DISCLAIMER: This page exists because of our own personal journey. In June 2025, after the owner's son was diagnosed with POTS and dysautonomia, we experienced firsthand how challenging it can be to navigate these symptoms without a clear path forward. This page is a resource designed to provide easy-to-understand information based on our personal experience and insights gained from the Dysautonomia Conference of 2025. Please note that while I am a healthcare provider, I am not your personal healthcare provider. The information on this page is for educational purposes only and is NOT medical advice. You should always do your own research and consult with your personal healthcare team to make decisions about your health.

Understanding POTS & Dysautonomia

For more information about the research discussed here, please visit the Dysautonomia Conference website linked below.

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What is Dysautonomia?

Dysautonomia is the term for a dysfunction of your autonomic nervous system, the part of your body that runs everything automatically. This system is responsible for regulating crucial functions like your heart rate, blood pressure, breathing, digestion, and temperature control. Because it regulates so much, a problem with this system can cause a wide variety of symptoms, including dizziness, fatigue, fainting, chronic pain, headaches, abnormal sweating, and more.

There are many forms of dysautonomia, but we will be focusing on postural orthostatic tachycardia syndrome (POTS), as this is what we are personally navigating. POTS is a condition where the body has an abnormally fast heart rate (tachycardia) when standing up, which is caused by inadequate blood flow. Keep in mind, however, that you can have symptoms of dysautonomia without the tachycardia or even a drop in blood pressure. Because the symptoms are the most important factor, we would approach treatment in much the same way. While the things we have learned could be beneficial for other forms of dysautonomia, we are providing information specifically from our personal experience and research into this condition.

Postural Orthostatic Tachycardia Syndrome

Common* Criteria

■ Orthostatic tachycardia > 30 bpm

❑ >40 bpm in children (12-19 yo)

■ No orthostatic hypotension

❑ ΔBP > 20/10 mmHg

■ Symptoms with upright posture

❑ better with laying down

■ Chronic symptoms > 3 months

*Although it's helpful to have a formal diagnosis of dysautonomia, it's not a requirement to begin treating your symptoms, as the disorder is a syndrome and not a single disease. Since symptoms can vary widely, the most effective approach is to treat what you're experiencing, regardless of the official label. For example, if you're dealing with dizziness upon standing, you can focus on increasing your fluid and salt intake, wearing compression garments, and elevating the head of your bed.

Why Do I Feel Dizzy When I Stand Up?

Many people with a common type of dysautonomia called POTS (Postural Tachycardia Syndrome) feel dizzy or lightheaded when they stand up. This happens because of a chain reaction in your body:

Gravity pulls blood down. When you stand up, gravity naturally pulls blood into your legs and belly.
Less blood goes back to your heart. For people with POTS, their body can't effectively push that blood back up to the heart.
Your heart tries to compensate. To make up for this, your heart starts beating faster to get enough blood to your brain. This is why a key symptom of POTS is a rapid increase in heart rate when you stand up.
Less blood to the brain. Even with a faster heart rate, not enough blood reaches your brain. This is what causes the symptoms of dizziness, brain fog, and fatigue.

It's helpful to think of your blood vessels like a leaky pipe. When you stand up, the pressure drops because the blood is pooling in your legs, and not enough is making it to your brain.

What Can I Do to Help My Symptoms?

While a diagnosis from a doctor is important, you don't need to wait to start treating your symptoms. A doctor can work with you to find the right treatment plan, but many people find relief with some simple strategies.

Increase Fluid and Salt Intake: Since a key problem is low blood volume, increasing daily intake of water and salt is a primary strategy of most doctors and can be done prior to getting in to see your doctor. Our son's doctor recommended a daily goal of 3-5 liters of water. To help him meet his sodium needs, he takes four Relyte Hydration Pills per day (two in the morning and two in the evening), which provide 1,180 mg of sodium. It's important to work with a doctor to find the right balance of fluids and electrolytes.
Wear Compression: Compression socks or garments can help prevent blood from pooling in your legs.
Move Your Body: Gentle exercise is an important part of managing POTS. Focus on activities that don't involve a lot of standing, like swimming, rowing, or recumbent biking. We can help you with this at CD Physical Therapy. Please reach out if you would like to start a training program with us.
Listen to Your Body: Because everyone's symptoms are different, the most effective approach is to treat what you're experiencing. If you're feeling lightheaded, try lying down or putting your feet up to help get blood flowing back to your heart.

Our Current Regiment

For his dysautonomia, our son, who is 12 years old and weighs about 100 lbs, follows a comprehensive and structured daily regimen. In both the morning and evening, he takes one tablet of D-Hist, a supplement that includes Quercetin (200 mg), Vitamin C (150 mg), Stinging Nettle (200 mg), Bromelain (50 mg), and a small amount of Sodium Chloride (25 mg). Additionally, he takes a magnesium complex that provides 250 mg of magnesium and 880 mg of sodium chloride. To help with his energy, he also takes Spirulina and Chlorella (Energybits).

In addition to this supplement plan, we are also taking him through the Levine Protocol, a specialized exercise program designed to address his exercise intolerance and gradually retrain his body to handle physical activity. This comprehensive approach is designed to address multiple facets of his condition by combining supplements with a structured exercise plan.

Disclaimer: The information shared here, including details about our son's regimen, is based on my professional experience as a medical professional. After extensive blood work, testing, and careful calculation, we have developed a protocol that has been effective for his specific symptoms and condition. This information is for educational purposes only. I am not your medical provider, and this is not medical advice. Before starting any new supplement or treatment, please consult with your own medical professional. They can ensure any new regimen is safe and appropriate for your individual health needs.