Does Oxygen work for Cluster Headaches? 2023
Does Oxygen work for Cluster Headache?
Cluster headache (CH) is called “suicide headache” for good reason because it is the most severe headache known to man. CH occurs in 0.3% of the population. Affected victims have described it as: “Like a nail, like a needle, like a hook, like a rod in my eye.”
This is an article by Britt Talley Daniel MD, member of the American Academy of Neurology, migraine textbook author, podcaster, YouTube video producer, and blogger.
For persons who do not want to take pill or use a medical device is there any other treatment for terrible Cluster Headaches?
The agony of a Cluster attack
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As a general rule high flow oxygen through a rebreather mask is safe, quick, highly effective treatment for Cluster Headache. Oxygen treatment is economical and has no risk of developing medication overuse headache, important side effects, or long term iatrogenic medical problems. Oxygen therapy works quickly, usually in 5-15 minutes.
Medical treatment for Cluster headache needs to be very fast because the headaches come on very quickly, faster than a typical Migraine would be, and oral triptan drugs take 30 minutes to work and a typical Cluster attack may be over by then.
Two of the triptan class of drugs are recommended--subcutaneous sumatriptan and nasal spray zomatriptan both of which work in 10 minutes, but there is a need for another acute therapy option for Cluster headaches. Subcutaneous 6 mg sumatriptan alone which works in 10 minutes is the best drug for acute therapy of Cluster headache but all triptans should be limited to 2 injections per day and 2 doses a week and triptans taken over 10 days a month can lead to medication overuse headache.
Cluster headache attacks come 1-8 times a day for 6-12 weeks in episodic patients and every day in chronic cluster. Sumatriptan is not approved by the FDA to treat Cluster headache. One can easily see how another option of treatment is needed.
Side effects
Oxygen therapy is safe and has no important side effects.
Speed of onset of Cluster headache vs. Migraine
Cluster headaches come without warning and reach a peak in 2-15 minutes. A typical Migraine without aura attack may take half an hour to several hours from onset to peak. This rapid onset of a Cluster headache attack demands rapid treatment to be successful.
Safety
Oxygen treatment has no risk of cardiovascular symptoms, like all the triptans do. Cluster headache patients also typically have a high use of smoking cigarettes which adds atherosclerotic cardiovascular disease risk to the mix.
Flow rate
Effective use of oxygen for cluster is given at a speed, called a flow rate, between 6 and 15 liters per minute, much higher than typical oxygen given to patients for pulmonary or cardiac disorders.
Use of a nasal cannula which inserts in the nostrils via a nasal cannula doesn’t supply enough oxygen to work. That is the reason why a non-breather mask which lets oxygen in but doesn’t allow the accumulation of CO2 needs to be used.
The prescription the doctor writes should be for:
A non-breather mask, a regulator to determine the amount if oxygen flow, and an oxygen tank, with a wheeled cart for transportation.
The tank may be refilled every month, or as needed. The masks and regulators may be added to the refill price or bought separately.
Related questions.
How does Oxygen work for treating Cluster headache?
The pathophysiology of how oxygen treats Cluster headache is not clear. Treatment may relate to the fact that oxygen can cause decrease in arterial flow to the brain and cerebrovascular arterial constriction.
What is the success of Oxygen treatment?
Oxygen is a safe, economical treatment for persons with Cluster headache and is free from problems with medication overuse, serious side effects, or long-term harm.
What are the problems in using Oxygen?
Doctors don’t write the prescription for Oxygen treatment properly.
Often times doctors write O2 to be delivered via a regular, not a non-breather mask or a nasal cannula. These modes of O2 delivery don’t give high enough levels to work for Cluster headache.
Insurance coverage is poor as only about 65% of insurance cover Oxygen for treatment of Cluster headache and Medicare and Medicaid do no provide any coverage.
Some persons buy impure, non-medical grade oxygen which is much cheaper but has impurities in it. This should not be used.
What treatments for Cluster headache have been endorsed by authorities?
The answer to this question resides in the article “Treatment of Cluster Headache: The American Headache Society Evidence-Based Guidelines” written by Matthew S Robbins, et al in the journal Headache Volume56, Issue7, July/August 2016, Pages 1093-1106.
Abstract
Background: Cluster headache (CH), the most common trigeminal autonomic cephalalgia, is an extremely debilitating primary headache disorder that is often not optimally treated. New evidence-based treatment guidelines for CH will assist clinicians with identifying and choosing among current treatment options.
