Dysautonomia Treatment & POTS Survival Kit: Lifestyle Medicine Management of Postural Orthostatic Tachycardia Syndrome and other forms of Dysautonomia {Lifestyle Medicine}

 Dysautonomia Treatment & POTS Survival Kit: Lifestyle Medicine Management of Postural Orthostatic Tachycardia Syndrome and other forms of Dysautonomia

{Lifestyle Medicine}

Dysautonomia management requires a multidisciplinary and multi-pronged approach to address any underlying contributing conditions as well as modulating symptoms. Dysautonomia refers to several medical conditions that cause an abnormality in the function of the autonomic nervous system leading to trouble regulating some or all of the largely “automatic” functions of the autonomic nervous system. These various conditions can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition and other debilitating symptoms. 

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This post is part 3 of a series. For a general Overview of the Autonomic Nervous System check out part 1 here and learn more about the Various Forms of Dysautonomia in part 2 here!

Dysautonomia Treatment

Since there are many underlying contributors to these conditions, dysautonomia treatment and management of symptoms varies. The presentation of dysautonomia is heterogeneous and often involves several coexisting conditions which must be considered, so treatment plans must be individualized in conjunction with a knowledgeable health care provider. 

Lifestyle and pharmacological management are often considered when deciding on a personalized treatment regimen.  If the dysautonomia is secondary to a known primary condition, management is generally aimed at improving the primary condition and managing the dysautonomia symptoms. In the case of secondary dysautonomia, management is usually aimed at symptom relief.

Medications For Dysautonomia Treatment

Several medications are used for dysautonomia treatment and the management of POTS, although the effectiveness of a given medication varies based on the type of dysautonomia, comorbid conditions and other individual factors. Pharmacologic treatments often take a three-pronged approach and may include:

Heart-rate control with:

• beta-blockers
• Ivabradine which slows down heart rate without affecting blood pressure

Volume Expansion with:

• fludrocortisone (Florinef) a type of synthetic steroid that can cause the body to retain salt and therefore water to increase blood volume
• desmopression
• increased hydration or IV saline

Peripheral Vasoconstrictors like:

• midodrine which acts on blood vessels causing constriction to prevent blood pooling and increase blood pressure
• droxidopa
• pyridostigmine

and other methods.

Lifestyle Approaches to Dysautonomia Treatment

Lifestyle approaches also play a key role in many cases of dysautonomia. There are several lifestyle adaptations that may help  dysautonomia patients reduce and cope with symptoms. Such treatments vary depending on the type of dysautonomia or POTS and may include:

• individualized exercise programs
• a high-salt diet incorporating real sea salt
• compression garments (affiliate link)
• increased fluid intake
• adequate sleep and rest
• inclining the head of the bed a few inches to modulate blood volume
• mindfulness and stress management by incorporating tools such as those in The Whole Cure (affiliate link)
• temperature modulation and support with tools like cooling towels or vests

Dysautonomia Treatment Survival Kit: Essentials for Managing POTs and other forms of Dysautonomia

Water Bottle

Increased fluid and salt intake has proven to be valuable for many with blood pooling, hypovolemia/low blood volume, or hypotension related to dysautonomia (Abed, Ball & Wang, 2012).

Maintaining adequate hydration is thought to raise the level of the stimulatory neurotransmitter norepinephrine, helping to maintain blood pressure (Jordan et al., 2000).  A fluid intake of approximately two liters per day (Grubb B.P., 2008) is often recommended, but this must be individualized under the guidance of a health care professional.

• approximately two+ liters of hydrating fluids/day (depending on the type of dysautonomia)
• my favorite way to stay hydrated and make sure I have safe potable water no matter where I am is to always carry my Clearly Filtered Stainless Steel Filter Water Bottle with me. I can fill it up from any source and still have safe water thanks to the replaceable Affinity Filtration Technology which removes up to 99% of fluoride, chlorine, lead and other common contaminants including mercury, herbicides and pesticides. 

Sea Salt and/or Electrolytes

Sodium and other electrolytes play a major role in maintaining fluid balance and blood volume in the body.

There is evidence that salt supplementation may decrease orthostatic symptoms in adults (El-sayed et al., 1996).  An intake of three to five grams of sea salt (affiliate link) or more for some individuals is typically recommended per day to help those with hypovolemic symptoms of POTS, although this should be individualized for each person based on many factors. Salt should of course be avoided in those with kidney disease or heart failure and is not appropriate for those with hyperadrenergic POTS. 

Sea salt (affiliate link) contains trace minerals beyond sodium and chloride and is free from anti-clumping agents, added iodine and other additives that are typically found in table salt. 

