High-flow Oxygen was proven to relieve cluster headache attacks within 15 minutes for nearly 80% of attacks with no serious side effects in a controlled clinical study (see the JAMA High-flow Oxygen Study). In fact, oxygen is considered to be the safest method of treating acute cluster headache attacks.
The approach is to use 100% pure oxygen at a flow rate of 12-15lpm, sometimes higher, through a non-rebreather mask for approximately 15 minutes or until the attack is stopped. Although that sounds pretty straightforward, learning how to use high-flow oxygen for quick relief takes some know how and practice. On this page, we describe how to get it, how to use it, and how to be safe with oxygen in the home.
Getting Oxygen for Home Use
For whatever reason, many doctors who are not very familiar with cluster headache treatment are reluctant to prescribe home oxygen. It is, in fact, much safer and much less expensive than other medicinal options and has proven efficacy. If your doctor is reluctant or dismissive of oxygen for your treatment and you have been diagnosed with cluster headaches, do not take "No" for an answer. Providing the doctor with a printout of the JAMA High-flow Oxygen Study (above) and respectfully pressing for a rationale regarding denying the appropriate treatment will usually suffice. As in all things with a rare disease like Cluster Headaches, it's important to build some rapport with the doctor and assume that they are working in your best interest, but may not be very familiar with this disease. If you find too much resistance, consider going to another doctor, preferably a headache specialist neurologist. If the doctor is reluctant to prescribe O2, he or she will probably be reluctant to provide you with adequate preventative medication as well.
If you are not currently under medical care, it is feasible to get oxygen directly from a reputable oxygen supplier. Welding oxygen is also pure and typically comes from the same source as medical oxygen. The key difference between medical and non-medical oxygen relates more to the chain of custody of the oxygen tank (cylinder) and requirements regarding purging the tank prior to filling. You can always ask your oxygen supplier to purge your tanks before filling.
If you do create your own setup, you will need to purchase a regulator appropriate for the tank you are using. Different tank types use different regulators due to tank pressures. 0-25lpm regulators for E tanks are readily available online. In addition to this, you will need to purchase a mask and oxygen hose (clear tubing). We strongly recommend the O2PTIMASK kit, available on this site or directly from Linde Healthcare.
Oxygen tanks come in various sizes. Depending on your flow rate (how much you use), you will likely need more than one tank. It's a good idea to have a second tank available for when you run out. A larger stationary tank (M size tank) is common from in-home oxygen suppliers but they can be unwieldy. E size tanks are smaller and easily moved around for use around the home or in the workplace. At 15lpm, an E tank will usually last only 4-6 attacks, so it's a good idea to have several. Changing over the regulator to a fresh tank is very simple and only takes a couple of minutes. Many people opt for having a large stationary tank with a long hose to enable movement around the house and several E tanks for extended mobility. Remember to ALWAYS turn off your oxygen at the tank valve after each use, not with the regulator.
You may also hear about a "demand valve." A demand valve is exactly as the name implies: it provides as much oxygen as you can consume when you inhale. This is the optimal setup for any cluster sufferer as it supplies a constant stream of high volume O2 and closes automatically when there is no draw on the hose. However demand valves are costly, in the range of $250 and up. If you have an opportunity to get a demand valve, it is highly recommended.
Checking your oxygen setup
Once you have all of your components, your home supplier will usually set it up for you. However, it's important to know how to do this yourself since you will undoubtedly need to change tanks at some point. Doing so in the heat of an attack can be somewhat challenging if you have no experience with it.
Setting up your tank properly is important to avoid any errant spillage of oxygen. Oxygen is not in itself flammable but can increase the flammability of anything near it. Oxygen can saturate bedding or clothing, increasing the likelihood of a rapid fire if exposed to flame or spark. The simple solution is checking your setup before opening the valve to make sure all hose connections are tight and that your regulator is firmly attached to the cylinder. Then open the tank valve slowly and set the regulator at a low flow setting, ie. 5lpm. Listen and feel for any leaks around the regulator and hose connections. If you hear oxygen leaking anywhere but at the mask itself, close the tank valve and correct it.
When using oxygen, take extra care not to allow the oxygen to flow freely for any extended period. Always turn oxygen off at the tank valve, not with the regulator. By all means, DO NOT SMOKE or get near any open flame while using oxygen. Try to maintain at least a 20 foot distance between the oxygen and anyone smoking. Please read our OXYGEN SAFETY page.
If you do happen to spill some oxygen due to a faulty regulator setup or other problem, make sure the area gets plenty of fresh air via an open window or door. Fluff out any bed linens, pillows, or clothing.
Aborting a cluster attack
Aborting a cluster attack with high-flow oxygen is not entirely intuitive and it takes some practice to get good at it. By all means, if it is your first time using your home oxygen setup, give it a trial run BEFORE you are having an attack. The oxygen won't hurt you. Success versus failure in aborting an attack usually boils down to a few simple things to keep in mind:
- The Earlier the Better - It is important to get on the oxygen at the first sign of an attack. In some cases, it is possible to head it off completely. If you wait too long, it is not likely you will successfully abort the attack.
- Pay Close Attention to the Reserve Bag - Wait a few seconds for the reserve bag to fill completely before inhaling the oxygen. The reserve bag should be your gauge for determining if you are getting enough oxygen. If the flow rate is set too low or if the tank is running low, your reserve bad may not completely refill between breaths. The optimal situation is that you never completely flatten your reserve bag and that it is nearly fully inflated before inhaling. If your reserve bag remains inflated while inhaling, you may not be inhaling deeply enough.
- Take Long Deep Breaths - The idea is to consume as much pure oxygen as you can. Deep breaths allow the oxygen to fully transfer in the lungs. Rapid, short-succession breathing may make you dizzy and will not accomplish the goal of aborting the attack. Breath deep repeatedly, near the point of hyperventilation, for best results.
- Stay on the Oxygen - Remain on the oxygen for at least 3-5 minutes past relief of the attack. Occasionally an attack can reoccur after stopping the oxygen. Get right back on the oxygen, deep breaths until the attack has ceased.
- Additional mechanical/setup considerations:
- Adapt your oxygen flow rate based on your reserve bag. If it goes flat during use, increase your oxygen flow. If you are maxed out on you regulator's flow rate, consider getting a higher flow regulator or a demand valve. If your reserve bag is never close to empty, you may be wasting oxygen. Your ability to consume oxygen will vary at different times, so always use your reserve bag as your guide.
- Keep the oxygen mask tight against the face while inhaling. The concept is to inhale pure oxygen. Any leaks on the mask edge will allow in room air which will dilute the oxygen ratio. It is not important to keep the mask tight during exhalation, but be cautious not to spill oxygen unnecessarily.
- A cannula or nose apparatus will not work to abort a cluster headache attack for the reasons mentioned above.
- If at first you don't succeed, try, try again. It is worth getting this right.
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Information from this site or elsewhere on the Internet is not a replacement for medical guidance from a qualified medical professional and should be discussed with your doctor.