​So, you were just told you have a form of

dysautonomia. What now?

​

The following tips and links were compiled from patients, caregivers, families, and professionals. We hope they help direct you to resources, and ways to understand your diagnosis more.

​

​THE TOP TEN LIST:

1. Find a doctor who knows about dysautonomia. If you were not diagnosed by an autonomic specialist (a physician who specializes in dysautonomia), find one ASAP. Find a list of regional physician's HERE, and the International Physician listing for the American Autonomic Society is HERE. Make sure they have tested you for underlying causes of dysautonomia (especially POTS), and ruled out serious conditions that can mimic symptoms.

 

2. Connect with other patients. You are not alone! It may feel that way, but there are millions of us out there. The Dysautonomia SOS online support group and the DINET Forum are good ways to start, as they are monitored. No bullying, wacky medical advise, or offensive material is on these groups. We also have a Mentoring Program that you can register for, and be connected with a more experienced patient to help guide you. 

​

3. Get educated about your condition. Find easy to understand, medically reviewed, credible information with links to the many types of dysautonomia HERE. Be careful where you get your information, there is a lot of mythical and inaccurate info on the internet. That's part of why we, Dysautonomia SOS, were founded!

​

4. Learn your "new health normal". Many of the symptoms of dysautonomia can mimic things like heart attacks and strokes, or involve fainting. Ask your doctor when you should go to the Emergency Room (ER) or call 911 to seek treatment. Ask for specific vital numbers that are cause for concern. Even ask for a written statement from your doctor that you can bring with you in case you have to go to the ER, because many are not familiar with dysautonomia. They can include your specific treatments (IV fluids, for example), and a detailed list of your specific health concerns, as well as contact info or resources.

​It often is hard to tell what is an emergency, and what is a part of daily life for many of us. This can result in not taking things seriously enough and possibly getting hurt, or ending up in the ER unnecessarily (see number 5).

​

5. Monitor your vital signs and symptoms at home. Keeping track of things like blood pressure and heart rate can help you find patterns in your health, and provide your doctor with valuable information. Keep a journal, a log, or find a free app on your smartphone to help. This will help you learn your "new health normal". For example, it may be "normal" for your heart rate to be 140 at certain times of the month. If you have had a thorough evaluation by your doctor, logged your average rates, and know that this is not an emergency, it is a lot less scary.

We created a simple POTS Symptom Tracker spreadsheet that is appropriate to print and share with your doctor. It applies to many types of dysautonomia besides POTS as well.

​

6. Learn about non-drug treatments and easy things you can do that can help your dysautonomia. Links are included below. Everything from lifestyle changes, not going bonkers, to staying organized with your medical records are all important and can help improve your quality of life. This will be a growing list as we add more articles!

• Increasing Your Salt and Fluid Intake
• ​Compression Stockings
• ​Creating a Medical Binder
• Personal Care and Mornings
• Staying Sane With Chronic Illness

​

​7. Find resources for disability, employment, and education opportunities. We have compiled a list of links to reliable sources to help you apply for disability, find legitimate work from home employment, and further your education.   

​

 

8. Seek help for your mental peace of mind if you need it. Having a chronic, often debilitating, unknown illness is life changing! It is also stressful, scary, and can be downright depressing, especially at first. There is no shame and nothing wrong with seeking out the help of a psychologist and/or psychiatrist who deals with chronic illness. This does not mean your dysautonomia is caused by anxiety (as many are told), it means the opposite. HERE is an amazing article written for medical professionals that you can print out if needed that discusses this in depth. 

 

9. Understand that dysautonomia is very unpredictable, misunderstood, and unknown by most people. Understanding that you will have good days and bad days, even good hours, and bad hours is one of the keys to overcoming the fear of this condition. Many patients call it "the crash" when going from functioning fairly well, to all of a sudden needing to be flat and deal with an onslaught of symptoms. It can happen suddenly, or come on gradually. Symptoms can change from minute to minute. Learning to stay calm while this happens, and what your "new normal" is, can help tremendously. Also knowing and being understanding of people not having a clue about dysautonomia will make life easier. Did you know what dysautonomia was before you were diagnosed? Most of us did not, unless it runs in the family. Get used to answering questions, and people (including doctors) not "getting it," because you may not look sick at all. Being educated and able to tell people about what you go through helps, such as reading and sharing The Spoon Theory. 

 

10. Be your own advocate, and NEVER GIVE UP! You are your own best advocate. You know your body. If a physician is not listening to you, or you feel you are not receiving the proper care, attention, and treatment, find a new one! You are a paying customer, there is nothing wrong with switching doctors or pushing for treatments and tests you want performed. It is easy to become discouraged, but please remember that things will get better, even if that means that by learning more and being more at peace with your condition, you feel better mentally. Keep pushing for answers, but also try to enjoy your life where you are at, in whatever level of functioning that may be, and find balance in the process. Never give up hope that tomorrow will be better - and if you have a good day - enjoy it! 

​

Written by Claire Martin in conjunction with Linda Burgess, and based on questions posed to our members. Want to add any tips? Email us!