Dysautonomia: A Common but Commonly Undiagnosed Condition

Dysautonomia is not a diagnosis but an umbrella term that refers to dysfunction of the autonomic nervous system (ANS), which can have a variety of complex causes. To better understand what dysautonomia is and what may cause it, we first need to have a basic grasp of the human nervous system.

Most of you are undoubtedly familiar with the central nervous system (CNS). The CNS is composed of the brain and the spinal cord, the latter which flows from the base of the brain stem into the spinal canal and is protected within the hard bony spine. But there is another system outside the CNS that bridges the gap between the CNS and the body. That system is called the peripheral nervous system (PNS).

The PNS is composed of two main branches: the ANS and the somatic nervous system (SNS). While the SNS is responsible for voluntary movements, such as operation of the skeletal muscle, the ANS controls involuntary processes, such as innervating smooth muscle within the vasculature and regulating bowel movements.

The ANS is further subdivided into the sympathetic, parasympathetic, and enteric nervous systems. The sympathetic and parasympathetic branches have somewhat opposing functions: while the sympathetic nervous system is responsible for responding to all the stresses of daily life (e.g., the fight or flight response), the parasympathetic branch instructs the body to relax, rest, and digest. Meanwhile, the enteric nervous system controls the nitty gritty of digestion, including motility, nutrient absorption, and the release of chemical messengers into the blood stream.

One of the major chemical messengers of the sympathetic branch of the ANS is epinephrine, also known as “adrenaline.” The neurotransmitter, norepinephrine, is converted into the hormone, epinephrine, with the help of cortisol. Epinephrine stimulates adrenoreceptors, constricting blood vessels and increasing heart rate, blood flow to skeletal muscle, core temperature, sweat production, and glucose levels.

Acetylcholine, meanwhile, is one of the major chemical players in the parasympathetic nervous system. One of the major nerves in this system is the tenth cranial nerve, otherwise known as the “vagus nerve.” Stimulation of the vagus nerve can decrease heart rate and help to calm the sympathetic nervous system. For this reason, vagus nerve stimulation is a popular means to reduce anxiety, as well as treat autonomic dysfunction, and can involve methods such as slow-breathing exercises or yoga.

While one or more branches of the ANS may be disturbed in dysautonomia and symptoms across people can be highly individual, according to Freeman et al. (2015) in their book, The Dysautonomia Project, there are seven top signs and symptoms of dysautonomia:

Difficulty standing still
Fatigue
Lightheadedness
Nausea and other gastrointestinal symptoms
Brain fog or mental clouding
Palpitations or chest discomfort
Shortness of breath or difficulty breathing

Dysautonomia can be further subdivided into three broad causes:

1. Diseases of Autonomic Development – These cases tend to arise during infancy or childhood and may due to a rare mutation or syndrome, such as Phenylketonuria (PKU).
2. Autonomic System Malfunction – These are usually seen in adults (although subclinical symptoms may have been present since childhood) and reflect changes in the function (physiology) of the ANS. This can be secondary to a condition such as Ehlers-Danlos syndrome, autoimmunity, or Type 2 diabetes, or may be the result of medications, radiation exposure of the neck (e.g., treatment of various lymphomas), or alcoholism.
3. Autonomic System Failure – These cases tend to occur later in life, are usually caused by some sort of neurodegenerative condition such as Parkinson’s, and are the result of damage to fibers of the ANS because of the disease process.

While some individuals may only experience episodic challenges with dysautonomia but are relatively unimpaired, others may have ongoing problems that lead to significant impairment. In fact, some people with dysautonomia may be so impaired that they’re unable to leave their beds for long periods of time.

So, treatment interventions. How do people with dysautonomia relieve their symptoms? For people who have mild-to-moderate symptoms, non-therapeutic interventions may be all you need to find significant improvement in your symptoms. They include:

1. Increasing your water and sodium intake. Since a lot of people with dysautonomia (especially the form known as Postural Orthostatic Tachycardia Syndrome or POTS) have lower-than-normal blood volume, it’s important to bulk up on liquids and increase salt intake to help retain those fluids. But beware! Drinking cold liquids can sometimes trigger epinephrine release and dysautonomic symptoms. I personally have found greater success chugging lukewarm water throughout the day. I know it sounds gross but it works for me.
2. Exercise. If you can, daily cardiovascular exercise, especially involving your legs, is really important to help retrain your ANS to function better. Some people may have zero tolerance for exercise and should work with a medical health professional to try to slowly work up some tolerance. But also choose your exercise times wisely. Many people with dysautonomia find mornings are the worst. So if you can, exercise later in the day when you’re least vulnerable to a flare-up. But just remember, because your legs help to pump blood back into the rest of your body, they’re essentially your second heart, so make use of them!
3. Compression garments. Similar to the above concept of exercise, these socks help to keep blood from pooling in your legs.
4. Small and frequent meals. Large meals shunt a lot of blood to your digestive system, potentially worsening symptoms. So eating smaller meals helps to prevent this. In addition, eating frequent meals and snacks helps to regulate your blood sugar better, which may keep your ANS from going on a glucose sugar ride throughout the day.
5. Physical counter maneuvers. These include things like avoid standing still for long periods of time. Keep cool: heat can trigger an episode. If you take showers, sit on a shower stool. Also, since symptoms are often worse in the morning, consider taking a shower at night instead. Or, if you’re strange like me, forego showers altogether and take baths. Just be careful not to make the water too hot.
6. Avoid stress but also plan for unavoidable stress. Stress, both emotional and physical, can be a major trigger even if that stress is “fun” like a birthday or dinner party. So take plenty of breaks when possible, keep up with fluids, and maybe even try some relaxation exercises before the event.
7. Shit happens. No matter how hard you try, there are just gonna be some days you lose the dysautonomia battle. So be kind to yourself. There’s always tomorrow.

For some people, however, non-medicinal interventions simply aren’t enough and they require medications to help them get through the day. These can include:

1. Medications that help with salt retention
2. Vasoconstrictors
3. Certain blood pressure medications
4. Stimulants
5. SSRIs
6. Benzodiazepines
7. IV saline
8. Droxidopa (for individuals with autonomic failure)

Well, I hope much of this information has been helpful to those interested in dysautonomia, either for themselves, for a friend or family member, or for professional interests. Much of the information provided here can be found in the book, The Dysautonomia Project, by Freeman et al. (2015) and is a great guide for both patients and practitioners alike. Please feel free to note in the comments if you have any other book or article suggestions. I’m always eager to read and learn more!