Preparing for Your Appointment
Most people with invisible illnesses like postural orthostatic tachycardia syndrome have complex medical issues. Emphasizing to your physician that you are seeking a partner who will help you live your best life (and not necessarily find the magic cure), will help doctors feel that they'll be able to meet expectations and enjoy working with an "interesting" patient, rather than worry that they'll spend endless hours with an angry patient who is not fixable.
Convincing doctors to get on board with our complex "mess" of dysautonomia symptoms might sometimes require you to prepare a good pitch: a well prepared communication that is concise, friendly, mindful of their schedule, and gets the main points across. It may be helpful to bring charts to summarize complex data, a medical history or past test results. It may also be helpful to have a specific and realistic call to action in mind, such as asking for a desired test, a referral, a prescription, etc.
General Tips to Help You Prepare
Write an opening monologue that tells the doctor what brings you into their office today. Include current and most troublesome symptoms (even if it is not present that day), and describe how debilitating the illness is. Practice your monologue so that it comes out smoothly when your doctor what brings you in.
Prepare a list of questions that you want to ask the doctor. Write these questions down so that you don’t forget to ask them during the appointment. In general, people respond better to questions than to statements, and like their own ideas best. Let's use this to our advantage in working with our physician. Prepare a list of questions that accomplish the same thing. Here are some examples that you might use:
- What would be the harm in my trying this supplement (d-ribose, iron) or medication (Adderall, mestinon)? Listen to their opinion, and ask further questions if necessary.
- If you take anxiety/stress/depression away, what medical conditions might account for my symptoms? What tests would you run for these?
Create a summary of current diagnoses, symptoms, and medications. Symptoms can change over time, but having a current 1-2 page summary document of recent symptoms, intermittent symptoms, current medications and diagnoses can give your caregiver a snapshot of the health issues. If you have had significant past health problems or abnormalities, list those as well. What triggers make you worse? What helps to manage your symptoms? List what therapies, medications, supplements, etc. that you have tried and if they improved your symptoms. Sometimes physicians assume that we are seeking medications, when in fact we have tried meditation, counseling, exercise, physical therapy, acupuncture, etc. without any improvement in symptoms.
Chart your symptoms for the month before your doctor’s visit. Some doctors aren’t interested in this kind of chart, but the best doctors are glad to see the data that you can provide about when certain symptoms develop in an effort to prevent them. It is particularly helpful when trying to answer questions about frequency and severity of symptoms in the doctor’s office. These are some symptoms that we track – use this as a guide, but tailor it to your most common health problems like dizziness, fainting, or heart palpitations.
Print a copy of all test results to carry with you to the appointment. Most hospitals and doctor’s offices offer free electronic access to laboratory results online through MyChart. Print these lab results and put them in a three ring binder by type of test (iron versus complete blood count). Like many families, we were having testing done at different hospitals and clinics over time. If you have a hard copy, you can be sure that your doctor can see all of your testing regardless of where they practice. Some doctors will photocopy these and make them a part of your record in their office.
Consider an initial appointment to establish care. When getting a new primary care doctor, consider making an initial appointment to get acquainted with your doctor and to establish a friendly rapport, before digging in to specific medical issues.
Dress professionally on the day of your appointment to be taken seriously. This is more important for the caretaker (parent or spouse) than for the patient. Make a good impression on the doctor – they are in a position to help you, so be on your best behavior! Smile, be polite (yet firm), and compliment your doctor on what you liked about the appointment.
Feel free to get a second or third opinion. We saw nine doctors before we received the POTS diagnoses, and many doctors said things to us that did not feel right in my gut. You don’t have to return to a doctor who you don’t feel helped you. We left many appointments saying that we were one doctor closer to the one who could actually help my daughter!
Don't be afraid to schedule with multiple specialists at once. When my daughter got sick, many symptoms developed that appeared to be vastly different systems. I made the calls to infectious disease, physical medicine, and rheumatology to get appointments within the same week. With wait times, we ended up seeing a different specialist every two to three weeks. If you find that physician with the diagnosis that feels right, you can always cancel appointments with other specialists that you have already made. We saw nine doctors in the nine months it took her to get diagnosed, largely because I set up multiple appointments in a short time frame. Don't be afraid to spread your net and schedule with a number of specialists in the same time frame!
Maintain good relations even when issues arise. Even if you don't plan to go back to a particular physician, don't burn bridges as you leave. We left a physician that we had been seeing for nearly a year who had been difficult to work with and was not good with children (despite being a pediatric neurologist). While we had a few things we wanted to say, I'm so glad that we didn't. Six months after our last appointment, we were informed that insurance had denied payment for one of the blood tests run. You never know when you might need a letter for disability or insurance, so smile as you walk out the door.
Finding a Good Autonomic Physician
Here are a couple of resources to help you find a good autonomic physician who understands postural orthostatic tachycardia syndrome and other forms of dysautonomia in your region.
How to Find a Good Doctor gives excellent general advice for what to look for when you are choosing a new physician.
Brochures to Facilitate Discussion with your Physician
Some doctors know more than others about dysautonomia and POTS. Print each of these brochures and take them with you each time you visit a new doctor to increase awareness among the medical community.
If your doctor will only consider articles from the scientific literature, you can look through these pages to find an article that sounds close to your situation. All of these are FREE full journal articles that you can print and take with you or email to your physician.