Dysautonomia 101

If you or a loved one has recently been diagnosed with dysautonomia, the first question you may be asking is, “what exactly is dysautonomia?” If that's you, you’re in the right place – this page provides the information you need so you can formulate a plan to move through and beyond this diagnosis. 

What is Dysautonomia?

Dysautonomia is the umbrella term for a set of medical conditions that result from a problem with your autonomous nervous system (ANS).^[1] Conditions that may feature dysautonomia as part of their symptoms include Parkinson’s disease, dementia with Lewy bodies, Ehlers-Danlos syndromes, postural orthostatic tachycardia syndrome (POTS), and HIV/AIDS. 

Your ANS controls a range of bodily functions you generally don’t think of – the “automatic” functions of your body. These include regulating your heart rate and blood pressure, controlling your breathing and digestion, and body and skin temperature control, among other functions.  

Dysautonomia can affect any or all of these functions of the ANS. Thus, people living with dysautonomia find it challenging to regulate these “automatic” functions and may have blood pressure problems, frequent lightheadedness and fainting, balance problems, chest pains and abnormal heart rates, migraines and frequent headaches, erectile dysfunction, chronic fatigue, and more. In severe cases, when left untreated, it can result in malnutrition and even death. 

There is no cure for this condition. Instead, symptoms must be managed through a combination of therapies and lifestyle changes, as suggested by your healthcare provider. 

Some common lifestyle adaptations include^[2] increasing the intake of fluids (water) and salt, eating smaller meals, changing your diet to include more lean proteins and reducing carbohydrate intake, avoiding alcohol, elevating your head when you sleep, and taking certain medications. 

You should build a treatment plan with your healthcare provider, who will advise you on the most efficient strategy for managing your dysautonomia. You can also explore some lifestyle changes but clear them with a professional before trying making any change. 

Consuming additional fluids and salt is particularly essential in maintaining dysautonomia. This helps increase blood volume and can reduce issues with hypovolemia, hypotension^[3], and blood pooling. One easy solution for those who don’t want to alter their diets too much is to opt for salt tablets, and Klaralyte can help you manage both your sodium and potassium intake. 

However, consuming too much salt can have negative health consequences. Remember, consult with your doctor about what dosage of additional salts is right for you. 

Quick Facts About Dysautonomia

• Dysautonomia affects over 70 million people worldwide^[4], so don’t worry – you’re not alone out there. 

• This condition can appear in anyone, regardless of age, gender, or race. It affects men and women equally. 

• It is possible to have familial dysautonomia^[5]. If both your parents have the gene, you can inherit it even if they do not show any symptoms. This type of dysautonomia generally shows up in infancy and is particularly prevalent in people with Ashkenazi Jewish ancestry. 

• Despite its high incidence rate, dysautonomia remains a highly misdiagnosed condition^[6]. There is little awareness about its existence among the medical community, especially in marginalized communities and among community-based healthcare professionals. Due to this concern, it’s essential to do your research before visiting a physician. If you suspect you have dysautonomia, take the time to find a professional who is educated about it. If you have already been diagnosed, look for a doctor who has extensive experience treating dysautonomia patients. 

• Dysautonomia can occur as a result of other medical conditions, such as multiple sclerosis, lupus, and Parkinson’s. There is also a high comorbidity rate between people with Ehlers-Danlos syndrome^[7] and those with dysautonomia. 

• Currently, there is no cure for the condition, advocacy groups and non-profits like Dysautonomia International are funding research to explore better treatments and possibly a future cure. Depending on the type of dysautonomia you have, you may find your symptoms improve^[8] over time. 

• Lack of a cure should not dishearten you. There are several treatment and management options that help address symptoms. Following the management plan of your physician can help you lead a relatively regular life (this may differ depending on the type of dysautonomia). 

Types of Dysautonomia

There are several types of dysautonomia^[9]: 

• POTS: A disorder that causes problems with blood circulation and can result in an abnormally fast heartbeat. Symptoms include fatigue, headaches, dizziness, fainting, chest pains, and shortness of breath. It affects between 1-3 million Americans, and 80% of POTS patients are female. 

• Familial Dysautonomia: Familial dysautonomia is heritable and generally affects people with Ashkenazi Jewish ancestry. This is one of the most severe strains, even with modern medical advances, about 50% of patients live to be 30 years old^[10]. It can result in lower sensitivity to pain and problems regulating body temperature, among other symptoms.

• Neurocardiogenic Syncope (NCS): This is the most common strain, there are tens of millions of people with neurocardiogenic syncope in the world. It affects the ANS’s ability to maintain blood flow to the brain. Most people experience a relatively mild form of NCS and will only experience one or two fainting spells in their lifetimes. However, some people are afflicted by a more serious strain and may faint several times a day. This can lead to additional health issues, like broken bones and traumatic brain injuries. Triggers that can cause an NCS attack include dehydration, alcohol use, tight and constrictive clothing, and high external temperatures. 

• Multiple System Atrophy (MSA): Like familial dysautonomia, MSA is another life-threatening type of dysautonomia. It generally develops between 50 and 60 years of age but may develop any time after age 30^[11]. Life expectancy is about 10-15 years following diagnosis^[12]. It is also rare and affects about 4 in 100,000 people^[13]. Symptoms include problems regulating your heart rate, bladder control, erectile dysfunction, and low blood pressure. 

• Diabetic Autonomic Neuropathy: This is a secondary dysautonomia that develops in diabetics. About 20% of diabetics– 69 million worldwide – will develop this form of dysautonomia. Symptoms include problems regulating your heart rate,  malfunctioning blood pressure and blood glucose levels. Other issues that result from these symptoms include hypotension when you stand, an increased heart rate, and respiratory problems. 

Conclusion:

A dysautonomia diagnosis is alarming, especially if you’ve just been just diagnosed. However, it is a manageable condition, especially if you have a milder version.  

One of the best ways to manage dysautonomia symptoms is to increase fluid and salt consumption, as advised by your physician. You can alter your diet to increase your salt intake. However, taking salt tablets like Klaralyte make it convenient, and also simplify tracking the salt you consume without changing your preferred diet.

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