Living with Dysautonomia
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Wellness for Dysautonomia Patients
Living with an autonomic disorder (dysautonomia) can be challenging. POTS (postural orthostatic tachycardia syndrome) is a type of autonomic disorder. The various symptoms of dysautonomia – along with the changes in their severity over time – make it difficult for patients to predict how well they will feel at any time and how to best plan daily life.
Medical testing and medications identify and correct the causes and consequences of the autonomic disorder. While these steps are crucial for improving a patient’s health and quality of life, they are not the only ways to help a patient feel better.
Feeling better can happen faster and last longer when wellness is brought into a patient’s life. Wellness can be defined as a “conscious, self-directed, and evolving process of achieving full potential.”
Health is a state of being. Wellness is the state of living a healthy lifestyle. Patients can have a more predictable and higher quality of life when both health and wellness are priorities.
There are many aspects to wellness:
- Medical and dental
- Psychological and emotional
- Behavioral and intellectual
- Occupational and financial
No factor stands alone, and improvement in one can improve wellness in others.
This guide helps detail ways to bolster wellness in many of these areas by giving you strategies for stress management. The suggestions here are specifically tailored to patients living with autonomic disorders, but can be especially helpful for family and friends. They are a crucial support network for the patient and often face stressors due to the disease as well.
Managing stress with dysautonomia
Stress management techniques are important for everyone, but especially if you are living with an autonomic disorder. Stressful appointments, completing day-to-day tasks that may not have given you trouble in the past, and trying to explain your illness to those around you can be overwhelming.
Common ways people use to manage stress – pursuing creative outlets, listening to music, or watching TV – can give you a much-needed distraction and temporarily take your mind off stressors.
The following strategies are known stress management techniques that, in addition to providing a distraction, may also directly improve symptoms of your disease and give you a greater sense of control and tranquility.
Yoga, a practice dating back thousands of years, can be extremely helpful for stress management. The core principles of yoga in all its forms focuses on finding inner peace and increasing awareness of oneself and others. There are many types of yoga, and research has shown it can have a positive impact on many patients’ lives, including those living with cancer, chronic pain, depression, and heart disease.
Choosing the right type of yoga for a patient with dysautonomia depends on patients’ prior level of experience and the types of symptoms they have. For example:
- Patients with POTS (orthostatic intolerance) have their blood pressure drop when standing up, become dizzy when changing positions, and feel worse in the heat. For them, yoga classes that minimize rapid movements and inversions, allow participants to tailor the session to their skill level, and keep the room temperature cool are best. Restorative yoga (with an emphasis on relaxation and healing, for patients with muscle tightness or chronic pain) or chair yoga (done from a sitting position, with a focus on the head and arms) are good choices.
- For patients living with chronic fatigue, a beginner's isometric yoga class can help engage muscles and build strength through movements tailored to an individual’s capabilities.
- When starting out with any type, choose programs that emphasize tension reduction, rather than active stretching or fitness.
Yoga studios are located across the country, and it is offered at many workout facilities and through some hospital systems as well. Free videos online through YouTube and through subscription sites (including Yoga International) are available:
- Restorative Yoga for POTS by Sleepy Santosha. Link: https://www.youtube.com/watch?v=CVMDHlVjJvA
- Yoga International – free 30-day trial for many types of online yoga videos (including restorative) Link: https://yogainternational.com/
- Open-access online research paper, “Development of a recumbent isometric yoga program for patients with severe chronic fatigue syndrome/myalgic encephalomyelitis: A pilot study to assess feasibility and efficacy” by Takakazu Oka, Hisako Wakita, and Keishin Kimura (2017) describes isometric poses used by chronic fatigue patients. Link: https://bpsmedicine.biomedcentral.com/articles/10.1186/s13030-017-0090-z
Like yoga, acupuncture has been in practice for thousands of years. Studies showing its benefit specifically in patients with dysautonomia have not yet been published. But acupuncture has been studied in patients who experience tension-type or migraine headaches, depression, and endocrine disorders (such as polycystic ovarian syndrome). These patients showed small but significant improvements in symptoms.
Acupuncture, through use of needles or electrical stimulation, is thought to affect peripheral nerves, creating signals that help re-wire the brain and modulate the pathways that control the release of cortisol and other hormones associated with stress.
Testimonials from dysautonomia patients are mixed. Some patients do well with acupuncture, but others do not feel a difference.
Massage therapy can be used to relax muscles, stretch joints, reduce heart rate, and promote blood and lymphatic flow from the limbs back to the heart.
Massage may be especially useful for dysautonomia patients who have known problems with circulation or experience chronic pain, joint pain, muscle spasms, or migraines. However, some patients may experience rebound muscle tightness or soreness, or may not tolerate lying down well.
A short initial session, such as a 30-45 minutes, can be best to test your response.
When you are scheduling this session, don’t choose the type of massage that has heated beds or stones (such as a geothermal massage). Ask for a type that uses a lighter touch, fewer oils or scents, and a cooler room (such as a Swedish massage or a powder massage) to avoid aggravating symptoms.
