrow, found that it was essential to provide 100% oxygen at a higher flow rate to abort cluster headaches. At first, 6-8 liters per minute (lpm) through a nasal cannula was the suggested rate, but today, no less than 15 lpm with a non-rebreather mask is indicated for attacks. Patients use up to 25 lpm to stop attacks faster. In some cases, smokers require a higher flow rate than nonsmokers. Those who haven’t responded to oxygen in the past, may find that a higher flow rate (or just the correct mask) will stop the pain.

    Essentially, it’s unknown why it works, but ample research has found that 100% high-flow oxygen aborts cluster headache attacks. However, you need the right flow rate, the right mask, the right breathing technique, and the right tank sizes.

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    How Effective is Oxygen for Cluster Headaches?

    The effectiveness of oxygen (O2) as a CH abortive has been demonstrated in controlled medical research and reported in prestigious journals. The leading study is “High-Flow Oxygen for Treatment of Cluster Headache,” which was published in the Journal of the American Medical Association in 2009.3

    In this study, an O2 flow rate of 12 lpm was used. That is now considered a relatively low flow rate, and yet 78 percent of the participants in the study (which included both chronic and episodic CH patients) experienced significant relief within 15 minutes. No side effects were reported. (In an earlier study, even lower flow rates—7 lpm—produced positive results.)

    Based on this research, American and European treatment guidelines list inhalation of oxygen as the abortive of choice for cluster headaches. The guidelines state: “The first option for the treatment of acute attacks of cluster headache should be the inhalation of 100% oxygen with at least 7 liters/min over 15 min . . .” (Sumatriptan injections are also listed as a primary abortive option.) Please note that 7 liters per minute is now widely considered to be too low of a flow—and the summary chart of recommendations within the guidelines calls for 15 lpm.

    I’ve Tried Oxygen and It Doesn’t Work for Me

    Oxygen might work for you even if you have tried it in the past without success.

    A lot has been learned about increasing success at aborting with oxygen. Before giving up on oxygen, please consider the suggestions found in the other sections on this page, including higher flow rates, a demand valve delivery system, a top-quality mask specifically designed for people with cluster, and perhaps a different breathing strategy.

    For some people with CH, conventional oxygen therapy can gradually decline in effectiveness, until they feel that oxygen no longer really works satisfactorily for them as an abortive. Some others report that oxygen therapy has never worked for them. While it is true that in a small number of cases oxygen therapy is for some reason ineffectual, many people have experienced good results with equipment and methods that go beyond the conventional ones.

    Higher flow rates

    If you are using a non-rebreather mask or other breathing device (such as a breathing tube) that has a reservoir bag, you can only take in oxygen as fast as the bag refills after each inhalation. Since rapid deep breaths, or even hyperventilation, are the preferred breathing techniques (see more discussion of this below), a flow of 15 lpm often is not enough to provide a steady supply of O2 in the reservoir bag for each inhalation. Many people with CH are finding that higher flow rates, of 25 lpm and higher, ensure that they do not have to wait between inhalations. Although we cannot recommend this, many people with 15 lpm regulators get good results from replacing the reservoir bag on their mask with an unscented garbage bag or turkey bag.

    Demand Valve System

    With a demand valve system, you never have to wait for a reservoir bag to fill. Oxygen is immediately available as long as there is O2 in your tank. A demand valve system requires a certain type of regulator—one with a DISS fitting that bypasses the lpm setting on the regulator—so you must be sure you have the correct parts, and a demand valve can be costly at $350 or more. However, many have benefitted from them when other systems have not worked to abort their attacks. Your oxygen supplier, or a person at a facility that sells demand valves, can help you obtain the right equipment.

    O2ptimask

    The O2ptimask is designed to replace the typical non-rebreather mask on a conventional (non-demand-valve) O2 setup. It was designed specifically for people with cluster headaches to get as much O2 inhaled as possible as quickly as possible. It forms a strong seal with the face (and comes in different sizes to accommodate different face sizes). It has no vent holes with “flapper valves”; the reservoir bag is much larger than on a conventional non-rebreather mask, and it is very durable. Many people with CH say that it aborts an attack in about half the time as a standard non-rebreather mask, particularly when used with a regulator with a flow of 25 lpm or higher.

