How Are Dysautonomias Diagnosed?



If you have a chronic illness, then you’re likely familiar with the fatigue you just can’t shake. — Katie Willard Virant MSW, JD, LCSW

Dysautonomia is the name used to describe a number of disorders where the nervous system no longer works the way it should. The problems associated with these disorders can range from relatively minor to very severe and in the worst cases can even result in early death.  Dysautonomia disorders can have a huge impact on your daily life which makes it difficult to complete everyday tasks. This can be made even worse by the fact that dysautonomia disorders are often overlooked or misdiagnosed. Unfortunately, without a correct diagnosis, you cannot possibly treat the disorder. This can even have dire consequences. This short article will take you through some of the warning signs for dysautonomias and explain how these disorders can be diagnosed.

Warning signs




As dysautonomia conditions are a range of disorders opposed to one specific disorder, the warning signs for each one can differ depending on the type of dysautonomia it is (head over to our other page [What are the different types of dysautonomias?] for further information on this). Despite this, there are still some symptoms that are commonly experienced across dysautonomia disorders.

These include:

  • Problems with breathing (when it is difficult to breathe, or you often feel short of breath).
  • Feeling dizzy or lightheaded.
  • Feeling sick or problems with digestion.
  • Unexplained tiredness.
  • Feeling confused or experiencing difficulty concentrating.
  • Tightness in the chest or strange/irregular heartbeat.
  • Problems standing still.

If you find that you are consistently experiencing one or a number of these symptoms it may be time to visit your doctor.

It can be trying for people who are ill when friends and family encourage patients to feel happy or optimistic. — Tamara McClintock Greenberg Psy.D.

How will the doctor diagnose a dysautonomia disorder?




The first thing to consider when seeking a diagnosis is that there are a number of other medical and even psychological problems that can cause the symptoms above. This can make it quite difficult to diagnose dysautonomia because the doctor will have to “rule out” these causes before they are able to consider a diagnosis of dysautonomia. The other thing to consider is that because dysautonomia disorders are inherently difficult to diagnose, they can be missed by the doctor or may even be misdiagnosed as something else.

This is why it is important to talk to your doctor. If you and your doctor have met a dead end and you feel that you may be in fact suffering from a dysautonomia disorder, then it doesn’t hurt to talk to the doctor about this. If they don’t take your concerns seriously, don’t be afraid to try another doctor. This doesn’t mean that you would disregard every diagnosis a doctor gives you that you don’t agree with. There is a reason as to why they completed countless years of study and examinations. But you do need to feel comfortable with your healthcare provider as though they are taking you seriously. If you don’t feel this way with your doctor, don’t be afraid to seek out another opinion.

There are two outcomes that can occur from suggesting to your doctor that you might be experiencing a dysautonomia disorder:

  • You may be wrong…. If this is the case, the doctor will simply be able to rule it out. Make sure you understand how and why they are ruling it out. However, you have to ensure they have taken your concerns seriously.

The more unpredictable your pain, the more challenging it is. — Deborah Barrett Ph.D., LCSW

  • The doctor may feel that you are on the right track and that further investigation is required. From here, they will generally refer you to a specialist. The type of specialist you are referred to will normally depend on the symptom that is the most troublesome or the most frequent. For example, if the most difficult aspect is a tightness in your chest, they are likely to refer you to a cardiologist. In this process, the doctor will give you a medical diagnosis that describes the particular symptom you are experiencing (such as “inappropriate sinus tachycardia“, for problems with your heartbeat). This is what the specialist will investigate. The specialist will then work through a number of tests and clinical examinations to rule out other causes. Eventually, the specialist will lead to a diagnosis or discovery that it is caused by something other than a dysautonomic disorder.

Both of these outcomes are helpful as they move you towards finding out what is truly wrong. With this information, you can plan and implement treatment. Head over to our other page on treatments {how are dysautonomias treated?} for further information on this.

For more information on the diagnosis of dysautonomia and what to look out for, please see the links below.