Social Security Disability Insurance (SSDI) is designed to provide financial support when you're suffering from a condition that makes it impossible for you to work and earn a living. But what happens if your debilitating condition comes and goes, as it does with cluster headaches?
About one out of every 1,000 people in the U.S. suffer from cluster headaches. And although the pain is often excruciating, it's not constant. The intermittent nature of cluster headaches can make it difficult to prove your disability.
So, is it possible to get Social Security disability benefits for cluster headaches? The answer is almost as murky as the cause of the painful condition itself.
Cluster headaches are loosely defined as intense headaches that are cyclical and occur in clusters. That means you may have them every day for several weeks or months. Each cluster of headaches is followed by a period of remission when you have no attacks. That remission period can last several weeks, months, or even years.
The pain of a cluster headache often occurs on one side and can include debilitating eye pain. Like migraines, cluster headaches are often chronic.
The exact causes of cluster headaches remain mysterious, but doctors have made some observations about who is more at risk. For instance:
Both cluster headaches and migraine headaches can cause severe pain on one side of the head, usually around the temple, forehead, and sinuses. But cluster headaches and migraines don't feel the same. And they don't follow the same course.
Migraines are severe headaches that can last several hours to several days. Cluster headaches are a series of severe headaches that come and go over a period of weeks or months, but each headache usually only lasts half an hour to around an hour.
Migraine headaches are usually described as a pulsing or throbbing pain. Cluster headache pain is often described as gripping or stabbing, not pulsing. The pain can be more severe than migraine headaches. But a migraine headache tends to last longer.
Physical activity, lights, sounds, and even odors can intensify migraine pain. Cluster headache sufferers may also have sensitivities to light and sound.
Migraine sufferers often get some warning symptoms before the onset of pain. Although migraine-like nausea and aura can precede cluster headaches, they tend to come on quickly and strike without warning.
The symptoms of cluster headaches can vary somewhat from person to person. The most common symptoms include:
A cluster period—a time of frequent headaches—generally lasts 6 to 12 weeks. After that, the headaches tend to stop on their own. That remission can last several weeks, months, or even years.
During the cluster, headaches usually occur every day, sometimes several times a day. And they frequently strike around the same time every day—often coming at night, an hour or two after you've gone to bed. Episodes generally last 15 minutes to around three hours.
The exact cause of cluster headaches isn't known. Medical research suggests the hypothalamus plays a role. It's a tiny gland in the center of your brain that regulates body temperature, daily physiological cycles, and other processes.
Unlike migraines and tension headaches, cluster headaches aren't generally associated with triggers like food, hormonal changes, or stress. They can be seasonal but aren't allergy related. However, once a cluster period has begun, drinking alcohol can quickly bring on an attack.
The way cluster headaches come and go with little warning can make treating them challenging. A cluster headache patient might suffer from recurring episodes or really long periods of intense pain.
Cluster headache sufferers have several options for the treatment of their immediate symptoms. The two used most often, oxygen therapy and triptans, a family of drugs also used to treat migraines, can effectively relieve immediate pain. But they do nothing to shut down the cluster.
Preventive therapies can be used at the onset of a cluster period to suppress, minimize, or eliminate additional headaches. How frequently your headaches occur and how long your clusters tend to last will determine the specific medicines used.
The most prescribed preventive therapy is the calcium channel blocking agent verapamil. It has relatively mild side effects, but it can take some time to be effective, and it doesn't work for everyone.
Doctors sometimes prescribe corticosteroids like prednisone to patients who've recently begun having cluster headaches. They also prescribe corticosteroids for patients whose clusters tend to be short, with long remissions. That's because serious side effects can come with long-term use.
Other therapies, including the bipolar medication lithium carbonate, non-invasive vagus nerve stimulation (VNS), and nerve blocks, may be effective for some people.
It's important to talk to your doctor about the best treatments for your condition, because when you apply for disability benefits, the Social Security Administration (SSA) will want to see that your doctor has prescribed several different types of treatment and that they haven't helped.
If you apply for disability due to cluster headaches, you might find that the claims examiner gives your disorder the same amount of consideration as other impairments that don't have a clear cause–meaning not much. (Other conditions without clear causes include fibromyalgia and chronic pain syndrome.)
Social Security will evaluate an applicant with cluster headaches the same way it evaluates someone with migraine headaches. First, a claims examiner will decide if your cluster headaches are a severe "medically determinable impairment" (MDI). Here's what you need to pass the MDI step:
For something like cluster headaches, for which the only evidence is often a patient's complaints of pain, it can be difficult to get past this first step.
It can also be hard to qualify for Social Security disability benefits for cluster headaches because they're intermittent. A cluster period usually ends within a few months, and SSDI requires that you be disabled for at least 12 months to qualify for benefits.
But the fact that the claims examiner is likely to deny benefits at the initial application stage doesn't mean that a claimant with severe cluster headaches can't win disability benefits on appeal.
At an appeal hearing, the administrative law judge will look at:
For more information about how Social Security evaluates headache disorders, see our article on disability benefits for migraine headaches.
To receive disability benefits for cluster headaches or any other condition, you must first apply for them. Social Security has traditionally offered in-person, telephone, and online applications.
The Social Security Administration closed field offices to visitors in October 2020 due to COVID-19 concerns. Some offices have resumed in-person meetings (by appointment only). Check with your local field office to see if they are currently taking in-person disability applications.
To apply for disability benefits by phone, call 800-772-1213 Monday through Friday between 8 a.m. and 7:00 p.m. to speak to a representative. But expect long wait times. TTY is available for the hearing impaired at 800-325-0778.
The most convenient way to apply for Social Security disability benefits is by filling out the online application. You can complete the process anytime you like and from anywhere—even outside the United States.
You don't have to complete the online application in one session. Once you begin the online process, you'll receive an application number. With it, you can stop and start your application as often as you need to without losing the information you've already entered.
No matter how you file your application, there are certain documents you'll need. So, before you begin, gather as many of the following as you can:
Don't delay starting your application because you're missing some of these documents. SSA representatives can help you gather anything you're missing. For more on what happens after you file your application, see our article on the SSI disability application and determination process.
Disability decisions generally take three to four months. You'll be notified of the determination by mail. If Social Security denies your claim, you have the right to appeal the decision. To learn more about the appeals process, see our article on appealing denied SSDI claims.
Updated March 8, 2022