What to Do When Your Doctor Won’t Prescribe You Oxygen for Cluster Headaches
Last updated: August 2021
Oxygen therapy is the first line of treatment for cluster headaches. This neurological condition causes sudden bouts of extreme pain that even the most potent narcotic won’t touch. High-flow oxygen is a godsend for most patients and is recommended by every headache organization worldwide. Many doctors fail or refuse to prescribe oxygen, which puts the burden on you to compile the research and convince them it’s necessary to treat attacks.
Here are a few tips if your treating physician refuses to prescribe you oxygen therapy for cluster headaches.
Print out information to bring with you
Many studies prove high-flow oxygen is an effective abortive treatment for cluster headaches. Find and print the treatment guidelines and research on oxygen to share with your provider at the next office visit. Consider bringing a trusted friend or family member with you to ensure you’re heard.
You can also send this information to your physician’s office through your online patient portal. They may not read it, but this shows you’re committed to receiving the proper treatment for your condition. Make sure you read them too and take notes. That way, you can make your case with facts when you’re face-to-face.
Some of the most noteworthy resources to read and bring to your next appointment with your provider include:
- The 2016 Treatment Guidelines by the American Headache Society (AHS): Recommends oxygen therapy as “Level A” treatment for cluster headaches.
- “How To” Guide for Providers Prescribing Oxygen from Dr. Tepper: Outlines the process doctors can take to help their cluster headache patients fill their oxygen prescription correctly.
- Study: Inhaled Oxygen and Cluster Headache Sufferers in the United States: Use, Efficacy, and Economics: Results from the United States Cluster Headache Survey in Headache 2010
- Study: High-Flow Oxygen for Treatment of Cluster Headache in the Journal of the American Medical Association 2009
Know the correct oxygen therapy set up
Keep in mind that your doctor may not know how to prescribe oxygen for cluster headaches. The prescription is tricky, and filling it is even more complicated. The script must state you need 100% oxygen at 12-15 liters per minute (LPM) through a nonrebreather mask as needed for cluster headaches.
If your provider is not specific enough, the oxygen supplier will try to give you a concentrator that processes room air. An oxygen concentrator maxes out at 5 LPM with a nasal cannula (those pronged tubes that go in your nose). A specific breathing method to abort cluster headache attacks with oxygen involves short, quick breaths and a complete exhale repeated for up to 15 minutes. Your oxygen setup is crucial in effectively treating attacks.
Ask the cluster headache community
Nearly every patient has faced issues getting oxygen prescribed, filling the script, getting insurance to cover the cost, and/or using the correct setup and breathing method. Many people think oxygen doesn’t work for them when the problem is the flow rate or mask. You can find online communities for cluster headaches through Migraine.com, Clusterbusters, and Facebook groups.
You are not alone in your struggle to get oxygen for your cluster headaches. Some patients resort to purchasing welding oxygen from a local welding company, which can be dangerous and is not advised.
Find a new doctor
Transferring to a new doctor is a last resort but a valid option. If you bring research to your physician that shows high-flow oxygen works for cluster headaches and they are still unwilling to prescribe oxygen therapy, it is time to search for a new doctor. A headache specialist or neurologist is your best bet for proper treatment.
The non-profit organization Clusterbusters has a wealth of knowledge about oxygen therapy. You can learn more about the ins and outs of getting and using high-flow oxygen for cluster headaches on their treatment pages.
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