I think I have POTS...now what?

Postural Orthostatic Tachycardia (POTS) is on the rise and popping up more in news reports and articles since the outbreak of the COVID-19 pandemic. Individuals identified as “long haulers” or those who suffer from lingering effects from COVID long after the usual recovery period are reporting symptoms such as chest pains, shortness of breath, sleeplessness, and abnormally fast heart rate. While POTS is not a new illness, the experiences of these “long haulers” is bringing more awareness to the disorder. This article is meant to serve as a guide for those who may have suspicions that they have POTS and provides some tips for getting diagnosed. It’s also intended for those who are newly diagnosed and may be struggling to adapt to a new lifestyle or for those who love an individual living with POTS.

What is POTS?

Postural Orthostatic Tachycardia (POTS) is a disruption of blood flow and circulation and is a form of dysautonomia, which is a dysfunction of the autonomic nervous system and the sympathetic nervous system.

Those who suffer with POTS live with a wide range of symptoms, with no two individuals experiencing the exact same symptoms. Those symptoms can be chest pain, low or high blood pressure, fast or slow heartbeat, dizziness or faintness upon standing. Due to POTS being a type of Dysautonomia, symptoms can also include body temperature dysregulation, gastrointestinal issues, and visual disturbances. While no exact root cause of POTS has been identified, it is believed the onset of POTS can follow a viral infection or trauma of any kind to the physical body.

Become your best advocate on the road to diagnosis and beyond

The road to a POTS diagnosis can be long and strenuous. It can take several years of documenting symptoms, medical visits, and testing before being formally diagnosed due to the nature of dysautonomia and POTS. These symptoms vary widely between individuals and can often mimic other ailments such as anxiety, anemia, several heart conditions, food sensitivities, and fibromyalgia. It’s not uncommon for health professionals to rule out other illnesses before exploring the possibility of a POTS diagnosis. Likewise, POTS and dysautonomia are widely misunderstood ailments and there is much misinformation among medical professionals and specialists. In the past, it’s been reported that an overwhelming majority of individuals with POTS are women. With the increase in cases caused by COVID-19, this demographic may shift, and it shouldn’t be assumed that men are exempt. Because of this misinformation, it is beneficial to keep a daily health log yourself that can give your health care provider a much more comprehensive look into your daily life. Consistently logging your daily blood pressure, heart rate when standing, walking, and sitting, and any symptoms that you experience that seem to be out of the ordinary (like chest pains, fainting spells, or pain) can often shorten the length of time between onset of symptoms and diagnosis.

Take control of your doctor’s appointments

When making your initial doctor’s appointment, make sure to let the appointment setter know that you will need a longer appointment of 45 minutes to an hour. POTS can be overwhelming for anyone, and the more time that the provider has planned to listen and review your health journal without the pressure of rushing to their next appointment, the better the likelihood that they may order the correct tests. Take a family member or friend with you that has also experienced your symptoms firsthand and can explain to the doctor from a third person perspective what your symptoms are like. Lastly, encourage your doctor to sit across from you and look at you while you are speaking. Many doctors like to type and order tests while simultaneously holding a conversation, which can lead to you not feeling heard as well as the potential to not hear you correctly.

Is this the right doctor for you?

We all like to think that doctors have all of the knowledge and training concerning any health issue; however, this is not always the case. Certain ailments and diseases are more common than others and, depending on the age of your provider and their schooling, they may not have heard about POTS at all. You can know if a doctor is knowledgeable and right for you if: the doctor is willing to explore your symptoms further either through testing or a referral to a specialist such as a cardiologist, electrophysiologist, or neurologist (after ruling out other health conditions, your provider may order the appropriate Table Tilt Test in a hospital environment. This test measures your blood pressure and heart rate in a prone position as well as a prolonged standing position. An increase in heart rate of 30 beats per minute or more within 10 minutes of standing in adults (40 BPMs in children and adolescents) could indicate an autonomic disfunction and result in a diagnosis of POTS. Blood pressure values do not need to be affected to receive a positive diagnosis), the doctor is willing to listen to your concerns and does not try to intimidate you or speak over you, the doctor does not brush off your concerns by saying that your symptoms would disappear if you were thinner/fatter/younger/less stressed/or less anxious. Don’t shy away from speaking up and letting the doctor know that he/she may not be the right fit for you if you feel uneasy or uncomfortable in any way during the appointment. It’s important to listen to your intuition and act accordingly. It’s also perfectly ok to end the appointment and leave at any time. Remember, this is about YOU and YOUR needs, not the other way around.