• 3-5 grams of sea salt (roughly 1 gram of salt   = 388 mg of sodium)
• natural electrolyte powders without dyes, additives or artificial flavors and sweeteners
• some people also do well with organic coconut water (affiliate link) which comes in convenient powdered forms to add to water. Coconut water Coconut water is naturally occurring, is very rich in potassium, contains sodium, chloride, and carbohydrates (Chavalittamrong B, Pidatcha P, Thavisri U., 1982).

Compression Socks/Compression Leggings

Compression socks, leggings or support hose and abdominal binders (affiliate links) can be helpful for some POTS patients by lessening peripheral venous pooling and hypotension (Kanjwal, Kosinski & Grubb, 2003). 

• Some studies suggest that the most effective compression hose are 30 mm Hg of counter pressure and go at least waist high (Grubb B.P., 2008), but many find benefits from lower levels of pressure as well. 
• Some of my favorite options are made by RejuvaHealth since they offer a wide variety of styles, compression levels and materials and have worked well even for my clients who are very sensitive to fabrics and chemicals.
• Vim & Vigr also offers tights, socks and sleeves at various compression levels and styles.
  

  Save 15% off all products at Vim & Vigr via this link (you should see the coupon code at check-out; affiliate link).

Balanced Meals and Snacks

It is frequently recommended that POTS patients eat several smaller meals throughout the day in lieu of two or three large ones, since much of your blood is redirected to the digestive tract after eating a large meal to facilitate the digestive process which can exacerbate symptoms (Jansen et al., 1995).

Many also experience fewer symptoms when limiting simple carbohydrates and consuming meals with a balance of protein, healthy fats and complex carbohydrates. This may be due to the role of insulin. Insulin is released by the body in response to consuming carbohydrates or other sources of glucose to help maintain a constant range of blood sugar. Insulin also has important vascular impacts, altering blood flow and contributing to vasodilation especially in the gut area (Muniyappa et al., 2007). 

As with all lifestyle medicine approaches, bioindividuality is important. Food allergies and sensitivities can contribute to symptoms in some people with POTS. Of course, each individual responds differently, so these guidelines must be considered carefully depending on different circumstances.

• focus on smaller balanced meal
• reduce simple and processed carbohydrates
• examine your reaction to gluten and dairy
• be careful about caffeine intake, especially with hyperadrenergic POTS
• avoid alcohol and energy drinks 
• since it is often hard to find convenient solutions for travel and on-the-go that are free of all of my food allergies and sensitivities and still made with quality, organic, real food ingredients, I have been excited to find The Bar Shack. The Bar Shack (affiliate link) allows you to make delicious customized snack and protein bars with ingredients that meet your specific dietary needs and preferences. These are my go-to for travel and unexpected delays away from home.

Pocket Fan, Hat, Sun Protective Clothing

Extremes of temperature, especially heat, often exacerbate POTS symptoms. 

• Air conditioning, body cooling vests, sun shirts, handheld misters, personal fans, hats (affiliate links), layers in case of temperature fluctuation, and quick drying clothing and sheets made or natural fabrics like organic cotton can be helpful in maintaining an even temperature. 
• Cooling towels or vests can help to modulate body temperature by chilling pulse points in key blood vessels to aid the body’s natural temperature regulation mechanisms.

Appropriate Individualized Medications and Medical Documentation: List of medications, allergies, health conditions, treatment plans and doctor and emergency contact information; Medical ID Bracelet

An important part of a Dysautonomia Treatment Survival Kit is medical documentation. Unfortunately, it is not uncommon for some EMTs and ER doctors to lack knowledge of dysautonomia and POTS, so it can be helpful to carry documentation listing that you have “POTS/autonomic dysfunction” as well as your current medications, allergies and emergency contact information. 

• list of current medications, dosages and time of day you take them.
• list of all food or drug allergies,
• “In Case Of Emergency” contact name and phone number, as well as your doctor’s contact information,
• a brief explanation of your important medical diagnoses.
• Dysautonomia International also has a variety of Medical Accommodation Wallet Cards that you can print and keep in your wallet to show to people in situations when you need to sit or lie down because of your symptoms. 

Do you have a medical survival kit?

What do you include in your dysautonomia treatment survival kit?

References:

Abed H., Ball P.A., and Wang L. (2012). Diagnosis and management of postural orthostatic tachycardia syndrome: A brief review. Journal of Geriatric Cardiology. 9: 61-67.

Chavalittamrong B, Pidatcha P, Thavisri U. Electrolytes, sugar, calories, osmolarity and pH of beverages and coconut water. Southeast Asian J Trop Med Public Health. 1982;13(3):427–31.

Grubb, B.P. (2008). Postural Tachycardia Syndrome. Circulation: Journal of the American Heart Association. 117:2814-817. 

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