We know this diagnosis can feel overwhelming. You may be struggling to accept it. Unlike a diagnosis of an illness like appendicitis, in which patients tend to have consistent symptoms of a limited spectrum, patients with dysautonomia can experience a wide assortment of problems. Therefore, a wide assortment of treatments must be tested and tried with the aim of improving the overall health and ability of the patient to function. It’s a process, and it doesn’t happen overnight. Be persistent and patient with yourself as you take the next steps. Each patient’s journey is different, but there are some similar steps you can take as you move forward. Here’s what TDP recommends:
- Let us help you learn all you can about dysautonomia.
- Ask for help and take advantage of offers of support.
- Make sure you are seeing a provider who understands autonomic nervous system disorders.
- Determine with your doctor if you need further diagnostic testing.
- Learn how to prepare for your medical appointments.
- Create a symptom management plan with your physician
- Make use of the tools and information on this site
Study and learn all you can about dysautonomia.
Education is the number one treatment. Autonomic disorders are complex. No two patients look or present the same way. Learn what you can about dysautonomia even if it’s just one new thing each week. If brain-fog or mental clouding is an issue for you, take notes or enlist the help of a friend or family member who has offered to support you on this journey. Start with this article, Understanding Dysautonomia. It will guide you and provide links to numerous helpful articles in our Patient Education Center.
Check out our online videos for patients. A great video to start with is the Introduction to Autonomic Disorders course for patients led by Dr. Glen Cook.
Get a copy of The Dysautonomia Project book. The book is a fantastic tool as an introduction to dysautonomia. The book is written by patients and providers for patients and providers. The left side page in each chapter of the book is written for patients in an easy-to-understand format. The right side of the book is written for physicians and other healthcare providers. The book is designed to be used as a tool for patients to take to their healthcare providers to engage in a more meaningful discussion.
Ask for help and take advantage of offers of support.
Because autonomic nervous system (ANS) disorders are often invisible, people around you may not realize you need help. If you struggle with asking for help, you may have to leave your comfort zone. If you’re not used to accepting offers of help, you may need to start taking people up on those offers. This is not the time to try to go it alone. For many dysautonomia patients, it’s not even an option. If your day-to day life has changed, asking for help will be a key to moving forward. That may look like finding a friend or family member who will go to appointments with you and help take notes, ask questions, or fill out forms. Or you may need help with transportation, shopping, and cooking. If your symptoms are debilitating and you need help with activities of daily living, we encourage you to reach out.
Make sure you are seeing a provider who understands dysautonomia.
This is not the time to worry about offending your doctor or other health care provider. Currently physicians do not learn much about autonomic dysfunction in medical school. If your provider does not understand dysautonomia, but they’re willing to learn, then we highly recommend ordering a copy of The Dysautonomia Project book for your doctor and one for yourself. (Note: Each year between June 15th and July 15th we offer to send your health care provider a book for free.) The book is the definitive guide on ANS disorders to date. You can also share this website and a link to the Provider page. Part of our mission is to educate providers. We have several online video courses and resources for community-based health care providers. If your provider does not understand dysautonomia and does not have the time to learn in order to help you manage your treatment plan, it’s time to find another provider.
TDP has compiled an up-to-date list of providers who see patients with dysautonomia. Our Find a Provider database includes providers from across the United States. Although dysautonomia has no cure, this chronic illness can be managed if you persevere. It’s critical to find a provider that understands dysautonomia and will work with you as you try new treatments.
Determine with your provider if you need further diagnostic testing.
Not all ANS disorders are debilitating. Some patients have mild forms of dysautonomia. If you’re able to go and do things like most others, then you may not need further diagnostic testing. You may be able to work with your local provider to find the treatment plan that helps you improve symptoms.
However, if your symptoms are more disabling, further diagnostic testing might help you and your provider better understand the mechanisms and/or coexisting conditions that either cause or exacerbate symptoms. It’s not always possible to find the underlying cause but identifying coexisting conditions could lead to better treatment options that target your more complex case.
Learn how to prepare for medical appointments.