    Breathing Strategies

    It is always valuable to get as much O2 as possible into your lungs, and to remove as much room air as possible from your lungs. People with CH use many strategies to accomplish that, and you should try different methods to find what works best for you. There are many discussions of breathing strategies on the message boards at www.clusterheadaches.com, and you can find them by typing an appropriate keyword such as breathe, inhale, or hyperventilate into the search engine there. With a 15 lpm regulator, the breathing strategy will typically involve breathing more rapidly and more deeply than your normal breathing and being sure to exhale fully each time.

    Your respiration rate should be 24-30 in/out breath cycles per minute, whereas a typical “normal” respiration rate is between 12 and 20 cycles per minute. (Most people with CH find it difficult to count their respiration cycles while they’re trying to abort an attack, so these numbers are more to give you an idea of the difference between “normal” respiration rates and how you might breathe in O2.)

    Some suggest breathing in through the nose if possible (if you’re not too congested), and out through the mouth. You might try this to see whether it improves your success at aborting your attacks.

    Flow Rate

    At flow rates of 25 lpm and higher, or with a demand valve, it may be feasible for you to breathe more assertively, forcibly exhaling as much air as possible from the lungs and inhaling as fully as possible. A “hyperventilation” method has been used with success by some people. To read more about that method, enter the word hyperventilate into the search engine at the message board at www.clusterheadaches.com. Here is a link to one entry—See particularly the fifth entry, by “Batch,” on this page.

    CAUTION should be used with hyperventilation and any of the breathing strategies described here, if you choose to try them.

    Energy Drinks

    Many people with cluster headaches report that they abort their attacks more rapidly when they quickly drink an “energy drink”—such as RedBull, Monster, or 5-Hour Energy, containing caffeine and taurine—at the first sign of a CH attack, followed by immediately using O2. Caffeine alone (in a strong cup of coffee, for example) can also help.

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    How to Get an Oxygen Prescription for Cluster Headaches

    The first thing a primary care physician, neurologist, or headache specialist should do after diagnosing you with cluster headaches is to write you a prescription for oxygen therapy at 12-15 lpm with a nonrebreather mask. However, doctors are often not as knowledgeable as we might want them to be about oxygen as a cluster headache abortive: 44 percent of O2 users in the study mentioned above had to suggest it to their doctors themselves. You must advocate for yourself in this regard.

    You might have to help your doctor write your prescription. 

    So, know what you want: two or more big tanks, a smaller one or two for local travel or the office; at least a 15 lpm regulator for each type of tank (try for a higher-flow regulator); and a non-rebreather mask. Your doctor should write “As needed for cluster headaches” on the prescription.

    Beware: If the prescription you receive is for a low flow rate or does not specify a flow rate, a provider might give you a “concentrator” instead of a tank or tanks. A concentrator is a machine that creates oxygen out of room air. Concentrators are essentially useless for aborting cluster headaches, because they produce low flows and less than 100 percent pure O2, so be sure this is not what you are going to receive. (A very small number of people with CH do report that they can abort using a concentrator, but it is very far from the best option.)

    Remember, getting the prescription for the tanks is the most critical thing, because you can purchase a regulator and a mask for yourself if you have to. And remember also—an oxygen concentrator will be nearly useless to you. Often a doctor will just write a prescription for O2 without specifying much more. It’s important for you to follow up with your oxygen supplier so you know you’ll be getting what you need.

    If you do not get O2 from your doctor and no satisfactory reason is provided to you, seriously consider firing your doctor and finding another one. Call around. Try to find a neurologist who has experience with cluster headaches, or at least a headache specialist or headache clinic. This will increase your odds of getting a prescription for oxygen. You can also check our message boards for recommendations in your area.

    Tips for Working with an Oxygen Provider

    For many people, relationships with oxygen suppliers are very positive. In other cases, an oxygen supplier might not know much about cluster headaches or the equipment required to treat them. If you find that your supplier lacks knowledge, consider emailing, faxing, or otherwise providing the key articles about oxygen and CH to them.

    You should call your oxygen supplier as soon as possible after receiving your prescription, to be sure the supplier understands what you need.

