Are Cluster Headaches as Rare as They Say?

If you’ve been diagnosed with chronic or episodic cluster headaches, you’ve undoubtedly heard that it’s a “rare” condition. But, is it? Approximately one in a thousand have cluster headaches, and that number could be higher considering the rate of misdiagnosis in the patient community. A disease is typically considered rare when it affects less than one in 2,000 people in Europe or fewer than 200,000 in the United States. The estimated U.S. population is nearly 326.6 million people according to the US Census Bureau, which means about 326,500 Americans live with cluster headaches. Not such a rare disease, eh?

While cluster headaches affect more than 200,000 people, they can still qualify for The Orphan Drug Designation program because drug and device manufacturers are less likely to recover the cost of developing a treatment. However, the qualifying criteria are so vague and complicated that very few drugs have been included in the FDA program and discounts that come with it. Additionally, Cluster Headache is listed as a rare condition by NORD (National Organization for Rare Disorders), but not uncommon enough to warrant NIH funding under the Rare Disease Clinical Research Network.

The Problem with the Word “Rare”

When we call this brain disorder “rare,” we minimize the impact it has on patients, their loved ones, and their quality of life. We also minimize the financial strains it places on everyone involved—Drug and treatment manufacturers, insurance providers, and out-of-pocket patient expenses. Patients often spend thousands of their hard-earned income on high-flow oxygen therapy alone because Medicare/Medicaid (and therefore private insurance companies) refuses to cover the cost. If this disease is so rare, why is the number one treatment banned from coverage? The actual cost is minimal when compared to sumatriptan injections and other abortive or preventative medications.

There are several conditions that you’ve probably heard of and don’t consider rare, but in actuality, these disorders affect the same (.1%) or fewer percentage of Americans as cluster headaches:

  • Multiple Sclerosis (.1-.2%)
  • Autism Spectrum Disorder (.146%)
  • Down Syndrome (.1% or less than)
  • Narcolepsy (.074%)
  • Sudden Infant Death Syndrome or SIDS (.05%)

Some well-known diseases affect a smaller percentage of the population such as cystic fibrosis, which impacts around 30,000 Americans and ALS (Lou Gehrig’s Disease), which impacts just 6,000 Americans.

There are more than 7,000 conditions on the Rare Disease List, most of which are genetic, but the prevalence of each disease varies. According to Global Genes®, 80 percent of those with a rare disease are affected by just 350 of the 7,000 conditions on the list.

How Many People have Rare Diseases?

Approximately 30 million or 10 percent of the U.S. population has some form of a rare disease. Maybe they have cluster headaches or MS, or maybe they have Vampire Syndrome (Xeroderma Pigmentosum), which affects one in a million in the United States and one in 22,000 in Japan.

Cluster headaches are less common than migraine and tension-type headache. They’re less common than most forms of head pain. Technically, these bouts of extreme, ice pick-type pain are rare, but they’re one of the most common of the rare diseases.

Learn more about rare disease statistics.

Pain-free wishes!

Ashley S. Hattle

Author of Cluster Headaches: A Guide to Surviving One of the Most Painful Conditions Known to Man

Member of the Board of Directors at Clusterbusters—Nonprofit organization for cluster headaches

Medical content and fiction writer

P.S. There are organizations such as Rare Patient Voice that specialize in raising awareness for less common conditions and connect patients with current research and surveys regarding their disease. I encourage anyone with cluster headaches to check out their website. If you sign up and list Clusterbusters as your referral, they’ll donate $5 to the organization.

Cluster Headache Patient & Advocate Discusses Disease on Podcast

Cluster headaches are considered one of the most painful conditions known to man. Podcast Host, Jeff “Leffy” Gaston, and Author Ashley S. Hattle discuss the attacks, episodic versus chronic forms, and cluster headache treatments in the video below.

Hattle is the author of Cluster Headaches: A Guide to Surviving One of the Most Painful Conditions Known to Man. The book can be purchased at or on Amazon. Learn more about cluster headaches at and

How to Get & Use Oxygen to Treat Your Cluster Headaches

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, 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 to find the company nearest you. I recommend avoiding Apria Healthcare for oxygen. They’re notoriously horrible to cluster headache patients, and you will not find compassion from their employees. 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 |

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. |


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.

6.     The Right Breathing Technique

Your breathing technique is the most important aspect of using oxygen to abort a cluster headache attack. It’s not as simple as breathing. There are two techniques, and the first seems to be the most widely used.

  1. Aborting Cluster Attack with Hyperventilation Technique: Begin by exhaling completely to the point where you hear yourself wheeze. Take quick, short breaths in until your lungs are full and do a complete exhale again. Repeat this until the attack has passed, but no longer than 15 minutes at a time. If the attack persists, take a ten-minute break and try it again. You should have around 24-30 breath cycles each minute using this option, and you’re supposed to feel lightheaded once it’s done.
  2. Aborting Cluster Attack with Nasal Inhalation: Personally, I’ve never used this technique, but it involves breathing in through your nose (but still using the nonrebreather mask) and out through the mouth with a complete inhale and exhale.

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 and, 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 my book Cluster Headaches: A Guide to Surviving One of the Most Painful Conditions Known to Man, which can be found on Amazon and

Pain-free wishes!

Ashley S. Hattle

Author, Writer, Episodic Cluster Headache Patient

Update: The demand valve is considered by some to be the best oxygen delivery method because it delivers the oxygen at the flow rate you choose without wasting precious oxygen. You don’t need a bag for this method because the valve shuts off when you exhale. Also, an E tank lasts 3-4 attacks, which is why several on hand is recommended. — Thank you, David Nickerson.


CYBER MONDAY: $5 Off Your Guide to Surviving Cluster Headaches


I hope you had a wonderful Thanksgiving in a home filled with loved ones, plenty of food, and zero cluster headache attacks. Now we enter that time of year for finding the best deal on the best gift for your family and friends. If you know someone with cluster headaches or have family members who struggle to understand what you go through, grabbing a copy of the guide to living with and understanding cluster headaches could be the perfect gift.

Now through Cyber Monday you can grab your copy of Cluster Headaches: A Guide to Surviving One of the Most Painful Conditions Known to Man for $30 instead of $35, or snag an autographed one for $5 off too!

Pain-free wishes,

Ashley S. Hattle