Patients with known connective tissue disease such as Ehlers-Danlos or Marfan’s, should select a massage type that emphasizes muscle relaxation rather than joint stretching, given the joint ligaments’ underlying laxity.
At the initial session, talk with the therapist about your:
- Known trigger points
- Other medical conditions
- Disposition toward orthostatic intolerance or dizziness while changing positions
Patients should especially be careful lying down and getting up from the table and hydrate well before and after the session.
One way to define mindfulness/meditation is “the ability to choose whether we want to be fully aware of our surroundings on many different levels, or focus on any of them at will.” Like other stress management techniques, mindfulness/meditation has many approaches,
New methods emphasize “mindfulness to go,” or ways of practicing mindfulness while completing everyday tasks. Mindfulness to go can be particularly well-suited to patients with chronic disease who have busy schedules and may not have time to set aside each day for meditation.
The ability to refocus attention in the moment helps patients who, as they try to cope with dysautonomia, face stressful situations. Mindfulness is not about blocking thoughts out. Rather it is about refocusing attention away from certain thoughts that aren’t productive to specific tasks.
For example, walking into a doctor’s appointment to receive test results, or driving to work to ask for a leave of absence, are examples of stressful situations that can cause the sympathetic nervous system to activate. To ease stress mindfulness promotes retraining your attention to focus on something else, such as counting breaths and steps, or concentrating only on the mechanics of your driving. Techniques can also help you avoid circulating negative thoughts in your mind long after those thoughts have stopped being new or productive.
Many talk therapists are trained in meditation or mindfulness techniques. Suggestions of a few books and apps that teach mindfulness and meditation include:
- Mindfulness To Go: How to Meditate When You’re On the Move by David Harp (book) - Excellent for patients who would like a reference guide, have time to read a short book and practice the exercises, but may not want to commit to a block of time every day specifically for meditation.
- Headspace® (app) – 10-minute guided meditation exercises that are geared toward users who are just starting out. The app can help track progress, and even pair with others to stay on track. Great for users who like accountability and routine.
- Calm® (app) – The app offers a variety of guided meditation exercises ranging in duration (3 to 25 minutes), as well as sleep stories, breathing exercises, and soothing sounds to help fall asleep. Great for users who also struggle with sleep hygiene.
Cognitive behavioral therapy (CBT)
Cognitive behavioral therapy, or CBT, can be paired with mindfulness. CBT is based on the idea that thoughts and responses regarding events, and not necessarily the events themselves, create negative moods. By identifying and adjusting inaccurate or distorted thoughts, moods can be changed for the better.
CBT can be particularly useful when dealing with chronic or recurring thoughts. Patients with dysautonomia, already trying to cope with symptoms, can be frustrated in reaching a diagnosis, then dealing with the extensive interaction with the healthcare system. Self-esteem, relationship problems, and defining one’s identity can be affected. Patterns of thoughts come up that can be harmful to psychological and physical health.
Dysautonomia is not a psychological illness. But psychological support strategies can help patients cope with symptoms and thoughts relating to dysautonomia.
Like mindfulness, many talk therapists are trained in CBT. Books that help walk patients through the steps of CBT include:
- The Feeling Good Handbook by Dr. David Burns
- Retrain Your Brain: Cognitive Behavioral Therapy in 7 Weeks: A Workbook for Managing Depression and Anxiety by Dr. Seth J. Gillihan
Eating right with dysautonomia
For people with dysautonomia, nutrition is critical to both wellness and health. Yet maintaining good nutrition can be difficult for patients.
Many patients suffer with nausea, constipation, and diarrhea due to the disease itself. These symptoms, as well as others like dizziness and headache, can get much worse when blood sugars are outside of a normal range, hydration is not optimal, or “trigger foods” are eaten.
When patients aren’t feeling well, part of the problem can be they haven’t eaten well. Feeling too ill to shop for or prepare nutritious food can lead to a vicious cycle.
One way to control this is to begin a food diary. Track the foods you eat, including the time, a description of the food, the portion size (focusing on grams of protein, carbs, sugars, or whatever component of the food you’d like to track), your mood, and your thoughts. Here’s a sample:
Some more tips to help you maintain good nutrition:
- Eat enough fruit and vegetables (about 5 servings per day – ½ a cup of cooked/chopped fruits/vegetables, or 1 cup of leafy greens count as a serving)
- Get enough protein (grams should equal ¼ to ½ your weight in pounds)
- Hydrate well (at least half of your weight in pounds in ounces of water or other non-caffeinated beverages). For example, if you weigh 170 pounds, drink 85 ounces daily, or 10-12 eight-ounce drinks.
- Try to correct any deficiencies to make sure you’re meeting your caloric and nutritional needs. Identify any trigger foods (gluten, dairy, corn, etc.) that leave you feeling unwell, and eliminate them while keeping the diary for at least 2 weeks (or 2 months, if you are going gluten-free). If you see improvement, continue to leave them out of your diet and inform your healthcare team – you may need formal allergy testing.