Objectives: In this systematic review we appraise the available evidence for the acute and prophylactic treatment of CH, and provide an update of the 2010 American Academy of Neurology (AAN) endorsed systematic review.
Methods: Medline, PubMed, and EMBASE databases were searched for double-blind, randomized controlled trials that investigated treatments of CH in adults. Exclusion and inclusion criteria were identical to those utilized in the 2010 AAN systematic review.
Results and recommendations: For acute treatment, sumatriptan subcutaneous, zolmitriptan nasal spray, and high flow oxygen remain the treatments with a Level A recommendation. Since the 2010 review, a study of sphenopalatine ganglion stimulation was added to the current guideline and has been administered a Level B recommendation for acute treatment.
For prophylactic therapy, previously there were no treatments that were administered a Level A recommendation. For the current guidelines, suboccipital steroid injections have emerged as the only treatment to receive a Level A recommendation with the addition of a second Class I study.
Other newly evaluated treatments since the 2010 guidelines have been given a Level B recommendation (negative study: deep brain stimulation), a Level C recommendation (positive study: warfarin; negative studies: cimetidine/chlorpheniramine, candesartan), or a Level U recommendation (frovatriptan).
The FDA has not recommended that triptans be used for Cluster headaches, and without FDA indication, triptans are covered by only 65% of private insurances, and not by Medicare or Medicaid.
Have clinical trials for Oxygen treatment of CH been done?
Cohen AS, et al wrote on High Flow Oxygen for treatment of Cluster Headache – A Randomized Trial, JAMA December 9, 2009; Vol. 301, Nr 22.
These researchers looked at 57 patients with episodic cluster headache and 19 with chronic cluster headache for their analysis. They concluded that Cluster headache patients who inhaled high-flow oxygen therapy at the onset of symptoms were more likely to be pain-free after 15 minutes than patients who took a placebo.
Petersen AJ, et al, wrote in Cephalalgia 2014 Nov;34(13):1079-87 on “Oxygen treatment of cluster headache: a review.
Abstract
Purpose: Our aim was to review the existing literature to document oxygen's therapeutic effect on cluster headache.
Method: A PubMed search resulted in 28 hits, and from these and their references we found in total 11 relevant studies. We included six studies that investigated the efficacy of oxygen treatment. One study is observational and the remaining five are RCTs. Another five studies were on hyperbaric oxygen treatment hereof two case studies.
Conclusion: Oxygen therapy can be administered at different flow rates. Three studies investigate the effect of low-flow oxygen, 6-7 l/min, and found a positive response in 56%, 75% and 82%, respectively, of the patients. One study investigates high-flow oxygen, 12 l/min, and found efficacy in 78% of attacks. The effect of hyperbaric oxygen therapy has been investigated in a few small studies and there is evidence only for an acute, but not a prophylactic effect.
Despite the fact that only a few high-quality RCT studies are available, oxygen treatment is close to an ideal treatment because it is effective and safe. However, sufferers of cluster headache do not always have access to oxygen because of logistic and financial concerns.
Are there any useful websites for Cluster headache?
Clusterbusters.org has news, drug trials, research articles, and patient resources on Cluster headache which would be helpful to an affected patient or his family.
https://ashleyhattle.com/about-cluster-headaches-and-book-author/ is an incredibly detailed website for what she calls the involved “clusterheads” and I include a good sampling from her blog next because it seems so helpful. She also has written a book on Cluster entitled: “Cluster Headaches: A Guide to Surviving One of the Most Painful Conditions Known to Man.”
How to Get and Use Oxygen to Treat Your Cluster Headaches by Ashley Battle
You know you have cluster headaches. It may have taken months or years, but you finally have an official diagnosis. Hopefully, your neurologist or headache specialist already wrote you a prescription for oxygen, but even so, they likely failed to mention it’s not as simple as breathing in air.
You need a special mask, a high liter flow, at least one big tank, and several small tanks. One of the best resources for correct oxygen use to abort cluster headaches is found at Clusterbusters.org, but an extensive study by Dr. Todd Rozen published in Headache 2010 is an eye-opening resource for how difficult it is for patients to get a prescription, find the right supplies, and use it correctly.
