Dysautonomia

Comprehensive

Caring for Dysautonomia: A Holistic Approach

Dysautonomia hit me unexpectedly as part of my Long COVID journey, like many others. At first, I didn’t understand why I was constantly feeling dizzy, my heart racing out of nowhere, or why simple tasks left me feeling faint. Living as a Black woman with chronic illness, I faced delays in diagnosis and treatment because many healthcare providers didn’t take my symptoms seriously. This guide is designed to help others who may be facing the same challenges, especially those from BIPOC communities where access to culturally competent care is limited. Dysautonomia, which affects the autonomic nervous system, can cause a range of symptoms that interfere with daily life. Here, we offer practical strategies and tips to help you manage your care.

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Symptom Tracking

Tracking your symptoms is crucial for understanding how your body reacts to different triggers. Keep a detailed journal noting your heart rate, blood pressure, episodes of dizziness or fainting, and how your body reacts to changes in posture, temperature, or stress. This will help you and your healthcare provider recognize patterns and adjust your treatment plan accordingly.

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Monitoring Heart Rate and Blood Pressure

For individuals with Dysautonomia, fluctuations in heart rate and blood pressure are often key indicators of symptoms, particularly in conditions like POTS (Postural Orthostatic Tachycardia Syndrome). Regular monitoring with a pulse oximeter and blood pressure cuff is critical for tracking how your body responds to changes in posture, stress, and environmental factors. Here's how to effectively monitor and document your vitals:

Using a Pulse Oximeter:

A pulse oximeter is a small device that clips onto your finger and measures both your heart rate and oxygen saturation levels. Here’s how to use it:

1. Sit or Lie Down: Rest for about 5 minutes in a seated or lying position to establish a baseline heart rate.

2. Take a Reading: Place the pulse oximeter on your finger and wait for a steady reading. Write down the heart rate and oxygen saturation levels.

3. Monitor Changes: Repeat the process when you stand up, noting any significant increases in heart rate (an increase of 30 bpm or more upon standing may indicate POTS). Take readings multiple times a day to track how your heart rate fluctuates.

Using a Blood Pressure Cuff:

A blood pressure cuff can help you track how your blood pressure shifts between sitting, standing, or lying down—common areas of concern for people with Dysautonomia.

1. Sit for 5 Minutes: Before measuring, rest in a seated position for 5 minutes. Keep your arm at heart level.

2. Measure Blood Pressure: Apply the cuff and take the first reading while seated. Write down your systolic and diastolic numbers.

3. Stand and Measure Again: After standing for a minute, take another blood pressure reading to check for any sudden drops or rises. A significant drop in blood pressure upon standing (e.g., a 20-point systolic drop) is a red flag for Orthostatic Hypotension.

4. Document the Fluctuations: Repeat these readings at different times of the day or during symptoms to understand how your blood pressure changes throughout the day.

Documenting Symptoms: Poor Man’s Tilt Table Test

The Poor Man’s Tilt Table Test is an at-home method to simulate the diagnostic tilt table test used by doctors. This can help you document your symptoms, especially during a flare, and provide evidence to expedite diagnosis or adjust prescribed care. Here's how to perform and film the test to show your provider:

1. Prepare Your Devices:

   • Have a pulse oximeter and blood pressure cuff ready.

   • Use a smartphone or camera to record the process. Ensure the camera can capture both you and the readings on your devices.

2. Establish a Baseline:

   • Lie down flat on your back for at least 5-10 minutes. Measure your heart rate and blood pressure while lying down. Record these values in your journal and on video, noting the time for documentation purposes.

3. Stand Up and Monitor:

   • After recording your baseline vitals, stand up quickly and remain standing for at least 10 minutes. You’ll want to take readings at 1 minute, 3 minutes, 5 minutes, and 10 minutes to observe how your vitals change. Note any dizziness, lightheadedness, rapid heart rate, or nausea.

