The Lowdown on Lightheadedness

Dysautonomia and POTS

By Ruth Werner
[Pathology Perspectives]

Try this experiment: Settle into a comfortable chair and relax for a few moments. Breathe deeply. Invite a calming, parasympathetic state to take control for a bit. And now, stand up—fast! Hopefully, you didn’t get dizzy and fall over, because your automatic nervous system functions to keep you stable, even during rapid changes in position. But what happens when parts of the autonomic nervous system fail? That is basically what happens with postural orthostatic tachycardia syndrome (POTS), a type of dysautonomia.

Autonomic Nervous System Review

Because this article deals with problems with autonomic function, it is useful to review a few things about the autonomic nervous system (ANS). Readers will remember that the ANS helps us maintain physiological homeostasis: a stable state, even with changing environments.

Structurally, the ANS operates under the control of the hypothalamus and uses networks comprised mostly of motor neurons to do its work. Some of these neurons extend directly from the brain into the body, packaged in cranial nerves. Others emerge from the spinal cord, encased in spinal nerves.

Functionally, the ANS provides motor signals to muscles and glands that allow us to respond to our environment—and we do this at levels below conscious thought or voluntary action. Autonomic neurons help regulate heart rate, respiratory rate, blood pressure, digestion, and myriad other processes that keep us alive. These motor signals are discussed as sympathetic (flight-or-fight) and parasympathetic (rest-and-digest) responses.

What is Dysautonomia?

Dysautonomia occurs when a problem in ANS neurons affects the ways we respond to the environment. This can manifest as suppressed or exaggerated reactions in sympathetic or parasympathetic responses, such as a racing heartbeat, a slowdown in digestive motility, or an inability to sweat. In this way, the term dysautonomia doesn’t apply to any specific problem or pathology. Instead, it is an umbrella term that describes the results of disruptions in normal autonomic function.

Many conditions can be considered types of dysautonomia, and experts have classified them in several ways. Dysautonomia can be local or generalized; it can be acute and reversible or progressive and chronic; and it can be a primary freestanding problem or secondary to some other disease.

Common Types of Dysautonomia

The main focus of this article is postural orthopedic tachycardia syndrome. However, many other types of dysautonomia have been identified, and brief descriptions of some of them follow.

Neurocardiogenic syncope. This common condition involves unpredictable fainting spells. While it is often mild, it can cause falls and risks for serious injury.

Pure autonomic failure. This describes orthostatic hypotension along with many other autonomic challenges, including digestive problems, urinary retention, decreased sweating and heat intolerance, and sexual dysfunction.

Autoimmune autonomic neuropathy. This is an immune system attack on acetylcholine receptors. It can involve sensory problems along with motor disturbances.

Multiple system atrophy (MSA). Unlike other forms of dysautonomia, MSA affects brain function as well as peripheral nervous system function. This progressive condition has aspects of Parkinson’s disease and ataxia (lack of voluntary coordination). MSA usually affects mature people, and it is progressive and terminal.

Other types of dysautonomia. Dysautonomia can be a result of long-term toxic exposures, alcoholism, untreated diabetes, and peripheral nerve trauma that leads to complex regional pain syndrome. Autonomic dysreflexia (a dangerous syndrome seen in people with spinal cord injuries), cerebral salt wasting syndrome, and familial dysautonomia are other examples of autonomic system failures.

What is Postural Orthostatic Tachycardia Syndrome?

Postural orthopedic tachycardia syndrome (POTS) refers to a group of signs and symptoms that include increased heart rate (tachy [fast] + cardia [heart]) in an upright position (ortho [upright] + stasis [state of being]). It is a type of dysautonomia that mainly affects the ability to maintain stable blood pressure, but its impact on many body functions can make it an extremely challenging condition to live with.

It is hard to estimate how many people are affected by POTS. Some experts suggest that somewhere between 1 and 3 million Americans have some kind of dysautonomia, and POTS is one of the most common versions. It is usually diagnosed in women (80–85 percent of patients are women of child-bearing age). While some patients find their symptoms diminish over time, many have it as a lifelong condition. And about 25 percent of patients with POTS have it severely enough that it interferes with their ability to work, drive, or participate in normal daily activities.

