Having dysautonomia means a lot of information, paperwork, and running around to doctors. 

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The easiest way to stay organized is to create Medical Binders. I recommend that you create a small Summary Binder that you take with you to your doctors, your school and, unfortunately for some, the Emergency Room (ER). For all the extensive articles, long term history, and contacts, you may want to keep a complete Master Binder for your total collection of records.

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You are legally entitled to ALL your test results, doctors notes, and everything related to your health, so don’t be afraid to politely ask for these records! I truthfully inform my physicians that because I have to travel to many specialists, they are not all in the same computer system, so I need copies of everything. I get printouts at the end of each appointment, or they are emailed or mailed to me. I always mention that this saves the physician time, because they will not have another office calling and requesting everything, as I will have it on hand.
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Here are some suggestions for getting organized so that you can get the most out of your appointments and ER visits.​

1. Get a small 3 ring binder, or even a large folder, and either buy or make simple dividers. Keep it clean looking and undecorated, so it has a credible and professional appearance. You don't want a giant binder full of papers decorated with your Spongebob sticker collection (or any others!) which might cause anyone to pre-judge you. This will be the smaller Summary Binder to take to appointments or the ER. ​Also buy a large binder to create your Master Binder, which can be kept at home and decorated to your taste - Spongebob stickers and all.
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2. In both your binders, create a section for each specialist: Cardiologist, Neurologist, Gastroenterologist, Physical Therapist, etc... Arrange your paperwork in reverse chronological order, putting your most recent or important records of test and office visit records first. Having your lab results and notes from each doctor is very useful, both for you to see and chart the trends in your health - and for your doctors to easily see how other specialists are testing and treating you. In the smaller summary binder, place most recent and relevant tests and notes. In the larger Master Binder, keep the remaining long term records. Many doctors, therapists, and hospitals do not use the same computer system for records, and some have no system at all, so it is important for you to have your ‘big picture” available at home for your reference and if a physician requests it.
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​3. Create a section in your Summary Binder with a current symptom and concern list, along with specific questions. I suggest including ALL of your concerns, not just the targeted ones for each specialist. Work off the same list for every doctor, so they can see the big picture. This will also keep paperwork to a minimum. For example, my ENT (Ears, Nose, and Throat) doctor first mentioned dysautonomia to me many years ago because I brought up all the whacky stuff that I was dealing with in my body in places other than my ears. He happened to be familiar with dysautonomia, and made the suggestion that I look it up; so - you never know!  Many doctors do fellowships at specialized hospitals like The Mayo Clinic or Vanderbilt, and may know something extra that will help, even if it is outside their specialty. Having your questions written down will help you stay on track during a sometimes rushed appointment, and not forget anything. Keep extra paper in this section to take notes during your visit.​

4. Create a section for medical journal articles in both binders. I suggest printing a few basic comprehensive articles related to your diagnosis, you can find links for a few to get you started below. This is instant credibility with your doctor and your school or workplace that you have done your homework.  It also provides them much needed research information and resources if they don't have them. We also provide printable guides and brochures on our website here.
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5. Have an "official diagnoses summary" with who, what, where, and when you were diagnosed. Also include any standing orders or instructions in case you end up in the ER. If you have a good specialist that knows you need IV fluids sometimes, they may be able to write or sign a standing order or recommendation for the ER doctors to follow.  This is especially handy if traveling as well.

 

6. Now that you have been diagnosed, you are hopefully going to meet many great individuals out there that share your issues and want to help you. I recommend a section in your Master Binder for all your key contacts. Here, list your doctors, your new POTS friends, and favorite resources. 

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*Don't forget a pen! Happy organizing!

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A few starter articles for your binder/folder (see our extensive LIBRARY for many more broken down by topic):

 

• The Postural Tachycardia Syndrome (POTS): Pathophysiology, Diagnosis & Management. (this in my opinion is by far the best synopsis of POTS for any unfamiliar doctor or ER) by Satish R Raj, MD MSCI, Indian Pacing Electrophysiol J. 2006 Apr-Jun; 6(2): 84–99.
• A review of postural orthostatic tachycardia syndrome. Carew S, Connor MO, Cooke J, Conway R, Sheehy C, Costelloe A, Lyons D.Europace (2009) 11 (1): 18-25.
• ​Dysautonomia: Perioperative Implications.  Mustafa, Hossam I. M.D., M.S.C.I.*; Fessel, Joshua P. M.D., Ph.D.†; Barwise, John M.D.‡; Shannon, John R. M.D.§; Raj, Satish R. M.D., M.S.C.I.‖; Diedrich, André M.D., Ph.D.#; Biaggioni, Italo M.D.**; Robertson, David M.D.Anesthesiology: January 2012 - Volume 116 - Issue 1 - p 205–215.
• Physiological phenomenology of neurally-mediated syncope with management implications.  Schroeder C, Tank J, Heusser K, Diedrich A, Luft FC, Jordan J., PLoS One. 2011;6(10):e26489. Epub 2011 Oct 25.
• ​GENERAL INFORMATION BROCHURE ON ORTHOSTATIC INTOLERANCE AND ITS TREATMENT. Rowe, Peter MD, Chronic Fatigue Clinic, Johns Hopkins Children’s Center, October 2011.

​FIND MORE JOURNAL ARTICLES HERE.

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Written by Claire Martin, president of Dysautonomia SOS.

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