4. Capture Key Symptoms:

   • Keep the camera focused on both yourself and the readings on your pulse oximeter and blood pressure cuff. Make sure the device readings are visible so your provider can see the changes in real-time. Record how your heart rate rises or blood pressure drops when you stand.

5. Symptom Documentation:

   • During the test, speak about your symptoms: explain how you feel when your heart rate spikes, if you feel faint, or if you’re experiencing any other classic Dysautonomia symptoms like sweating or blurred vision. This qualitative documentation, along with the quantitative data, will help your provider understand the full scope of your condition.

Why This Matters:

Many patients, especially women and BIPOC individuals, experience delays in diagnosis due to healthcare providers dismissing or misinterpreting symptoms. Filming the Poor Man’s Tilt Table Test allows you to clearly show the physical effects of Dysautonomia, particularly during a flare. Having this documented evidence can help shorten the time to diagnosis, ensure you receive appropriate prescribed care, and advocate for yourself during medical appointments.

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Diet and Hydration

For many people with Dysautonomia, staying hydrated and increasing salt intake are key components of managing symptoms. Salt helps your body retain fluids, which can improve blood volume and prevent dizziness or fainting. Electrolyte supplements can also be helpful. Work with a dietitian to develop a diet plan that meets your body’s specific needs, especially if you also face other chronic conditions like POTS (Postural Orthostatic Tachycardia Syndrome). Remember, dietary needs are not one-size-fits-all, and finding the right balance is essential to minimizing flare-ups.

Medication Management

Managing Dysautonomia often requires a combination of medications. Below are common treatments:

• Fludrocortisone: A mineralocorticoid that helps retain salt and increase blood volume to reduce dizziness and fainting.

• Midodrine: A vasoconstrictor that raises blood pressure to prevent fainting episodes.

• Beta-Blockers: These medications (e.g., Propranolol or Metoprolol) help regulate heart rate, particularly in patients with POTS.

• Ivabradine: Slows heart rate without affecting blood pressure, often used for POTS management.

• Salt Tablets or Electrolyte Supplements: Maintain fluid balance and prevent dizziness.

• Compression Garments: Compression socks or abdominal binders help improve blood flow and reduce symptoms like lightheadedness.

Each person’s treatment plan may differ, so it’s essential to collaborate with a healthcare provider who understands Dysautonomia. 

Alternative Therapies for Dysautonomia

While medication is often necessary for managing Dysautonomia, some patients find that alternative therapies can complement their treatment plan and provide additional symptom relief. Below are a few alternative therapies that may be helpful:

• Acupuncture: Some Dysautonomia patients report improvements in blood circulation and relief from pain or discomfort after acupuncture sessions. This ancient practice may help balance the autonomic nervous system, though results can vary.

• Mindfulness and Meditation: Stress exacerbates Dysautonomia symptoms, and mindfulness practices like meditation, deep breathing exercises, and progressive muscle relaxation can help manage stress and improve emotional well-being.

• Yoga and Gentle Stretching: Yoga, particularly poses that are done lying down or seated, can help improve circulation and reduce stress without overexerting the body. Poses that promote grounding and relaxation are especially beneficial for Dysautonomia patients who struggle with blood pressure and heart rate fluctuations.

• Chiropractic Care: Some individuals with Dysautonomia report relief from certain symptoms after chiropractic adjustments, though it’s important to ensure your chiropractor understands Dysautonomia and its effects on the body.

• Massage Therapy: Gentle massage can help improve blood flow and reduce muscle tension, both of which may alleviate Dysautonomia symptoms. Be cautious, though, as deep tissue massage can sometimes exacerbate symptoms, so it’s essential to communicate your needs to the therapist.

Physical Adjustments

Physical modifications can significantly improve quality of life with Dysautonomia. Compression garments like socks or waistbands can help increase circulation and prevent blood from pooling in your lower extremities, which reduces dizziness and fainting. Elevating your legs when sitting or lying down, as well as making slow transitions from sitting to standing, can help prevent sudden blood pressure drops.