    You should be sure that your O2 provider sets up your tank, regulator, and mask, shows you how to use them, and covers the necessary safety precautions. It’s all quite simple, but you don’t want to be figuring anything out for yourself that others could be telling you. You will also need to post a sign on your apartment door or somewhere outside your home that oxygen is in use.

    Oxygen Cylinders and Tanks for Cluster Headaches

    After your doctor has prescribed you high-flow oxygen, a medical oxygen supplier will then deliver you the cylinders, or “tanks.” You will want to have at least one large oxygen cylinder—more than one is much better—and at least one smaller, more portable cylinder—again, more than one is better. Remember that tanks of different sizes may require different types of regulators, so be sure that your supplier provides the proper type.

    Large cylinders/tanks are generally “M” size; smaller cylinders are generally “E” size.

    Tank
    Type
    Tank Pressure
    (psig)
    Cubic
    Feet
    Nom. OD
    (inches)
    Nom. Lgth
    (inches)
    Nom. Wt.
    Empty (lbs)
    H 2015 251 9.04 51.00 130
    M 2015 125 7.00 43.00 75
    E 2015 20 4.14 25.75 16
    D 2015 10 4.14 16.75 10

    As you can see from the table below and the relative sizes in the graph, an M tank contains many times more oxygen than an E tank. At 15 liters per minute, an M tank will provide approximately 198 minutes of oxygen (approximately 10 20-minute sessions). At 15 liters per minute, an E tank will provide approximately 35 minutes of oxygen, enough for less than two 20-minute sessions.

    It’s wise to keep a log containing the flow rate and number of sessions you are able to get from the first cylinder, and then calculate how long your supply should last.

    If you are using a lot of oxygen (for example, because you are aborting attacks frequently or because you’re using a very high flow rate), you can go through even a large tank quite quickly. Many oxygen prescriptions will just specify oxygen without specifying the size or number of tanks, essentially leaving that up to you and your supplier. Two or more large tanks and two or more small tanks are desirable.

    The large tanks are quite heavy (about 70 pounds) and not portable. You will almost certainly want at least one smaller tank for your car or for work (or for any place where you are likely to be out of immediate access to your larger tanks). Since the smaller tanks run out quickly, it is wise to have more than one.

    You can buy a stand, or a wheeled cart or “caddy,” to hold your tanks—or some medical suppliers will provide them.

    Use great caution when storing or transporting tanks—nowhere near an open flame; and nowhere they can fall, get rolled around, or otherwise become damaged (for example, where the valve could be broken off).

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    Oxygen Flow Rates and Regulators for Cluster Headache Treatment

    The medical oxygen supplier should also provide you with a regulator and a non-rebreather mask. Many people with cluster headaches prefer to get their own higher-quality mask and, in some cases, their own higher-flow regulator.

    The study reported above in the Journal of the American Medical Association 5 used flow rates of 12 liters per minute [12 lpm]. Most people with CH prefer at least 15 lpm. (Generally, a regulator that goes to 12 lpm will go to 15 lpm.) Some can use lower flow rates, at least during their first periods of using O2. The issue is that the reservoir bag attached to your mask should fill quickly enough that you can breathe deeply and steadily without waiting.

    Increasingly, people with CH are finding that higher flow rates, of 25 – 60 lpm, work best for them, ensuring that they always have enough oxygen coming through the system to inhale deeply. Higher flow rates also support the hyperventilation breathing method that many people with CH prefer.

    You might have to order a higher-flow regulator for yourself. Some people have been able to acquire prescriptions for higher-flow regulators from their physicians. The demand valve system (discussed more in “optional oxygen equipment) allows for uninterrupted flow of oxygen. Different size tanks require different types of regulators. So, don’t order a regulator until you know what kind of tank you have.

    Ordering a Regulator

    Many people order a regulator from eBay. Other online retails also sell regulators you can purchase for low prices including regulators on Amazon. Here are other examples of medical supply companies who sell oxygen regulators that go up to 15lpm and higher.

     

    These links go directly to the regulator pages for purchase:

    The Cluster Headache Oxygen Mask

    The oxygen supplier will likely give you nasal cannulas and/or a “non-rebreather” mask, but their mask is not going to give you 100% oxygen. You’ll need to cover the holes located on the sides of the nose piece. You want to use a mask or other device that delivers the oxygen to you without including any outside air—a non-rebreather mask is preferred, but you can also use a mouthpiece. The O2ptimask (shown right) is designed specifically for people with cluster headaches and includes both a mask and a mouth piece. Many people have found that they get best results with the O2ptimask.