POTS Pathophysiology

What exactly goes wrong in the ANS to cause POTS is not well understood. Researchers believe it may have an autoimmune component, because it is often seen alongside several autoimmune conditions, including Sjogren’s syndrome, lupus, myasthenia gravis, and multiple sclerosis. It also affects a population—women of childbearing age—that is affected by autoimmune conditions more often than other groups.

POTS has been seen to develop as a complication of an underlying problem like diabetes or HIV. It is also often seen with Ehlers-Danlos syndrome, hepatitis C, and Chiari malformation, although its connection to these conditions is not known.

POTS involves a problem with maintaining blood pressure when a person changes position in relation to gravity. When a healthy person rises from a reclining or sitting position to standing, the arteries in the neck constrict a bit. This helps move blood to the brain with more force, so the person doesn’t get dizzy. But this slight increase in blood pressure doesn’t happen in people with POTS. Instead, the arteries in the neck stay relaxed, the brain is deprived of blood (causing dizziness or lightheadedness), and the heart beats extra hard to make up for the loss. POTS is identified when the heart rate rises by at least 30 beats per minute upon standing, or when the heart rate is at 120 beats per minute within 10 minutes of standing.

Signs and Symptoms of POTS

The main symptom of POTS is the sensation of tachycardia, or rapid heart rate, which happens when a person goes from reclining to an upright position. This may be accompanied by rapid breathing and a sense of panic, which may serve to prolong the episode. In addition, a person with POTS may have palpitations, chest pain, fatigue, nausea, brain fog, and migraines. Episodes of fainting are possible. Blood flow in the extremities is affected too: Raynaud’s phenomenon may develop in the hands, and blood may pool and discolor the feet and legs.

Because the primary identifying features for POTS are similar to those seen with anxiety disorders, patients are often assumed to have issues with mental health. Ironically, anxiety and depression may develop in a person with POTS, basically because their condition is not appropriately recognized or treated. However, anti-anxiety drugs do not solve the tachycardia that occurs with POTS.

Treatment

There is no cure for POTS or other types of autonomic dystonia. Treatment is aimed at managing symptoms, through several types of interventions. Patients might be advised to raise the head of their beds. High-salt diets combined with up to two liters of non-caffeinated, non-alcoholic fluid per day can help maintain appropriate blood pressure. People with extreme forms of this condition might wear compressive garments to reduce the pooling of fluid in the legs.

Exercise is an important part of POTS treatment for several reasons. It improves heart function, so the tachycardic episodes may feel less extreme. It can help counterbalance negative feelings associated with this disorder, especially since it often affects young people. If POTS symptoms are extreme, patients might be counseled to choose exercises that allow them to be in a reclining position. These might include swimming, rowing, or using a recumbent bicycle.

Many people have POTS that is relatively mild and manageable with these lifestyle adjustments. However, medications for POTS may be necessary. These include drugs that impact heart rate, blood vessel dilation, and how the kidneys retain sodium.

Implications for Massage

Massage therapy has some benefits to offer people with POTS, if we can anticipate and make appropriate accommodations.

People with POTS may feel that their body is unreliable, and that they can’t depend on being able to do the things they need to do. Receiving massage therapy may help boost a person’s sense of inner strength and ability to cope with the challenges of living with this this condition.

Exercise is an important part of the treatment plan for most people with POTS. Tachycardia can be frightening, but experiencing that sensation in association with health and strength can help mitigate that fearful feeling. Experts suggest that manual therapies that promote the ability for people with POTS to exercise can be especially helpful.

What Accommodations Might Be Needed?

If clients who have POTS worry about dizziness or faintness when they sit up or stand up, the prospect of receiving massage might not be especially attractive. However, with a few key accommodations, massage therapy can be as safe, restorative, and supportive for people with POTS as it is for the rest of the population.

Length of session. POTS symptoms are worst after being horizontal for prolonged periods. Clients with POTS will probably do best with relatively short sessions, rather than long, languid ones.