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Environmental Controls

The autonomic nervous system is sensitive to changes in temperature and environmental factors. For BIPOC patients, managing environmental triggers can be particularly challenging in urban areas or communities with less access to green spaces and clean air. Wearing loose, breathable clothing, using fans, or air conditioning can help regulate body temperature. Monitoring weather-related air quality and temperature can also reduce symptom severity.

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Stress Reduction

Stress often exacerbates Dysautonomia, and managing mental health is just as important as physical care. Tools like mindfulness, yoga, and therapy can help maintain emotional balance. Women and BIPOC individuals, in particular, may face additional stressors related to systemic inequities, which makes stress management even more vital. Culturally competent care can offer support and resources tailored to these unique stressors.

Culturally Competent Care and Symptom Tracking in BIPOC Communities

For those with darker skin tones, tracking symptoms like flushing or skin color changes can be difficult, as these signs often manifest differently than they do on lighter skin. Symptoms like flushing or poor blood circulation may not present as redness but as a darkening or purpling of the skin. Feeling for temperature changes (cold or clammy skin) and noting sensations like numbness or tingling can be just as important as visible signs.

Culturally competent care is essential for equitable treatment, especially in communities that often face delays in diagnosis. Many BIPOC patients report their symptoms being dismissed or misinterpreted due to a lack of awareness by healthcare providers. Ensuring your doctor understands how Dysautonomia presents in people of color, and advocating for care that addresses these differences, can make a significant impact on treatment outcomes.

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Resources 

Here are a few websites that offer information and support for those living with Dysautonomia:

• Dysautonomia International: A nonprofit dedicated to raising awareness and advancing research for Dysautonomia. They offer patient resources, clinical trial information, and a directory of Dysautonomia specialists.

• The Dysautonomia Project: Provides education and resources for patients, caregivers, and medical professionals on various forms of Dysautonomia.

• Standing Up to POTS: A POTS-specific resource offering comprehensive information for patients and families. It includes research, blogs, and support networks.

• Dysautonomia Youth Network of America: Focuses on supporting youth and families living with Dysautonomia, providing educational tools, advocacy resources, and social connection opportunities.

Dysautonomia Facebook Groups

Connecting with others who share similar experiences is key to building a support system. Here are a few Facebook groups that offer community, advice, and support for people living with Dysautonomia:

• Dysautonomia International Support Group: A large and active group managed by Dysautonomia International where patients, caregivers, and healthcare providers exchange information and support.

• Living with Dysautonomia: A community space for people living with Dysautonomia to share their stories, get advice, and learn about new treatments or coping strategies.

• POTS & Dysautonomia Support Group: Specifically focused on POTS and related Dysautonomia disorders, this group is a supportive space for those dealing with autonomic nervous system challenges.

Advocacy and Community

Building a support system of others living with Dysautonomia or chronic illness can provide emotional and practical support. For those in BIPOC spaces, finding or creating groups that focus on shared experiences can foster a sense of belonging and understanding. Advocacy within these communities is also vital, as the disparities in healthcare often leave BIPOC patients without adequate resources or representation in clinical settings.

Remember: Each person’s experience with Dysautonomia is different. Through self-advocacy, informed care, and cultural competence, you can better manage your symptoms and improve your overall well-being. Although the path to treatment may be difficult, especially within marginalized communities, creating a strong care network and staying proactive can make all the difference.

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Disclaimer

The information provided in this guide is intended for educational purposes only and should not be considered medical advice. Always consult with a qualified healthcare professional before starting or changing any treatment plan. Dysautonomia affects individuals differently, and treatments must be tailored to each person’s unique needs. This guide does not replace professional diagnosis or treatment, and it is essential to work closely with a healthcare provider familiar with Dysautonomia. Additionally, this guide emphasizes the importance of culturally competent care, but experiences may vary based on individual circumstances and access to medical resources.