    You can also find standard non-rebreather masks at many internet locations. Enter the words “non-rebreather mask” into a search engine to find suppliers. Please note that these masks are quite inexpensive, so if you see a price quoted of more than a couple of dollars, it is probably for a case of masks, not just for one.

    With a standard non-rebreather mask, there are two things you should consider doing:

    • Most non-rebreather masks have a set of holes on each side of the mask. At least one set of holes typically has a gasket in it that closes when you breathe in and opens when you breathe out (a “flapper valve”). Often there is no gasket—just holes—on one side. You should consider closing these holes, so you breathe in only the oxygen from your tank, with no outside air mixed in. You can put tape on them to close them permanently, or just put your thumb over them when you breathe in and take your thumb off when you breathe out.
    • Consider cutting off any elastic strap that would hold the mask to your face, for two reasons:
      • Since many CH users can fall asleep while they’re using oxygen, they will continue draining oxygen from their tank if the mask is still on.
      • If they do fall asleep and the mask stays on, they might inhale oxygen for too long, which can in theory cause lung damage or suffocation.

    A tight mask seal is very important. Facial hair, or a mask that is too large for the face, can interfere with getting a tight seal. Masks come in different sizes. Be sure you get one that’s the right size for your face. The O2ptimask comes in different sizes.

    Also, some people can find that a mask feels uncomfortable, a little claustrophobic, or they can’t get a tight-enough seal. You can remove the mask and breathe directly from the plastic valve. It is also effective to use a tube or “mouthpiece” for breathing. With an O2ptimask, the mask itself can be removed, leaving a breathing tube you can use.

    Cleaning Your Mask

    You should clean your mask regularly, and also make sure that the flapper valves in the mask are working properly. A good method of cleaning your mask is to use a benzalkonium chloride antiseptic towelette. Benzalkonium chloride is a rapid-acting surface disinfectant and detergent that is active against bacteria, certain viruses, fungi, yeasts, and protozoa. Benzalkonium chloride towelettes come in packets available over the counter at any drugstore, and also available at many online shopping sites.

    If you are hypersensitive to cleaning agents, dipping a clean paper towel or tissue in a mild solution of a hypoallergenic soap will work equally well in keeping your mask clean. Once you’ve cleaned your O2 mask, place it inside a Ziploc bag to keep it free of dust and lint when not in use.

    In a worst-case scenario of an unhelpful supplier, you might get a nasal cannula (two tubes that go into your nostrils) instead of a non-rebreather mask. Like the concentrator discussed above, these are generally useless for dealing with cluster headaches. However, some research suggests knocking the flow rate down to 5 lpm and using a nasal cannula after aborting an attack can prolong the time between attacks or prevent a nighttime attack.

    NEVER, under any circumstances, breathe directly from the tank itself—it is at extreme high pressure and is very dangerous. There is no way to do that safely. 

    Breathing Techniques to Abort Cluster Attacks with Oxygen

    It is always valuable to get as much O2 as possible into your lungs, and to remove as much room air as possible from your lungs. People with CH use many strategies to accomplish that, and you should try different methods to find what works best for you. There are many discussions of breathing strategies on the message boards at www.clusterheadaches.com, and you can find them by typing an appropriate keyword such as breathe, inhale, or hyperventilate into the search engine there. With a 15 lpm regulator, the breathing strategy will typically involve breathing more rapidly and more deeply than your normal breathing and being sure to exhale fully each time.

    Your respiration rate should be 24-30 in/out breath cycles per minute, whereas a typical “normal” respiration rate is between 12 and 20 cycles per minute. (Most people with CH find it difficult to count their respiration cycles while they’re trying to abort an attack, so these numbers are more to give you an idea of the difference between “normal” respiration rates and how you might breathe in O2.)

    Some suggest breathing in through the nose if possible (if you’re not too congested), and out through the mouth. You might try this to see whether it improves your success at aborting your attacks.