- Because patients with dysautonomia feel unwell unexpectedly, nutrition can suffer. Prepare for those times by making meals in the crockpot or meal-prepping in advance. Keep a ready supply of Tupperware meals in the freezer.
- Make meal prep an activity for the whole family, or invite a friend over to help. Having help during the good times and the bad can build social and nutritional wellness, and ultimately keep you in better health.
- Even if you feel ill, try to eat at least one home-cooked meal per day, and avoid microwave meals when possible.
- Consider using grocery delivery or curbside services, so you can skip the store but still have access to quality food. Or have someone come to the store with you to help with shopping, loading, and unloading groceries.
- Avoid consuming high quantities of sugary or sports drinks, as they can worsen nausea and diarrhea.
Making the most of your doctors’ appointments
Patients with dysautonomia often have a team of physicians managing their care (primary care, cardiology, neurology, gastroenterology, etc., depending on their symptoms). After undergoing extensive testing before being diagnosed, patients often have continuous follow-ups with multiple providers. This can create confusion and difficulty keeping medical records in order, particularly if healthcare providers do not share electronic records with each other.
Keep a medical binder
A personal medical history binder that you bring to appointments is a useful tool in keeping these visits organized.
- A binder should be well-organized and concise due to the limited time of doctors’ appointments. It should be no more than 20 pages and include the most recent after-visit summaries you receive from your appointments.
- Most summaries include medications, medical history, etc. and provide updated perspectives on symptoms that incorporate information from past summaries. Only the most recent summaries are necessary for your binder.
- Test results should be kept in a separate section and tabbed with the name of the test (such as Gastric Emptying Results, MRI, Complete Blood Count, etc.).
- If you are receiving serial tests, such as an annual complete blood count, keep records of each of these. Put all complete blood counts together, all metabolic panels together, etc., with the most recent on top.
- When you have an imaging test done, ask for a copy of the actual images on a CD (or whatever electronic format is best), in addition to the written report. If you have the images on a CD, keep it with your binder. Most providers like to look at the images themselves, and some may need to repeat a test if the original images cannot be obtained.
During and after your appointments
- Write out a list of concerns you wish to discuss before you arrive at your appointment, Share it with the physician at the start of the visit, so he or she can structure the visit to address as many as possible.
- Know who is responsible for managing which symptoms you experience, particularly if specialists are involved in your care. Bring up concerns most appropriate to the doctor you are seeing. For example, a gastroenterologist would not be the right doctor to address new-onset nerve pain.
- Remember to see your primary care physician annually and take care of any additional preventative health concerns (mammogram, Pap smear, bone density scan, chest X-ray, etc.). While it can be hard to remember these amid the many symptoms you may be currently facing, your future health is worth it.
- When following up with a provider, take care with using electronic message systems (like MyChart). Messages should be short – just one or two questions – and direct. If you need to write more or have a conversation with your provider, schedule a follow-up visit, phone call, e-visit, or virtual visit to properly address your concerns.
Getting enough sleep with dysautonomia
Proper sleep is important for feeling well-rested and focused throughout the day. Many dysautonomia patients have difficulty sleeping. Their physical symptoms, like racing heart rate, headache, and dizziness, combined with psychological stressors, like worry, anxiety, and guilt, get in the way of a restful night’s sleep.
Sleep hygiene can be improved through a number of techniques. While some patients initially think of using prescription sleep aids, it is best to first try behavioral modifications. Some sleeping pills have side effects that may worsen brain fog and other symptoms of autonomic disorders. Some, too, are habit-forming, making it extremely difficult to sleep without them.
As with your nutrition, begin by determining your baseline sleep habits. Start a sleep diary for two weeks, recording daily:
- Caffeine intake
- Alcohol consumption
- Computer/phone screen time use
- Time you went to bed
- Sleep time
- Wake-up time
- Number of times you woke up in the night and why
After two weeks, identify any patterns that emerge. Use the sleep tracker apps on your phone to evaluate your quality of sleep and how many times you wake up during the night.
Tips to optimize sleep patterns include:
- Limit caffeine as much as possible and avoid it altogether after 2 p.m.
- Exercise 20 to 30 minutes per day, but avoid it in the 4 hours before bed.
- Consider adding filters to your screens to filter out blue light that is designed to mimic the sun (f.lux is a great free app that can be used on laptops and some phones).
- Establish a bedtime routine – whether through reading, taking a bath, or drinking tea – to help your body physically and psychologically prepare for sleep.
- Make sure the bedroom is dark and cool.
- Place your phone face down. Turn it off while charging, or use functions like “Do Not Disturb” to filter out unnecessary phone calls and texts.
- Do not lie in bed for longer than 20 minutes if you find yourself unable to sleep. Get up and read a calming book or do a repetitive task (knitting, crocheting, or putting together a puzzle).
- Try to avoid TV, music, or other stimulations that may make you more awake. Return to bed when you feel tired and awake at the same time the next day.
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