Tips for Getting Social Security Disability for Nonepileptic Seizures

As is the case with many disabling impairments, winning a claim for Social Security benefits based on a seizure disorder can be challenging. The Social Security Administration (SSA) requires that you have frequent seizures that interfere with your activities and that are well documented.

Our article on disability benefits for epilepsy goes over the specific requirements for getting disability benefits for generalized "tonic-clonic" (grand mal) seizures and "dyscognitive" seizures that can be a part of epilepsy. But what if you're disabled by nonepileptic seizures (NES)?

It's possible to get disability benefits for nonepileptic seizures. Here's what you need to know.

Nonepileptic Seizures and Psychogenic Nonepileptic Seizures (PNES)

Someone having a seizure or seizure-like episode experiences abnormal movements (like twitching or convulsing) or behaviors (like staring off blankly). Recurrent seizures are generally categorized into two types:

• epileptic seizures, which are caused by unusual electrical activity in the brain, and
• nonepileptic seizures (also called pseudoseizures), which don't involve unusual electrical activity in the brain.

One of the most common types of nonepileptic events is called a psychogenic nonepileptic spell, or psychogenic nonepileptic seizure (PNES). PNESs were once called psychogenic seizures or hysterical seizures because they stem from mental health issues rather than physical problems in the brain.

Symptoms of Nonepileptic Seizures

To an observer, PNES and other nonepileptic attacks look just like epileptic seizures. NES symptoms outwardly mirror those of epileptic seizures and can include symptoms like:

• convulsions with full-body spasms or shaking (similar to tonic-clonic seizures)
• twitching or jerking in the arms or legs
• absence seizures (involving a lapse in awareness), or
• syncope-like episodes (when someone collapses and loses consciousness)

But someone having a nonepileptic seizure will have normal electroencephalogram (EEG) readings because NES episodes don't start in the brain like epileptic seizures do.

What Causes Psychogenic Nonepileptic Seizures?

The most common type of nonepileptic seizures, PNESs, are thought to be caused by psychological issues or stress. Because they aren't caused by electrical activity in the brain, they don't respond to epileptic drugs. Instead, they're often treated with psychotherapy and psychiatric medications.

Can You Get Disability Benefits for PNES?

First, you'll need to show that your nonepileptic seizure disorder is preventing you from doing what Social Security calls "substantial gainful activity" (SGA). If you can work full-time or earn more than the SGA limit ($1,550 per month in 2024), Social Security won't consider you disabled.

If you're not doing SGA, Social Security will consider your medical condition next. For the agency to consider whether you're disabled, you must have a severe, "medically determinable" impairment that limits your ability to function in a work setting. This means you should have a diagnosis of PNES seizure disorder, somatic symptom disorder, conversion disorder, or something similar.

Finally, your PNES can qualify you for disability benefits if your impairment has lasted (or is expected to last) at least a year, and you can show Social Security that:

• your symptoms meet the requirements of a listing, or
• your PNES prevents you from working in any kind of job.

How Nonepileptic Seizure Disorder Can Meet a Listing

If you meet the criteria of one of Social Security's disability listings, you'll automatically qualify as disabled. The SSA may evaluate nonepileptic seizures, including PNES, under the listing for somatic symptom disorder.

To meet the listing for somatic symptom and related disorders (listing 12.07), you'll need to prove that your seizure episodes aren't better explained by another medical or mental disorder. You'll also need to show that you have an extreme limitation in one or serious limitation of two of the following areas of mental functioning:

• learning, remembering, or using information in a work setting
• interacting with supervisors, co-workers, or the public
• focusing on and completing work activities, or
• managing your symptoms and adapting to change in a work setting.

Nonepileptic seizures are caused by psychological conditions and stress, so you might be able to meet the listing for the condition that's behind your seizure events. (Learn more about what it takes to meet the listings for other mental health conditions that could cause seizure-like symptoms, including anxiety, obsessive-compulsive disorder, or PTSD.)

Getting Disability When You Don't Meet a Listing

Even if your condition doesn't meet the requirements of a listing, you might still qualify for disability benefits. Social Security will assess your ability to function in the workplace and how your condition might limit you. For someone with nonepileptic seizures, the residual functional capacity (RFC) assessment will likely include evaluations of both your physical and mental abilities.

Your RFC rating represents the most you can be expected to do, given your medical condition. It will include your "exertional limits," like:

• how long you can stand
• how much you can lift, and
• whether you can bend and stoop.

With a seizure disorder, your RFC will almost certainly include non-exertional limitations too, which Social Security must consider. (20 C.F.R. 404.1569a(c).) Those could include things like:

• difficulty maintaining attention or concentrating
• difficulty understanding or remembering detailed instructions
• needing to take unscheduled breaks at any time, or
• restrictions on working in hazardous environments.

(Learn more about how Social Security assesses your mental residual functional capacity.)