There are five aspects to keep in mind as your doctor writes the prescription and you take it to an oxygen supply store including:
1. The Oxygen Prescription
Whether it’s your neurologist or primary physician writing the prescription, they will likely get it wrong, which will give you yet another hurdle to jump over. Or worse, they may refuse to write the script altogether. Here’s what you can do:
Direct them to well-respected resources of information. A 2009 study by Drs. Goadsby, Cohen, and Burns found that 78% of patients using inhaled high-flow oxygen were able to abort 71%-85% out of 150 attacks. In comparison, just 20% of patients using room air responded, and even then, it worked for only 14%-26% of attacks.
The study concluded that there’s a significant difference between high-flow and room air when it comes to treating cluster headaches with oxygen. That’s only one study of dozens. The troubling thing is that Medicaid and Medicare still don’t think there’s enough evidence, which is another reason why we go to Headache on the Hill each year.
Encourage your physician to dig deeper and learn more about this mystery condition nicknamed “Suicide Headaches.” There’s a reason why oxygen works, but we haven’t found it yet, nor do we know what causes cluster headaches.
But, we do know that it has to be 100% oxygen at the very least 12lpm. Some patients have found relief with up to 40lpm. However, your physician will probably worry about “oxygen toxicity,” but unless you have a pre-existing lung disease or issue, you will be fine using it for 15-20 minutes at a time.
Come prepared to explain what the prescription needs to say in order to get the right tank set up. This means your oxygen script should say you need at least 12-15 liters per minute (lpm) “as needed for cluster headaches.” That phrasing will help you overcome some of the trouble you’ll undoubtedly face at the oxygen supply company and your insurance.
Find a new doctor. If you’ve tried and tried to make your physician see the facts, it’s time to move onto a neurologist or headache specialist who knows how to treat cluster headaches.
2. The Flow Rate
The flow rate for your oxygen regulator is another part of the process where you will most likely face opposition. To avoid this, I suggest buying your own regulators (which can go up to 25lpm or higher) on Amazon.
When you go through the oxygen company, you pay a rental fee for the regulators, and you will have to fight tooth and nail for them to give it to you. The two main regulators you will need are for the E Tank, which is about 2-feet tall and often seen being wheeled around, and the M Tank, which is about 3.5 feet tall and sometimes called a J tank. Some cluster headache patients use a demand valve that ensures a consistent flow or a bubbler system to help with the dry mouth.
3. The Oxygen Supply Company
This is where the metaphorical headache really sets in. Depending on where you live, you will either have one choice or several. You can ask your neurologist for a recommendation or go to www.homeoxygencompanies.com to find the company nearest you. As you weigh your options, compare the prices. Some require a monthly payment; others make you pay per tank—Remember that your insurance company will most likely not cover the cost.
Once you’ve picked the company, you’ll have to scan/fax a copy of your prescription or bring it in person. Then, you can set up automatic deliveries or pick them up yourself each time. Keep in mind that you can go through several tanks a week, depending on the number of attacks, chosen liter flow, and size of the tanks.
4. The Mask
Cluster headache mask | clusterheadaches.com
Now that you have your regulator and tanks, you need to have the right mask. The oxygen company probably gave you a nasal cannula (the one with prongs that wraps around your ears and sits inside your nostrils), which won’t work.
You need a nonrebreather mask, which means the mask they may have given you won’t work either because it has holes on either side of the nose. You can either tape over those holes, or buy the mask that’s specifically designed for cluster headache patients, the ClusterO2Kit™.
5. The Tank
I mentioned E tanks above. They’re the oxygen tanks you see people wheeling around with them to the grocery store. If you’re using 15lpm, an E tank will only last you 35 minutes, which is probably enough for two attacks. These tanks should be saved for when you’re away from home. You can keep one at work, in your car, etc.
Oxygen tank sizes in U.S. | clusterheadaches.com
The M tanks are the ones you really want. They’re hefty and last much longer. All in all, you should have several E tanks on hand for emergency situations, and two or more M tanks at home so you don’t run out during a bad bout of attacks such as an episodic cycle or “high cycle” for chronics. You can choose to get smaller tanks that fit in a backpack, but they will only last for one attack if that.
If the oxygen company delivers the tanks to you, make sure they show you how to set it up. You’ll need a special wrench for the M tank regulator and a separate one for the E tank.
Now you have everything you need and can start aborting attacks with high-flow oxygen. This abortive treatment has little to no adverse side effects, can be used any number of times a day, and works for approximately 80%-90% of patients.
Some research suggests that you can prolong the length of time between attacks by switching to the nasal cannula for 20 minutes after aborting the attack. In which case, you can lower it to 5lpm, use the prongs, and breath normally again. You can also do this for 20 minutes before bed to possibly prevent a nighttime cluster headache.
