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24 Things I Wish I Knew When I Was Diagnosed With Dysautonomia

When I was diagnosed with dysautonomia nearly seven years ago, I had no idea how to pronounce the word let alone understand its meaning. Thankfully I met someone early on with the same diagnosis. She answered various questions and calmed my fear. The best part of that connection was we became fast friends and today she is one of my closest allies.

October is Dysautonomia Awareness Month: a time to raise awareness and educate others about this condition. Listed below are 24 tips for dealing with dysautonomia I wish I had known immediately upon diagnosis. Perhaps these tips may help others dealing with this life-altering medical diagnosis.

1. First off, a definition of dysautonomia (pronounced dis-auto-no-mia) is necessary. Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the autonomic nervous system (ANS). The ANS controls such functions as heart rate, blood pressure, breathing, temperature regulation, pupil dilation and digestion. People with dysautonomia have varied symptoms which may include dizziness, lightheadedness, syncope (fainting), headaches, nausea, pain, unstable blood pressure and heart rate. Dysautonomia, as you can imagine, can change a person’s life as the body becomes somewhat unpredictable.

author in front of niagara falls
In front of Niagara Falls, lit up for Dysautonomia Awareness Month

2. Undergo a tilt table test (TTT) and other autonomic testing if it is available. A TTT (which helps diagnose dysautonomia) involves lying down on a hospital-like bed, strapped in so you cannot move your arms and legs, and then raised 70 degrees. Blood pressure and heart rate are monitored, and symptoms noted. Symptoms may include nausea, headache, increased heart rate, hanging blood pressure, flushing, hot or cold sensations and syncope. Those with dysautonomia typically have a difficult time standing still, as blood pools in our legs, eventually causing syncope or near syncope. The TTT prohibits us from compensating for this fact as we cannot move our legs, tighten muscles or walk. Prior to the test, ask your physician if you should go off medications (and how to do this) to ensure accurate results. While uncomfortable, the TTT is manageable.

3. Ask for a copy of the TTT results and the interpretation of results. Make sure the doctor interpreting results has a solid knowledge of dysautonomia.

4. There is currently no cure for dysautonomia. The goal is to manage symptoms and resume normal activities as much as possible.

5. Understand that some days will be more productive than others and at times the body will need rest.

6. Continue exercising as this helps keep us as strong as possible and may relieve pain. Riding a recumbent bike and swimming are often recommended. Even if you exercise only a few minutes at a time before resting, do it. Eventually your stamina should improve.

7. Construct a solid medical team. This group may include a dysautonomia specialist (cardiologist or neurologist). There are few dysautonomia specialists available. Seek information from other patients  to see who they recommend. Understand that the wait for a specialist may be long but it is worthwhile to be put on a waiting list. Be persistent; call occasionally to see where you fall on the list. Few neurologists and cardiologists are trained on the ANS. Don’t waste your time on someone who does not understand dysautonomia. Your medical team may also include a nutritionist, physical therapist, dentist, therapist, ophthalmologist, rheumatologist and allergist/immunologist.

8. If your primary care doctor does not know much about dysautonomia, see if he/she is willing to learn. If so, they can be a valuable member of your medical team. Otherwise seek help elsewhere.

9. When you receive medical bills, check to make sure they are accurate. Call the insurance company if you have questions or think a service should have been covered. If you are planning to see a doctor out-of-state, first receive pre-approval for out-of-network coverage. Your referring doctor can assist with this task.

buffalo city hall
Buffalo City Hall’s dome was also lit turquoise for dysautonomia.

10. Make sure referrals are up-to-date so you are medically covered.

11. Purchase a binder and sort out medical records by services. Keep a paper trail for your information and in case you may need to apply for disability. Ask each specialist for written notes of your visits. The primary care doctor often receives these reports which he/she can print for your files.

12. Managing chronic conditions can feel like a full-time job. Make sure to take your vitamins and medicines on time daily. Take care of your physical as well as emotional health. Do things which give you pleasure. In my case I have found the following helpful: writing, listening to music, coloring rocks, hanging with my puppies, praying, spending time with my family and friends, online support groups and meditating.

13. Drink fluids. I find water, Normalyte, Nuun tablets and Powerade Zero most helpful. Any fluid loss – vomiting, diarrhea, sweating – can shift our blood pressure and heart rate.

14. Help others. If you belong to an online support group and a newly diagnosed person asks questions, try to provide information and support. The early stages of dysautonomia are confusing and frightening; support from others is helpful.

15. Don’t constantly monitor changing blood pressure and heart rate. Early on I charted these numbers for my doctor in hopes of improving treatment. Now I rarely check.

16. Keep educating yourself about dysautonomia treatment and ask your doctor what can be done. It may take several trials of medications before the right combination is found. You are the best resource for your doctor; note what makes you feel better/worse and report such information. Be aware that a dosage change of a medicine you are accustomed to may cause adverse reactions. Monitor yourself closely.

17. Find information from respectable sites. Dysautonomia International is a non-profit organization which advocates and supports patients, provides information and awards research grants to study dysautonomia.

group of dysautonomia advocates
Niagara Falls was lit up turquoise on October 1 to raise awareness for dysautonomia. Supporters of this cause gathered for dinner and fun.

18. Find a solid support system. This may include family, friends and others dealing with your condition. The internet has online support groups that may be of help. Find one that has moderators, rules and fits your needs. A social worker or mental health counselor may also be helpful to assist in dealing with your changing body, emotions and needs.

19. Salt consumption helps us to absorb fluids better as our bodies do not do this well. Some salty snacks include nuts, canned soups, deli meats, bacon, Cheetos, pretzels and peanut butter. Protein and small meals may also be of help.

20. Find joy; do things which make you happy and notice your blessings. Even though our lives are challenged, there can still be joy.

21. Understand that energy can disappear rather quickly. When we choose to do things that are enjoyable, we may experience increased symptoms later. I think it is worth it to live, despite this illness.

22. Try letting go of fear. Sure our symptoms can be frightening, but we typically do not die from dysautonomia.

23. Give yourself grace. This is a difficult illness to handle. Forgive yourself if you make mistakes, get angry and sad.

24. Persevere.

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