    At flow rates of 25 lpm and higher, or with a demand valve, it may be feasible for you to breathe more assertively, forcibly exhaling as much air as possible from the lungs and inhaling as fully as possible. A “hyperventilation” method has been used with success by some people. Using higher flow rates, many prefer the hyperventilation method.

    20 minutes of inhalation is the recommended maximum time at one “sitting”—if that does not abort an attack, it is generally recommended to wait five to ten minutes and then try again. However, even breathing oxygen continuously for one or two hours does not appear to pose a significant health risk to individuals with normal cardio-pulmonary functions. While we don’t recommend 2 hours of oxygen use to abort a cluster headache, you will need to experiment and establish what works for you individually.

    To read more about that method, enter the word hyperventilate into the search engine at the message board at www.clusterheadaches.com. CAUTION should be used with hyperventilation and any of the breathing strategies described here, if you choose to try them.

    Many people with cluster headaches report that they abort their attacks more rapidly when they quickly drink an “energy drink”—such as RedBull, Monster, or 5-Hour Energy, containing caffeine and taurine—at the first sign of a CH attack, followed by immediately using O2.

    Since some people fall asleep when an attack is aborted, you should not use a strap to hold the mask to your face. If your mask has a strap on it, you can cut it off, or simply not use it. Hold the mask firmly against your face with your hand.

    After you have aborted an attack, anecdotal reports suggest you should continue inhaling oxygen for several minutes more after ending the attack. Many find continued breathing of oxygen for a period of time after the attack has ended (approximately as long as the time it took for you to abort the attack) to be very beneficial in preventing soon-recurring attacks. This is highly variable, some find a few minutes helpful and some stay on the O2 for up to 20 minutes.

    Experiment for yourself: vary the time and even the flow rate, individualize this by trial and error. Some cluster headache patients will knock the flow down to 4-6lpm after aborting an attack and breathe normally with a nasal cannula for 15-20 minutes to elongate the pain-free time between attacks.

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    What You DON’T Need for Oxygen for Cluster Headaches

    We’ve talked a lot about the basics of what you need to get and use oxygen properly to abort cluster headaches, but there are several things you need to be careful of to make sure you’re not getting the wrong equipment including:

    • No oxygen concentrator
    • No nasal cannula
    • Don’t smoke while using oxygen or around the tank when it’s not being used.
    • None of Aunt’ Nancy’s essential oils to cure headaches

    Optional Oxygen Equipment for Cluster Headaches

    There are additional pieces of equipment that can help you abort attacks easier or faster such as a demand valve (which was discussed briefly in the section on “what if oxygen doesn’t work for me?”), longer tubing, a bubbler, and portable oxygen.

    Demand Valve System

    A demand valve system uses a special valve with an additional fitting on a regulator to provide an uninterrupted flow of oxygen when needed—no need to wait for a reservoir bag to fill up. The oxygen flow shuts off when you are not actively breathing through the mask, optimizing the tank. A demand valve system can be expensive (around $350 or more), but many recommend it highly, particularly when a more “standard” oxygen setup is no longer working at full effectiveness. You will probably need a prescription to rent a demand system from some an oxygen supplier. Read about a clinical trial on CH and demand valves.

    Longer Tubing 

    Many people like to use longer tubing, so that they can pace while using high-flow oxygen. You can purchase longer tubing, or adapters to extend additional tubing. To find sources, enter the words “oxygen tubing” into a search. Here is one website that has a 50-foot tube.

    Humidifier (Bubbler)

    The oxygen in a tank is very dry, so much so that some people experience irritation in their nose, mouth, throat, or lungs when using it. A “bubbler” or humidifier passes the oxygen through water to add some moisture. Be careful, though, because not all humidifiers will work properly at the higher flow rates generally required to abort cluster headaches.

    Check with your oxygen supplier before attaching a bubbler. 

    According to one publication, “a good rule of thumb is to look for a 3 to 6 psi rating with a ‘pop-off’ pressure relief valve, and a diffuser that generates smaller bubbles.” If you fill your own bubbler, be sure to use sterile distilled water. Tap water contains impurities such as calcium and iron that will eventually coat the inside of your tubing and your mask and may promote bacterial growth, which must be avoided.

