5 Things You Need to Know to Abort Cluster Headaches with Oxygen
High-flow oxygen may be the most effective treatment for cluster headache attacks, but it is not as simple as breathing through the nasal cannula you often see on movies and passersby.
Barriers to accessing oxygen for cluster headache
Cluster headaches come on quickly, and it's important to have an abortive that is fast-acting but also doesn't come with severe side effects like many of the pharmaceutical medications prescribed for the condition. Oxygen therapy is considered first-line treatment, but patients face at least five barriers in gaining access to oxygen and using it correctly.
An oxygen prescription for cluster headaches
The first issue a patient faces after diagnosis is often getting their doctor to prescribe oxygen therapy for cluster headaches, or to write the prescription correctly.
Having the right doctor to write the prescription
There are just 1.2 certified headache specialists per 100,000 patients in the United States according to the Association for Headache Disorders Advocacy, so many cluster patients seek help from their primary care physician (PCP). While neurologists and headache specialists typically prescribe oxygen right away, it can take several appointments and months, even years, for a patient to convince their PCP that they need oxygen. In the meantime, we're often given medications used for migraine disease and otherwise not indicated for cluster headache including opioids that are ineffective and addictive.
Resources to help guide physicians towards an oxygen prescription
The Fix: Medical professionals respond reasonably well to patients who come to appointments prepared with resources about their condition and treatment. As cluster headaches are on the rarer side of primary headache disorders, providers don't like to admit they're not sure how to approach a treatment plan. Consider bringing these resources with you and ask a trusted friend or family member to come with you to make sure you're being heard in the clinic:
- Prescribing Oxygen for Cluster Headache: A Guide for the Provider by Dr. Stewart Tepper
- 2016 Treatment Guidelines for Cluster Headaches by the American Headache Society
- Comprehensive Oxygen Therapy Information by Clusterbusters
Requiring a high flow rate to abort cluster attacks
The next problem many of us face is getting our provider to write the oxygen script correctly. Research has shown that the best way to stop an attack is with 100% oxygen at a flow rate of at least 12-15 liters per minute (LPM) using a nonrebreather mask.1 The issue cited by medical professionals against this standard is often "oxygen toxicity" because of the high flow needed to abort attacks. However, this is not an issue for cluster patients as we're only on high flow for 15-20 minutes at a time.
The prescription should say the flow rate
It's crucial that the prescription state "Oxygen Therapy for Cluster Headache at 12-15 lpm through a nonrebreather mask as needed." The flow rate must be stated on the prescription because the oxygen supply company needs to give you a specific regulator for that (which in and of itself can be another barrier because oxygen suppliers may make you jump through additional hoops to be "sure" you need high flow). If the flow rate is not listed, then they will likely give you an oxygen concentrator which maxes out at 5 lpm and is not 100% oxygen because it filters room air.
Personally, this was my biggest issue when I was prescribed oxygen. I didn't understand why I wasn't getting pain relief with the concentrator until I learned through Clusterbusters that I did not have the right set up or mask.
Resources for proper oxygen flow rate
The Fix: The resources provided above include a 2017 article written by Dr. Stewart Tepper which provides step-by-step instructions to medical professionals on prescribing oxygen to cluster headache patients. Unfortunately, the 2016 AHS guidelines still state 6-12 lpm, but headache specialists and neurologists know the proper flow rate is up to 15 lpm. Bring this resource with you to your appointment or send it to your provider to review to ensure your script is written correctly and avoid an additional, metaphorical headache.
Another option is to purchase your own regulator and cut out the "middleman" through Amazon. The medline series works quite well, but you will need a regulator for a small E tank and a large M or J tank. Buying your own saves you money because the oxygen company will have you pay to rent their regulators.
The nonrebreather mask for cluster headaches
To inhale 100% oxygen, you need a nonrebreather mask, which isn't offered by most oxygen suppliers in the United States. The oxygen company may give you nasal cannulas, which are only useful if you're going to switch to a lower flow rate after aborting an attack to prolong the time between cluster headaches or before bed to avoid a nighttime visit from the cluster "beast." The delivery or pick up personnel will also give you a mask, but this mask is not a nonrebreather because it has holes near the nose.
Ensuring 100% oxygen for cluster headache attacks
The Fix: There is a mask created specifically for cluster headaches by cluster headache patients called the O2ptimask™, which is available at www.clusterheadaches.com as a Cluster 02 Kit. If you're unable to buy that mask, you can cover the holes of the mask the oxygen company gives you with tape to ensure you're getting 100% oxygen that's not diluted with room air.
The size and number of oxygen tanks is more than you think
You will go through the small E tanks you've probably seen folks wheeling around public spaces quickly at a flow rate of 12-15 lpm. That size will offer you less than an hour of oxygen but is great for travel. You'll need several of these as well as one or two large M or J tanks (the name varies per location and provider) that are approximately 3.5 feet tall. The oxygen company shouldn't give you too much grief about the number of tanks you need, but if you're paying out of pocket (which most patients have to) this can drive up the cost of home oxygen for cluster headaches.2 You may have a "per tank" fee.
Understand how long it takes to get through an oxygen tank
The Fix: There is no easy fix to this issue outside of understanding how quickly you will go through the oxygen in small tanks. It's recommended to place the larger tank next to your bed, so you have it within reach when an attack wakes you from sleep.
Breathing techniques to get maximum pain relief from cluster attacks
High-flow oxygen in treating cluster headaches requires one of two specific breathing techniques to abort attacks quickly. The first is a hyperventilation method in which you completely exhale the air from your lungs and take quick, short breaths in through the mask with the oxygen at 12-15 lpm. You then do a fast exhale and repeat this until the attack subsides or it's been 20 minutes. Alternatively, you can inhale through your nose and exhale completely through your mouth.
A treatment hack used by patients and recommended by some headache specialists is to then switch the regulator down to 5-6 lpm and use a nasal cannula to breath normally for 15-20 minutes after the attack is over. This can elongate the pain-free period between cluster headaches and if done before bed, can give you a few extra hours of precious sleep.
Home oxygen therapy is the first-line treatment for cluster headaches, but these barriers along with the CMS denial of coverage cause many patients to go through years of unnecessary pain and hassle to get the right oxygen set up and to abort their attacks.
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