Heat sensitivity. Many people with POTS and other forms of dysautonomia are sensitive to heat. It may be a good idea to not overheat the session room for people with this challenge.

Finish the session with stimulating strokes. While it can be lovely to finish a massage session with relaxing forms of touch that promote peace and tranquility, clients with POTS are more likely to benefit from a session that finishes with techniques that promote alertness. Whether that’s tapotement, rapid effleurage strokes, or something else is up to the individual practitioner. In addition, coaching clients to contract their leg and arm muscles before they sit up can help promote healthy blood flow to minimize symptoms.

Stay close at the end of the session. Because of both the condition and the medications used to treat it, it is a good idea for the massage therapist to attend the client when they come up to a seated position, and to be in the room long enough for them to feel confident about standing up. After we leave the room for clients to dress, we should stay close by in case they have any distress or need any help. These are also clients who may need extra time during their transition back to full function; it may be necessary to make adjustments in the daily schedule for this need.

Encourage electrolytes. While the idea of encouraging clients to drink water after a massage to “flush toxins” has largely been debunked, people with POTS need to drink substantially more liquid than others to maintain appropriate blood pressure. Also, plain water is less useful than water with salt or other electrolytes that promote fluid retention. So, encouraging a client to enjoy an electrolyte drink after a session is an especially supportive measure for their well-being.

Overall, some simple accommodations can make massage therapy a safe, enjoyable, and helpful experience for people who live with POTS. While we don’t expect massage therapy to make a difference in the experience of this condition, our work may help improve the quality of life for people who live with a condition that can be frustrating, challenging, and limiting.

Author note: For more information on living with POTS and massage therapy accommodations for this population, please enjoy my conversation with Kelly Thompson, a massage therapist whose teenage daughter was diagnosed with POTS five years ago. [video link]. I want to offer special thanks to Jason Erickson, a massage therapist who is close to a person with POTS. He can be contacted at www.healthartes.com for more information. And Kelly Thompson, who so generously allowed me to record her input for our video, can be reached at owners@eaganmassage.com.

Ruth Werner is a former massage therapist, a writer, and an NCBTMB-approved continuing education provider. She wrote A Massage Therapist’s Guide to Pathology (available at www.booksofdiscovery.com), now in its sixth edition, which is used in massage schools worldwide. Werner is available at www.ruthwerner.com or wernerworkshops@ruthwerner.com.

Selected Resources

“Dysautonomia: Symptoms, Types, and Treatment.” Medical News Today (July 27, 2017). www.medicalnewstoday.com/articles/76785.php.

Grigoriou, Emmanouil, Jeffrey R. Boris, and John P. Dormans. “Postural Orthostatic Tachycardia Syndrome (POTS): Association with Ehlers-Danlos Syndrome and Orthopaedic Considerations.” Clinical Orthopaedics and Related Research 473, no. 2 (February 2015): 722–28. https://doi.org/10.1007/s11999-014-3898-x.

Gurme, Mohini. 2019. “Idiopathic Orthostatic Hypotension and Other Autonomic Failure Syndromes: Practice Essentials, Background, Pathophysiology.” https://emedicine.medscape.com/article/1154266-overview#showall.

Johns Hopkins Medicine. 2019. “Postural Orthostatic Tachycardia Syndrome (POTS).” www.hopkinsmedicine.org/health/conditions-and-diseases/postural-orthostatic-tachycardia-syndrome-pots.

National Dysautonomia Research Foundation. “What is Dysautonomia?” Accessed October 7, 2019. ﷟HYPERLINK "NULL"www.ndrf.org.

National Institute of Neurological Disorders and Stroke. 2019a. “Dysautonomia Information Page.” www.ninds.nih.gov/Disorders/All-Disorders/Dysautonomia-Information-Page.

National Institute of Neurological Disorders and Stroke. 2019b. “Postural Tachycardia Syndrome Information Page.” www.ninds.nih.gov/Disorders/All-Disorders/Postural-Tachycardia-Syndrome-Information-Page.