Create a symptom management plan with your provider.
It’s important to prepare for appointments, so you’re bringing information to the doctor that is meaningful and helps them create a treatment plan. This is not how most people approach going to the doctor. The typical patient sees the doctor when something is wrong. The doctor follows certain procedures, asks questions, orders tests, examines the patient, diagnoses, prescribes and treats, and sees them for a follow-up. Treating dysautonomia requires “flipping the clinic” and doing things differently.
Dysautonomia patients must be more informed and engaged in managing their health care with their doctor. Because dysautonomia often involves multiple symptoms and trying different treatment approaches, it’s the patient who needs to share details about how treatments are working and how their symptoms are improving or worsening. In this way, patients can work with their provider to find options that will help manage their dysautonomia. This enables providers to better support dysautonomia patients as they help chronic health problems.
Tracking current and new symptoms, making notes on how your body responds to treatments, and keeping a record of your tests, doctors notes, and prescriptions are ways you can take ownership of your health and partner with your provider. At first, this may sound and feel overwhelming, but it doesn’t have to be. Here are some tips and resources that may be helpful as you become your own advocate.
Your goal is to work with your provider to improve your symptoms. For some, that means having more good days than bad. This requires adjusting your management plan through patience and persistence over a long period of time. When you track your symptoms alongside treatments, you can share “science-based information” with your doctor about your symptoms and treatment options and adjust the plan accordingly.
Make use of the tools and information on this site
As you learn how to live with dysautonomia, there will be new research and treatment options. Don’t stop learning. TDP exists to bridge the gap between what the top autonomic specialists in the world know and what community providers and patients need to know. We’re committed to sharing accurate, science-based information and working with the American Autonomic Society (AAS) to make sure our message is scientifically valid, and it gets into the hands of those who need it most.
Autonomic Disorders Assessment for Diagnosed Patients
Take advantage of our Autonomic Disorders Assessment. This tool was designed with the patient in mind. The assessment sends an emailed report to you that can be printed or forwarded to your provider. This information may help you and your provider identify trends in your symptoms based on changes in your treatment plan.
Articles: Patient Education Center
Video Resources: Education Center for Autonomic Disorders
Links to share with your healthcare provider:
About The Dysautonomia Project book:
The Dysautonomia Project was first published in 2015. It was written by a patient and physicians for patients and physicians. It was the first the of its kind and has helped to bridge the gap between what autonomic specialists know and what patients and community-based providers need to know. It is our definitive guide on dysautonomia to date. We highly recommend taking the book to your physician and keeping a copy for yourself.
We do share the highlights of the book throughout the website and some of the chapters in our Patient Education Center, so you can start taking steps on your path toward hope. The book is comprehensive and compiles all the information in one place. When you’re ready to dive deeper into the content, you can take that step. In the meantime, let us help you learn the basics about dysautonomia right here on this site.
3 Responses
Where can I get this book
The book can be purchased directly through The Dysautonomia Project’s website, and is also on Amazon and Kindle.
I purchased this book. I have read it thoroughly. I think it is an EXTREMELY helpful tool for anyone who is diagnosed with dysautonomia or they or their doctor “thinks” they might have dysautonomia. The problem is STILL too many doctors do not know much IF ANYTHING about dysautonomia or even how to treat it. I would like to see you revise the book or add a new chapter on what happens when you get to the end of seeing various current specialists (internists, cardiologists, neurologists) through standard “health insurance” – but need further assistance from someone who has actually treated patients with the debilitating form of dysautonomia. Can you give more specifics on how you can reach out to centers of excellence and still have some sort of assistance in paying for a specialist when other local doctors say they “cannot treat” or “don’t know how to treat” OR even worse still believe the symptoms being experienced are just “in your head” and all you need to do is take antidepressants? That has been our recent experience with some doctors . I guess there isn’t too much emphasis paid to teaching about dysautonomia in medical school. Hopefully, one day soon that will change. PS. I use both https://www.thedysautonomiaproject.org and https://dysautonomiainternational.org – both are very helpful resources…!