Social Security will use your RFC and nonmedical information like your age and education level to decide if, given your limitations, you can be expected to do your old job or any other kind of work. If the SSA determines that you can't work any jobs because of your nonepileptic seizure disorder, you'll qualify for disability benefits.

Medical Evidence Needed to Prove Your Seizure Disorder Is Disabling

So, how do you prove that your condition meets a listing or is severe enough to prevent you from working? You need compelling medical evidence—and lots of it.

Social Security will need to know exactly how severe your nonepileptic seizures are and how they affect your day-to-day activity. You can explain that by completing an "activities of daily living" (ADL) questionnaire. Be sure your answers are as thorough and complete as possible, as they'll have a bearing on your disability determination.

Social Security will also need to see your medical records from all the health care providers who've diagnosed or treated your seizure disorder, such as:

• doctors
• psychologists and psychiatrists
• clinics
• hospitals, and
• other treatment centers.

Those records should include all your doctors' and psychologists' treatment notes and records of any neurological or psychological tests you've had. You'll also need to provide a list of all the therapies and medications you've tried, including their effectiveness and any side effects.

A statement from your doctor or psychologist explaining how your seizure disorder has impaired your ability to function can carry a lot of weight, as long as the other medical evidence in your file supports it.

Learn more about the medical evidence Social Security requires for claims based on mental conditions.

Tips for Getting Social Security Disability Based on a Seizure Disorder

The following checklist of tips might be helpful if you're trying to get disability benefits based on a seizure disorder:

• Try to be seen by a physician when your seizures occur.
• Keep a diary of your seizure episodes.
• Keep friends and family up to date with your condition and how often you have seizures.
• Stay compliant with the medications your doctor has prescribed.

Why are the items on this checklist so important? Let's look at each in detail.

Why See a Doctor After a Seizure Episode

If you have seizures regularly, you might believe that a trip to a doctor or hospital after an event means hours of waiting with no real medical benefit. And, more often than not, that might be the case.

But Social Security evaluates seizure disorder cases based on how often seizures occur. That means making these doctor visits to document each seizure event is essential. Without that documentation in your medical records, there's no proof that you have frequent seizures.

You should see a health care provider after a seizure even if you feel fine, because doctors may be able to detect post-seizure residual effects and will document them in your medical records.

The Importance of Keeping a Diary of Your NES Events

You should keep a personal record of seizure occurrences so that you can confirm information from your doctors, family, and friends about how often your seizures occur. Although it can't replace a doctor's records, Social Security will likely review your seizure diary, and it can serve to strengthen your claim.

Why You Need to Keep Friends and Family Updated

Disability claims examiners often contact applicants to ask about their ability to perform everyday activities (called "activities of daily living" or ADLs). You'll likely be asked to complete an ADL questionnaire.

Social Security might also call your friends and relatives. These calls are known as third-party ADL calls, and the information gathered during these conversations can be used to help justify denying your claim. That's why you need to ensure that the people you list as contacts on your disability application—friends and family—are fully aware of your medical condition and how often you have seizures.

Staying Compliant With Prescribed Medication

Disability examiners and judges will review your medical records to learn if you've been prescribed medication. Prescriptions alone can help validate the severity of a medical impairment.

If your medical records show that your doctor has prescribed medication for you, but you haven't been taking the prescribed medicine, it can hurt your chance of getting your disability application approved. That's because it raises the question of whether you could work if you took the prescription as directed.

Answering that question can be difficult because the anti-seizure medications used to treat epilepsy generally aren't effective for treating nonepileptic seizures. And some anti-seizure drugs have severe side effects, such as:

• loss of coordination
• speech problems
• confusion
• fatigue, and
• vision changes.

But lacking an answer, a disability claim will almost always be denied if the applicant isn't taking the prescribed medicine. For more information on this, including some exceptions to the rule, see our article on disability and failing to take your medication.

What If Social Security Denies Your Disability Claim for PNES?

Social Security initially denies many disability applications. Most successful disability claims are granted after an appeal. And about half of the appeals that make it to a disability hearing are successful.

So, the first thing you need to do if your disability application is denied is to carefully read your denial letter to learn why your claim was denied. Are you eligible for the disability benefits you applied for? (Social Security Disability insurance (SSDI) and Supplemental Security Income (SSI) disability have different eligibility requirements.)

If you meet the legal and financial requirements for one of the disability programs, Social Security likely determined that you didn't meet the medical requirements for disability. If you receive a medical denial, the letter should explain why your claim was denied. Social Security issues medical denials for many reasons, such as:

• your impairment hasn't lasted long enough
• Social Security doesn't believe your seizure disorder really keeps you from working
• there isn't enough medical evidence to prove your PNES is severe and persistent, or
• Social Security failed to consider an important piece of your medical evidence.

If you receive a medical denial, you'll want to review your entire Social Security file to make sure critical medical records aren't missing. You might also consider speaking with a disability lawyer. An experienced attorney knows how to assemble the needed evidence and present your strongest case.

Learn more about what you can do if Social Security denies your disability claim.