The information in this blog is the tip of the iceberg when it comes to cluster headaches and oxygen therapy. There’s so much more to know, and if your doctor refuses to learn with you, I highly recommend finding another one.
The road to diagnosis is just the first battle, and unfortunately, there’s a lot of misinformation online about cluster headache treatment. Please, scroll past any article that says “natural remedies” or “cure” for cluster headaches. The best information out there can be found on Clusterbusters.org and clusterheadaches.com, but there are also fantastic Facebook groups (“Cluster Headaches”) with seasoned clusterheads who can answer your questions based on experience.
Learn more about cluster headaches and treatment options in Ashley’s book Cluster Headaches: A Guide to Surviving One of the Most Painful Conditions Known to Man, which can be found on Amazon and www.ashleyhattle.com.
A brief history of oxygen treatment for cluster headache by Ashley Battle
According to the National Headache Foundation, oxygen treatment for headaches was first studied in 1939 when Mr. Charles Rhein of Linde Air Products reported to Dr. Francisco Alvarez at the Mayo Clinic that he had successfully treated severe headache patients with pure oxygen. In 1940 Dr. Alvarez released his own study of 100 patients with “migrainous” headaches who were treated with 100 percent oxygen through a nasal type mask and a flow of six to eight liters per minute, in which 80 percent of those were reported to be completely or significantly relieved. However, in the thirties and forties studies were much less rigorous, and there was nothing to distinguish migraine from cluster headaches. Recent work has been done almost exclusively on the effect of oxygen inhalation on cluster headaches, most significantly with Dr. Lee Kudrow, who found that 75 percent of the cluster headache patients he studied had their pain relieved by inhalation of oxygen, with increased success the earlier in the attack it is used.
How is Cluster headache classified? Is it related to Migraine?
When the first American classification of headache was released in the JAMA in 1962 it listed Migraine as the main classification of headache and underneath the name Migraine were different types of Migraine headache such as common Migraine, classical Migraine, hemiplegic Migraine, Opthalmoplegic Migraine, and at the bottom--Cluster headache.
That is, Cluster headache was originally listed as a type of migraine, but that was long ago and now the International Classification of Headache Disorder, first published in 1988, and now called ICHD III, classifies Cluster headache separately from migraine and terms it a Trigeminal Autonomic Cephalgia.
Here is the current International Classification of Headache Disorders (ICHD) v3 definition of Cluster headache:
A. At least 5 attacks fulfilling B-D below.
B. Severe unilateral orbital, supraorbital, and/or temporal pain lasting 15 to 180 min.
C. Attack is associated with at least one of the following signs on the side of pain:
1. Conjunctival injection-eye redness
2. Lacrimation-tearing
3. Nasal congestion-stopped up nose
4. Rhinorrhea-nasal dripping
5. Forehead and facial sweating
6. Miosis-small pupil
7. Ptosis-upper eyelid drooping
8. Eyelid edema-eyelid swelling
D. Frequency: from one every other day to eight per day
Clinical features
During the cluster headache in addition to pain the patient may experience symptoms on one side of the face around the eye, upper cheek, or temple.
The headaches come episodically, usually only once a year lasting about 6 weeks and chronically in 10% occurring daily.
The headaches last 15 to 180 minutes and unlike Migraine where the patients have to lie down because they feel worse being up, patients during Cluster attacks have to get up and move around.
Cluster headaches occur 1-8 times a day, usually coming at night and locking into the clock to occur at the same time every day.
Why do persons with Cluster headache get up and move around?
Migraine headaches put the patient flat on their back in bed with ice on their head, and all the lights of and no sound. Cluster Headache sufferers are different and they have to move around. Part of the reason must have to do with the very intense nature of pain with Cluster headache.
CH is the most severe of the primary headache disorders, with attacks occurring up to eight times per day lasting between 15 minutes to 3 hours.
The attacks are accompanied by restlessness, anxiety, and agitation, and unlike migraine, the pain is so intense that the individual does not want to lie down and can’t remain still.
Writing in The Lancet in 1193 on “Behavior during a cluster headache” Blau stated:
“Walking with the trunk slightly bent forwards and clutching the head, or sitting and rocking backwards and forwards with the hands pressed on or near the painful site, was the most common behavior during attacks.”
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All the best.
Britt Talley Daniel MD