    Portable Oxygen System

    There are backpack assemblies you can use at home and take to work. Integrated backpack O2 delivery systems, like the unit shown below, provide nearly three hours continual use at a flow rate of 10 liters/minute. It is also configured with a “bubbler” humidifier illustrated in the photo on the left.

    A bubbler adds enough moisture to the normally-dry O2 to prevent dryness in the mouth and upper breathing passages. There are also smaller portable O2 kits with backpacks that clusterheads can use to gain even more mobility. The portable O2 kit shown below in Figure 3 comes equipped with three 1-liter bottles of compressed O2 charged to 3000 psi (200 BAR), a constant flow regulator, NRB mask, tubing, and the backpack. Depending on flow rate, each bottle holds 200 liters of O2 that can be used to abort from one to three CH attacks.

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    How to Speak to Your Doctor About High-Flow Oxygen and Cluster Headaches

    Oxygen can change your life, or even save it—you cannot let yourself be at the mercy of a doctor who doesn’t know that or doesn’t care.

     

    Many doctors are unaware of the effectiveness of oxygen for aborting CH attacks. Here are four suggestions in that regard:

    1. Get the studies about O2 to your doctor, preferably in advance of your appointment so he or she might have time to look them over. If you can’t do that, then print them out and bring them to your appointment.  Experience suggests that the doctor is not likely to actually read them, but you can try—and in any event, you have opened the door to discussing them. Here they are again:

    Rozen, T., and Fishman, S. “Inhaled Oxygen and Cluster Headache Sufferers in the United States: Use, Efficacy and Economics: Results From the United States Cluster Headache Survey” Headache (2010) at http://www.clusterheadaches.com/O2/Oxygen-survey-final.pdf

    Cohen, A., Burns, B., and Goadsby, P. “High-Flow Oxygen for Treatment of Cluster Headache.” Journal of the American Medical Association (2009). at http://jama.ama-assn.org/content/302/22/2451.full

      1. Read the articles yourself, make some notes, and be prepared to make your case. Don’t count on your doctor having read them.
      1. Consider having someone come with you to your appointment. We all have had those times when we really didn’t get satisfactory service from a physician and later regretted it. Especially if you’re already feeling crummy, someone with you as an advocate can help a lot. (And, if you’re worried about alienating your doctor, that other person can be assertive without you having to risk alienating the doc.)
      1. You may need to help them write the prescription. See the section on “how to get an oxygen prescription.”

      Your doctor has likely never seen an actual cluster headache attack and you may be one of their first patients with this condition. Ask them to learn more about cluster headaches and remind them that these are not “cluster migraines” or “sinus headaches,” both of which do not exist as diagnoses, but are actually one of the forms of Trigeminal Autonomic Cephalalgia that is a separate entity from migraines and tension-type headaches. You need fast-acting injectable or nasal medications to find relief and a comprehensive treatment plan. If they have not done so already, ask for a referral to a headache specialist or neurologist close by that has experience treating cluster headaches.

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      Oxygen Toxicity and Cluster Headaches

      Your doctor may refuse to prescribe you oxygen because he or she is concerned about “oxygen toxicity.” This is not a concern for cluster headache patients unless you have a pre-existing lung issue. Cluster headache patients are only on high flow oxygen for 15-20 minutes at a time. That is not long enough to harm your lungs and there is no evidence to suggest oxygen toxicity is a true concern for treating cluster headaches with high-flow 100% oxygen.

      What is a Hyperbaric Oxygen Chamber?

      Hyperbaric oxygen is administered in an enclosed chamber with a higher air pressure than normal. Hyperbaric oxygen chambers increase the amount of oxygen in your blood dramatically. In theory, it could work better than high-flow oxygen, but the treatment is impractical because you’d need access to a medical facility with one and would need to use it multiple times a day to abort each attack. Some people have attempted to create their own, but this is unsafe and unreliable.

      What If I Run Out of Oxygen?

      Some people with cluster headaches suggest that if your tanks become empty and you can’t get your supplier to fill them on time, or if you do not yet have any oxygen setup, you could try going to your local fire station, where there might be emergency medical technicians (EMTs) who are trained in giving oxygen. The “oxygen page” at clusterheadaches.com says, “They are often willing to help you more than if you went to the Emergency Room and had to deal with staff that may be ignorant of oxygen therapy for cluster headache.”8 The Emergency Room is another option, though.

