For people with migraine, filing for Social Security Disability Insurance comes with unique challenges that can make for a long and confusing process. Learn how to qualify for SSDI with migraine—and what to do if your claim is denied.
If you are unable to work due to migraine, Social Security Disability Insurance (SSDI) can provide much-needed financial support. Unfortunately, applying for this benefit is a source of frustration for many people in the migraine community due to the challenges that come with having an invisible and misunderstood disease. We hosted a webinar featuring migraine and disability experts to offer insight into all stages of the disability process and give you the best chance of getting your claim approved.
Panelists for the webinar included Dr. Dawn Buse, licensed psychologist and clinical professor of neurology, Albert Einstein College of Medicine; Dr. Robert Shapiro, neurologist and professor, Larner College of Medicine, University of Vermont; Qasim Amin Nathari, patient advocate; and Stacy Monahan Tucker, founding partner at Monahan Tucker Law.
How does SSDI define migraine as a disability?
We know migraine is a debilitating disease that impacts all parts of a person’s life—from personal and social activities to the workplace—and that attacks can strike with varying degrees of disability and for varying lengths of time. However, for the purposes of SSDI, the Social Security Administration (SSA) specifically wants to know how migraine impacts your ability to work.
To get approved for the SSDI benefit, the SSA needs to determine that you are “too disabled to come to a job and do the work every day,” says Monahan Tucker. “They have very specific things they’re looking for in terms of restrictions and limitations.” For example, the official Social Security Administration definition of disability dictates that your physical or mental impairment must last for a continuous period of at least a year.
“With something like migraine that can wax and wane so dramatically, it’s really important to make sure your doctor is aware of the language that Social Security or insurance companies will be looking for and to frame what you can and cannot do in that way,” Monahan Tucker says. For example, if you have a job that involves lifting objects over 20 pounds and migraine has diminished your ability to keep up with these physical demands, you should make sure that your application states: I cannot lift objects over 20 pounds with consistency.
Steps in the Process of Qualifying for SSDI With Migraine
When you are ready to file a claim for SSDI, the first step is to talk to your doctor so they know how to support you throughout the process.
“Without your doctor’s willingness to sign off on the forms required for disability, your application is essentially dead in the water,” says Monahan Tucker. Your doctor and other medical professionals can also be helpful advocates when it comes to gathering evidence for your claim.
After you submit your application, Social Security will go through a series of steps to determine if you qualify for SSDI. During this process, the SSA will consider any evidence you submit with your application, so the panelists recommend familiarizing yourself with what they are looking for at each of these stages.
Step 1: You Are Unable to Engage in Substantial Gainful Activity
This step involves proving that you cannot work or engage in substantial gainful activity (SGA) due to migraine. To prove this, you must show that migraine prevents you from earning a level of monthly income that enables you to live without support. For non-blind individuals, the SSA defines this level of income at $1470, and for individuals who are blind, the SGA amount is $2460 (as of 2023). This means individuals who earn more than these qualifying incomes per month are considered to be engaging in substantial gainful activity.
Step 2: You Have a Medically Determinable Impairment
Social Security wants to know if your impairment is severe enough to qualify for SSDI. To qualify, you must be able to show that migraine is a “medically determinable impairment”—meaning it can be verified by a doctor and clinical examination.
“Inequitably, unfairly, Social Security will not accept your symptoms as evidence that you have a disability or impairment,” Shapiro says. “The diagnostic criteria for migraine and other primary headache disorders really have no physical examination or laboratory [testing] to confirm you [have migraine]. All you have are what you can tell people, which are your symptoms.”
This is one of the reasons it is so difficult to get SSDI for migraine, and why it’s crucial to document your migraine closely with your doctor prior to submitting your application.
Step 3: Your Impairment Is Equivalent to a Listing in the SSDI Blue Book
To move forward in the qualification process, Social Security needs to find your impairment equivalent to that of a condition in the Listing of Impairments, also known as the Blue Book. Migraine is not listed in this book, so Social Security will often compare it to epilepsy—an unfair comparison, according to Shapiro.
