Social Security Disability Benefits for Dysautonomia or POTS

Dysautonomia (dis-ah-tuh-NO-me-ah), also called "autonomic dysfunction," is a medical term that covers several disorders of the autonomic nervous system, including postural orthostatic tachycardia syndrome (POTS). The autonomic nervous system regulates involuntary body functions such as heart rate, blood pressure, hormonal functions, and digestion.

Symptoms from dysautonomia disorders—such as orthostatic hypotension, tachycardia (racing heartbeat), or fainting—can significantly interfere with your activities of daily living and may even prevent you from working full-time.

Is Dysautonomia a Disability?

If you have medical evidence showing that you can't work for at least a year, and you meet the financial eligibility criteria for Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI), you can qualify for disability benefits.

You'll also need to provide Social Security with medical records containing any tests or imaging used to make your diagnosis, as well as doctor's notes detailing ongoing treatment for your symptoms and any functional limitations you have as a result.

Symptoms of Dysautonomia

Because dysautonomia disorders can affect any body system, the exact symptoms and severity of dysautonomia differ among patients. Common symptoms can include:

• fatigue
• fainting (syncope) or feeling like you're about to faint (presyncope)
• digestive difficulty (bloating, nausea, or diarrhea)
• headaches
• nerve and muscle pain
• anxiety
• sleep disorders, and
• sensory disorders.

Make sure that you tell your doctor about any symptoms you have that you think might be caused by autonomic dysfunction.

Diagnosing and Treating Dysautonomia

Doctors generally diagnose dysautonomia disorders by reviewing your medical history and performing a physical examination. Your doctor may ask you to perform the following tests:

• a neurologic exam, to evaluate how well you can move around and respond to sensory stimuli (such as tapping your knee)
• autonomic testing, such as an electrocardiogram or EKG, to monitor electrical activity in your heart and detect changes in blood pressure
• a Valsalva maneuver, a breathing test that measures how well your body compensates for changes in the amount of blood that returns to your heart, and
• a tilt table test, which monitors how your body responds to changes in position while you're reclining on a stretcher.

Treatment for dysautonomia consists of managing symptoms. Your doctor may recommend lifestyle changes, such as drinking more water, increasing the amount of salt in your diet, or getting more exercise. Medications (such as midodrine and fludrocortisone) are sometimes prescribed to help people with dysautonomia manage their blood pressure.

Keep a record of what you've tried to reduce your symptoms. Social Security needs to see that you've tried any available treatments in order to manage your condition before the agency can determine that your symptoms are severe enough to keep you from working.

Are There Different Types of Dysautonomia?

Dysautonomia is a category that covers several different disorders specific to the body system affected, so you may have received a diagnosis of one of the following conditions:

• Postural orthostatic tachycardia syndrome (POTS) causes your heart to beat faster than it should when you stand up after sitting down.

• Pure autonomic failure (PAF) is a neurodegenerative disorder that is caused by the buildup of a protein in nerves branching out from the brain and spinal cord.

• Orthostatic hypertension is similar to POTS because it results in dizziness when standing up, but is caused by low blood pressure.

• Inappropriate sinus tachycardia (IST) happens when your heart beats very rapidly for no reason.

• Neurocardiogenic syncope (NCS), also known as vasovagal syncope or a "fainting spell," is a sudden drop in heart rate and blood pressure, usually in response to stress.

• Neurally mediated hypotension (NMH) occurs when your body has difficulty regulating blood pressure after you've been standing for a long period of time.

• Multiple system atrophy (MSA) is a rare type of degenerative dysautonomia that can cause loss of motor function and make it difficult to move around. (MSA has an exceptionally poor prognosis; see our article on getting fast-tracked disability for MSA.)

Can You Get Disability Benefits for Dysautonomia?

Some people with dysautonomia are able to manage their symptoms with a minimal impact on their activities of daily living. It's unlikely that these people will qualify for disability benefits based on dysautonomia alone. But others may have more severe symptoms that don't respond well to treatment. Their symptoms can make jobs requiring standing, balance, and coordination too difficult to perform safely.

Do You Meet a Medical Listing?

To determine whether your dysautonomia is disabling, the Social Security Administration (SSA) will look at your medical records to see if you have a complication from dysautonomia or a related disorder that might meet or "equal" the requirements of a listed impairment. Listed impairments are disorders that the SSA has determined are automatically disabling.

Dysautonomic disorders aren't, by themselves, listed impairments. But because dysautonomic disorders are frequently comorbid (occurring at the same time) with other diseases, you may have another condition severe enough to meet a listing. Cardiovascular, neurological, or digestive system issues are among the most common comorbidities with dysautonomia and have their own categories in Social Security's "Blue Book" of listed impairments.

Does Your RFC Prevent You From Working?

If you don't have a condition that meets a listing, Social Security will decide whether your symptoms prevent you from doing the jobs you've done in the past. The agency does this by reviewing your medical records to see what restrictions you have that could limit the types of jobs you can do, a process called "assessing your "residual functional capacity" (RFC).

A typical RFC for somebody with dysautonomia will likely include restrictions on the following:

• whether you can work at heights or around heavy machinery, due to the possibility of fainting
• how long you're able to sit, stand, or walk, and
• how much weight you can lift and carry.

Restrictions in your RFC are based on how severe your symptoms are. The more restrictions you have in your RFC, the less likely you'll be able to perform certain jobs.

If your RFC contains enough restrictions to rule out your past jobs and all types of work (for example, you need to lay down throughout the day, or you can't rise to stand from a sitting position), Social Security will find that you qualify for disability benefits. For more details on how the SSA makes this assessment—including special rules that apply to people over the age of 50—see our section on RFCs.

How to Apply for Disability Benefits for Dysautonomia

Social Security provides several methods for you to start your application for benefits.

• File online at ssa.gov. Note that people filing for SSDI can complete their entire application online, but if you're filing for SSI, you'll need to speak with a representative from Social Security before you finish your application.
• File over the phone by calling 800-722-1213 from 8 a.m. to 7 p.m. Monday through Friday. If you're deaf or hard of hearing, you can use the TTY number at 800-325-0778.
• File in person at your local Social Security field office.

Even if you're just starting your initial application for disability benefits, you might consider getting help from an experienced disability attorney or advocate. A representative can help you gather and submit your medical documents, handle communications with the SSA, and represent you at a disability hearing.