Build a Support Team

Help your family and friends understand POTS

Health professionals aren’t the only ones who struggle with understanding POTS. While you may have searched the entire internet and social media looking for answers prior to your diagnosis or directly following your diagnosis, your family may be as baffled as you were at first and struggling to make sense of what is happening with your health. POTS is an invisible illness and there’s often no strong outward indicators that you are ill or even disabled. Your family and friends may not be able to understand how you’ve gone from someone who can play sports or dance for hours to someone who can barely stand upright or shower for a few minutes. As symptoms arise, take time to communicate what you are experiencing. If you have connected with a support group on social media, invite your friends and family to also join the group so they can see the exchanges shared and ask questions themselves. This will empower them to educate themselves and gain the support they need.

Allow your family and friends space to process their own emotions

It’s also important to be aware of the emotional toll that POTS (and all chronic illnesses) have on the entire support system of friends and family. Just as deeply as the thoughts, feelings, and emotions surrounding your POTS diagnosis has affected you, it’s also affected those around you. It’s difficult to see the ones you love suffer and it’s equally painful to feel helpless to ease the suffering. Allowing those around you the time and space to process their own thoughts and feelings can open up meaningful conversations and deepen compassion and empathy.

Communicate your needs clearly

Learning to be assertive and communicate your needs to others is crucial when living with a chronic illness such as POTS. Whether it’s asking for ADA accommodations at work, approaching your health care provider when your symptoms worsen or your medication may need adjusting, or letting your family know that you need assistance with responsibilities or chores in the household, you hold the power to take control and structure your life in the way that fits you best.

Overcome Daily Obstacles

Plan Your Daily Routine aka What Routine?

POTS can be an extremely unpredictable illness with lots of variables from day to day. No two days will be the same, which makes planning ahead seem almost impossible. It’s also a normal occurrence to wake up feeling either wonderful or terrible and have that state change throughout the day in a matter of seconds, which can be frustrating. It’s perfectly fine to still make plans for the day and have something to look forward to, yet also be open to shifting your plans last minute if the need arises. Creating alternative plans or a Plan B (or C or D) can also help you avoid disappointment and self-judgement. Maintaining an open, growth mindset will lead to a sense of control and calm.

Accept and live a joyful life with POTS

Give yourself grace

Living with POTS means living with the vast array of daily emotions. It can easily feel like you’ve lost control of your body and that it’s no longer on your side. It’s important to remember that illness is not a punishment. Good people become ill and illness is sometimes a part of life. Chronic illness can also create detachment between the mind, body, and spirit. Showing yourself love, kindness, and self-care are all ways that you can give yourself grace and reintegrate all aspects of your being and lead a fulfilling life. Keep in mind that you are doing the best you can.

Live mindfully

One of the biggest lessons that POTS has taught me personally is to live mindfully and in the present. Whether you have a day, a few hours, or a few minutes of peace in your body and are feeling well, use that time wisely. Take a short walk, shower, exercise, sleep, eat a small nourishing meal, or enjoy quality time with someone for whom you care deeply… do anything that you aren’t able to do when your symptoms are at their peak.

POTS can be a debilitating, disabling, and life-changing chronic illness. The journey that the individual takes from onset of symptoms to diagnosis to living a full and meaningful life is a time of growth and adjustment. By advocating for yourself in the medical setting, building your support team, and learning to care for yourself and manage daily obstacles and expectations, you can release the fear and live a full and joyous life despite POTS.

If you or someone you love is struggling with POTS, personalized health and lifestyle coaching and resources are available at: https://chroincallyheroic.wixsite.com/chronicallyheroic

For more information about POTS, qualified healthcare providers and organizations, as well as ways in which you can become a POTS advocate, visit Dysautonomia International at: http://www.dysautonomiainternational.org/page.php?ID=34