Are Cluster Headaches as Rare as They Say?

Are Cluster Headaches as Rare as They Say? | Rare DiseasesIf 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.

37 thoughts on “Are Cluster Headaches as Rare as They Say?”

  1. Hi there, I actually have a comment\question: Is it common or is there any relation to being diagnosed with 1. CLUSTER HEADACHES & 2. ALS? If so can anyone guide me to any resources for relief of pain and quality of life please. MY 43 year old best friends of 25 years has recently been diagnosed with CLUSTER HEADACHES AND ALS. With both diseases there is no pain relief for headaches , nothing has worked or relieve the excruciating pain and discomfort as far as doctor treatments\med.s and for the ALS as well no pain relief to very little relief in discomfort, pain and aching from ALS disease TREATMENTS from doctor has not worked and NO CURE. It makes me so sad to see the loss of life and his quality of life. Between the 2 diseases he is 75% down, sleeping, and\or just in too much pain to come out of his room. He has little portion of his life that feels good enough to even get out into society and I can see even at those times he don’t feel good. Sorry for the lengthy comment and I THANK YOU in advance for any info., guidance, resources, advice, and any homeopathic supplements that may relief his constant discomfort and pain.

    1. Hi Gina, I apologize it took me so long to reply. I’m so sorry your best friend is struggling with both conditions. I wouldn’t wish cluster headaches on my worst enemy and having a second condition on top of that would make it hard for anyone to live a full life. I don’t know of any established connections between ALS and Cluster Headache, but you’re not the first to bring this up. I know at least three other patients who have both neurological conditions. Does he have high-flow oxygen? It’s the most effective and least detrimental abortive option for cluster patients. There are a lot of options he may not be aware of right now. I suggest looking into Clusterbusters.org for additional information on treatments that help abort and prevent the attacks. Please reach out again if you have more questions.

  2. Hey there! This is my 1st comment here so I just wanted to give a quick shout out and tell you I genuinely enjoy reading your blog posts. Can you recommend any other blogs/websites/forums that cover the same subjects? Thanks!

    1. Hi Al, I suggest reading Bob’s Blog on Clusterbusters.org and subscribing to Tom Termeer (a chronic cluster headache patient) on YouTube who goes by the handle “Clusterhead Survivor“. I’m glad you’re enjoying the blog. There’s another one coming up soon that discusses Headache on the Hill—an annual event in DC where we advocate for headache disorders. Thanks!

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  12. Just got diagnosed today with CH. I’m 46, and also get headaches from TMJ, so my diagnosis took a long time to finally reach, but there’s some relief in finally being able to put a name to the pain I endure twice a year for those few weeks. This is a great resource, thanks for being here.

    1. I’m so sorry to hear you’ve been diagnosed with cluster headaches. It’s a difficult condition to come to terms with. It sounds like you’re episodic like me. Did your neurologist prescribe you high-flow oxygen? Sumatriptan injections? It’s essential to nail down a treatment plan as soon as possible, especially when you’re episodic because it could mean the difference between skipping a cycle and prolonging it. Check out the other blogs on this website. The one on oxygen is the best one I’ve written so far in my opinion. Also, Clusterbusters (www.clusterbusters.org) is an amazing nonprofit organization and support group. They host a conference for patients every year. This year it’s in Denver Sept 13-16. I hope you’re finding good relief and please don’t hesitate to reach out for help or information at ashley.hattle@gmail.com.

      P.S. The book is a great place to start—Shameless plug :D)

  13. For anyone reading this blog post. And gaining valuable information. I give 100% backing to Ashley’s information as it is factual and correct ! Anyone just diagnosed or a seasoned survivor should own her book. It is the bible cluster headaches. From treatments what to do and what most have tried and 1st hand accounts from survivors.
    Own this book. You will save a year of Googling by owning this book and suffer far less because of the information in it !!!

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  22. The next time I learn a weblog, I hope that it doesnt disappoint me as much as this one. I imply, I do know it was my option to read, however I really thought youd have one thing interesting to say. All I hear is a bunch of whining about something that you would repair when you werent too busy searching for attention.

    1. Hi there, it seems the purpose of this letter was lost on you as you apparently do not have cluster headaches nor chronic pain. I am the author of the medical textbook, Cluster Headaches: A Guide to Surviving One of the Most Painful Conditions Known to Man, and there are several articles on this website that focus on education and research. This article, however, was written about my personal experience. If you’d like to actually learn about this condition, I recommend viewing these blogs and checking out clusterbusters.org:

      Are Cluster Headaches as Rare as They Say?
      How to Get & Use Oxygen to Treat Your Cluster Headaches
      3 Ways to Tell Cluster Headaches from Migraines

    2. I just realized this comment is on another post. I strongly encourage you to look into the provided links in this article as well as respect that cluster headaches are a neurological condition classified as nonconvulsive epilepsy. Primary headache disorders and all neurological conditions can’t simply be “repaired.” I hope you respect those in your life who struggle with debilitating conditions instead of chastising them for speaking up and sharing information on their disease. Have a good day.

      Ashley

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