      Alternate Sources to Get High-Flow Oxygen

      A study reported that about 12 percent of people with CH who use oxygen to treat their attacks use “non-medical welding grade oxygen,” adding that such oxygen “could be harmful to the user depending on the gas or gases the cylinder was previously filled with and trace gases still present in the cylinder.”9 People who use welding oxygen do so for a variety of reasons—doctors who won’t prescribe O2, for example, or insurance issues.

      Please understand that we DO NOT recommend using anything other than prescribed medical oxygen provided by an approved vendor.  Yes, that is the disclaimer.

      Those who use welding oxygen acquire their other equipment—regulator, mask, etc.—from sources described in this page. Most outlets that sell or rent cylinders for welding oxygen also sell regulators. The regulator will not have a liters-per-minute reading, but it can be adjusted just by opening the valve so the reservoir bag on the mask fills readily.

      Medical oxygen obtained by a doctor’s prescription is strongly preferred as the way to abort cluster headaches. When that way is not feasible, welding oxygen might be a valuable alternative should you chose to disregard the disclaimer above.

      You can read many discussions about welding oxygen at www.clusterheadaches.com and our forum boards by going to the discussion boards at those sites and typing the word welding into the search bar on the top left side of the page.

      SCUBA tanks are not appropriate under any circumstances for treating cluster headaches: they contain compressed air, not pure O2.

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      Traveling with Oxygen for Cluster Headaches

      If you need oxygen while flying on an airplane, we have a separate file you can print and take with you that can be accessed using the linked text. Airlines typically reserve oxygen for serious emergencies such as heart attacks or stroke, but there are workarounds to get oxygen from the flight attendant. It’s less convenient, but if you travel by train, you can bring your oxygen tanks with you.

      Some suppliers will work with you to have oxygen available in places you are traveling to. See, for example, the “Oxytravel” service at Linde Healthcare.

      Recap: What You Actually Need

      To say the least, this web page is overwhelming. We hope the linked text to the bulleted sections was helpful, but here is the gist of what you need to know:

      • The oxygen prescription must be written for oxygen therapy for cluster headache as needed at 12-15lpm with a non-rebreather mask.
      • You may have difficulty filling your prescription with an oxygen supplier due to the higher flow, but they will give you the tanks and you can buy your own regulator on Amazon or eBay that goes up to 25lpm to abort attacks faster.
      • You need both small and large tanks. The smaller “E” tanks are great for traveling in your car. The bigger “M” or “J” tanks can sit by your bed or couch for home use. “E” tanks may only treat two or three attacks before running empty, but large tanks will last much longer.
      • You need a non-rebreather mask, but the oxygen supplier will most likely give you a mask with holes on the sides. You will need to cover those in order for it to work, or purchase the O2ptimask created specifically for cluster headaches.
      • A specific breathing technique is necessary to abort an attack effectively. The first option is the hyperventilation method that involves rapid breathing with a fast exhale that induces hypoxia. The second is breathing in with the mask through your nose and out through your mouth. After 15 minutes, you should have moderate to significant relief. If oxygen hasn’t worked for you in the past, try a higher flow rate and doublecheck that you’ve met the other criteria for using high-flow oxygen for cluster headaches correctly.

      More Resources and Information on High-Flow Oxygen for Cluster Headaches

      Some of the resources used to compile this comprehensive page are listed in the end notes, but much of this information is included in the PDF download below along with more information on traveling with oxygen, dealing with your doctor, and sources to learn more about cluster headaches.

      Clusterbusters is dedicated to helping cluster headache patients around the world. If you or a loved one are struggling with cluster headaches and/or have recently been diagnosed, there are a variety of ways we can help including our private message board where you can ask any and all questions.

      ENDNOTES

      [The links in these endnotes were working when the document was created. We apologize for any that have subsequently become broken.]

      Also, we wish to thank Clusterheadaches.com and DJ for his kind permission to use many of the pictures and some of the content from his web site in the preparation of this article. For additional information, please see those pages at: http://www.clusterheadaches.com/O2/index.html

    in High-Flow OxygenOxygen Library