“At this step, where you only have symptoms [to demonstrate your impairment], you have to have an advocate who is called an ‘acceptable medical source,’” Shapiro says, “meaning your doctor, psychologist or a nurse practitioner—somebody who Social Security has designated as being qualified to say they have observed you having migraine.”
Migraine symptoms are often difficult to “observe” in a clinical setting, but Shapiro notes that sometimes this may be as simple as having your doctor turn off the lights in the exam room while you’re experiencing an attack. If this makes you feel better, your doctor can use this to document “a qualifying behavior” to establish migraine as a disabling condition.
If Social Security cannot determine that you have a disability based on the first three steps of the sequential evaluation process, they will move on to steps four and five, where they will assess your ability to perform past relevant work or make an adjustment to other work based on factors such as your age, education and work experience.
What Evidence Should You Collect for Your SSDI Application?
Keep a detailed record of your migraine journey to increase your chances of qualifying for SSDI and potentially speed up the approval process. Monahan Tucker recommends keeping a migraine journal to help both your doctor and the SSA understand what you’re experiencing on a day-to-day basis. Specific things to track in your migraine journal include:
- The number of days with migraine and days with any headache or other migraine symptoms per month
- The days and amount of disability and impairment in your ability to work or perform other important activities due to migraine, headache or other migraine symptoms
- When you get migraine attacks
- Possible migraine triggers
- Any patterns you notice
- Treatments or therapies you’ve tried (and their success or failure)
- Specific work tasks you cannot perform due to migraine
Additionally, Nathari suggests that you retain notes from any appointments you have with your doctors and other healthcare professionals who treat you for migraine or headache. Keep all these notes in one place, along with your migraine journal and any other documentation related to your migraine symptoms to make the SSDI application process as efficient as possible.
What to Do When Your SSDI Claim for Migraine Is Denied
The journey to making a successful SSDI claim for migraine is notoriously long, due in part to the high chance of being denied on your first application. In fact, Shapiro notes that the most recently collected Social Security data from the early 2000s shows that “of all people who were making SSDI claims, 46% were able to get [approved at the initial application stage]. For people with migraine it was half that, 23%.”
Monahan Tucker notes that getting an approval can take anywhere from one-and-a-half to two years, but in some cases it can take even longer. For example, Nathari went through the appeal process two times before finally getting approval after three years.
The process for appealing disability claim denials has three levels:
- Make the initial appeal
- File a motion for reconsideration
- Make the case for your appeal to an administrative judge
“It is unlikely that you are going to be awarded Social Security at the initial appeal level,” says Monahan Tucker. “The administrative judge is usually where most people get awarded.”
Although it can take a while to get to this point, it’s important to stay persistent in your efforts to apply for disability for migraine. Additionally, for those who can afford it, Monahan Tucker says an attorney can help take some of the weight off of you during this process and allow you to focus on your health.
Common Scenarios for People With Migraine Navigating the Disability Process
If you want to learn more about whether you qualify and get an estimate of how much SSDI you may be eligible for, Monahan Tucker suggests creating an account on the official Social Security website. This can also make the process of applying for SSDI easier should you choose to do so in the future.
Want to learn more about navigating common scenarios you may encounter when filing for SSDI for migraine? Watch the full Migraine and Navigating the Disability Process webinar to hear advice from our expert panelists on situations like:
- I recently left my job. Can I make an SSDI claim through my previous employer? (31:22)
- I have never been able to work due to migraine. Am I eligible for SSDI? (33:28)
- I’m self-employed. Can I still submit a claim for SSDI? (36:52)
For more doctor-verified resources on all things migraine, visit our Resource Library.
The American Migraine Foundation is committed to improving the lives of those living with this debilitating disease. To learn more about all of your migraine treatment options, visit the AMF Resource Library. For help finding a healthcare provider, check out our Find a Doctor tool. Together, we are as relentless as migraine.
