How do I coordinate and organize my care with postural orthostatic tachycardia syndrome (POTS)?

  • Start a binder or folder containing your basic notes and testing results. Periodically review this binder to remove out-of-date data. As a rule, about 20-30 pages of pertinent medical data will help guide your POTS medical team most effectively
  • You will need a healthcare provider or primary care physician to go to for routine care and health wellness management. Your POTS specialist may ask you to see your healthcare provider periodically. Get copies of your medical visit notes from your healthcare provider — especially any additional testing results — to have in your record binder (see above)
  • If you are feeling very ill or something doesn’t feel right, you may need to go to the ER or Urgent Care immediately. If you call your POTS specialist or send a My Chart message (see below) you may be told to go to the ER or Urgent Care
  • Signing up for Cleveland Clinic’s My Chart will make your care more efficient. You can access test results and medical records, reach out to your medical provider, and schedule tests and appointments
    • When sending a My Chart message please re-read your message to make sure your note is clear and concise. A short, to-the-point message sent to your medical team will deliver the best results for you
    • When receiving a message from your medical team, please read very carefully to make sure you understand the message.
    • At times you should print the message if there is key information or new guidance regarding your care. The message may have information you need to remember and use in the future
  • Be sure to check this manual since it may have solutions that help you. The manual may also help you organize more effective questions to your medical team during an appointment and with phone calls and My Chart messages. We recommend you review this manual weekly in the first few months of your POTS diagnosis
  • Look into shared medical appointments for POTS. The Cleveland Clinic offers medical appointments for POTS patients where 8-15 patients come together for a 90-minute medical appointment. You can get education on your POTS and the group can work together to help troubleshoot problems
  • Be sure to follow up with your POTS specialist.

How do I cope emotionally with POTS?

  • Be open and honest with loved ones and support groups about your diagnosis of POTS. Talk about your fears, hopes, struggles, and challenges with the condition. Encourage the people who support you to read this manual to learn more about POTS
  • Get enough sleep and eat well to help manage stress.
  • Shared medical appointments and POTS support groups (either online or in person) will help reduce the feeling of being alone and different.
  • Be careful with social media. Be mindful of the accuracy of any particular website’s data. Some POTS patients find comfort in social media. For others, social media can cause unnecessary and excessive stress and worry
  • Be very cautious of quick solutions from non-medical sources and people. Quick solutions usually don’t help POTS and can even cause more emotional distress
  • Be aware that with many neurological diseases like POTS, patients can look well. Don’t be stressed if someone says “you don’t look sick” or “you look good.” Take this as a compliment that you still look good despite having a health condition
  • We recommend counseling to help you learn to cope with a chronic health condition. Counseling may help to control other co-existing mental health issues that may negatively influence POTS
  • Meditate or take even just a few minutes of a time-out to help reduce some of your POTS symptoms.
  • Emotions can have a significant influence on your daily life and health. Identifying them can be useful if you are talking with a counselor or POTS support group. Think if the following emotions are present in your thoughts:
    • FRUSTRATION: distress and annoyance, especially in the inability to change or achieve something
    • ANGER: feeling of displeasure and annoyance
    • GRIEF: deep sorrow over a loss
    • DISAPPOINTMENT: sadness and displeasure over failure or lack of fulfillment of one’s hopes, expectations, and goals
    • GUILT and SHAME: painful feeling of humiliation or distress from perceiving you have done something wrong
    • EMBARRASSMENT: feeling of shame and awkwardness
    • CATASTROPHIZE: a perception or feeling that something is worse than it really is
    • HOPE: Feeling of an expectation and desire for a positive thing to happen
    • TRUST: belief in the reliability, truth, accuracy, and ability of something, concept, or a person

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