tips: living with dysautonomia

Here are  a few tips (which I will be adding to progressively) that I have found to be helpful in living with Dysautonomia (and can even apply to other chronic illnesses):

DE-STRESS YOUR LIFE! I can’t stress that enough! Not only does stress increase the severity of all your symptoms, but it can further make your condition worse and prevent you from feeling better faster. Of course, life is full of stress and there’s no way to avoid it completely but there are some things you can do to help.

• Music, for me, is a huge stress-reliever. Calming, quiet, or inspirational music played throughout your room or house can increase a calm atmosphere.
• Lavender-scented candles or oils are great, too, because Lavender has aromatherapy properties that decrease stress.
• LAUGH! — Talk to a funny friend, read a funny book, watch a comedy, be around kids, etc. Laughing no only decreases stress but encourages healing in your body.
• Most importantly, surround yourself with positive people that actually care about you, respect your illness, and want to help you feel better. This makes a huge difference.

HEALTHY EATING! Another HUGE factor that promotes healing, well-being, and can even be curative in chronic diseases is a healthy diet, full of whole, raw, natural foods.

• Lots of lean protein, fiber, fruits, and vegetables.
• Stay away from refined sugars and white flours, caffeine, and added chemicals and preservatives.
• Find out if you have any food allergies or intolerances. A food allergy is much different than an intolerance. Most doctors will look over intolerances, so I highly suggest seeing a Registered Dietitian or Naturopathic doctor to assist you in this process. It’s amazing how many food intolerances people have that they don’t even realize, and can even be a major contributing factor to their symptoms.
• For most people with Dysautonomia, a high sodium diet is recommended along with extra fluid intake to maintain or increase blood volume and blood pressure. Dr. Blair Grubb, a leading specialist in Dysautonomia, recommends 2-4grams of salt per day (although I tend to eat more), and 2-3 liters of water per day.
• Also, the healthiest way to spread out your eating is by 6 small meals a day, instead of 3 large meals. This helps blood pressure to stay up by controlling excess blood flow to the abdomen to digest food. It’s also a good way to maintain blood sugar levels for those of us with hypoglycemia.

SLEEP! Much easier said than done for most Dysautonomia patients. Sleep and rest are extremely important when you have a chronic illness.

• According to Dr. Jacob Teitelbaum, sleep is one of the first aspects of treatment he looks at improving with his chronic fatigue and chronic pain patients.
• Work with your doctor on how to better improve your sleep habits (or sleep hygiene) and make sure you’re getting at least 8-9 hours of QUALITY sleep per night.
• Also, take breaks and rests BEFORE you feel tired. Listen to your body.

EXERCISE — another seemingly impossible task for those of us with Dysautonomia. But it’s very important. Exercise helps your mental well-being by producing powerful endorphins, it helps you sleep better at night, and has proven to help re-balance the autonomic nervous system.

• If you are extremely ill or bed-ridden, start with some simple stretching.
• If you have good health insurance, you can even try to get some physical therapy.
• For POTS patients, exercise that is done in a sitting or laying position (such as stationary biking or rowing) is most recommended.
• Walking is another beneficial form of exercise if you can tolerate it.
• START SLOW and SLOWLY work your way up. You may need to take a day or two off in-between “work-outs” when starting out.
• Talk to your doctor, and again — listen to your body. You don’t want to over-do-it and cause yourself a relapse, or do too little and not get any stronger.

HYDRATE, HYDRATE, HYDRATE!! Drink, drink, drink!

• Water is best.
• Sports beverages like Powerade and Gatorade are good too (in moderation) since they have sodium and other electrolytes.
• I personally make my own “hydration” beverage which consists of 3 parts water, 1 part natural juice (usually from orange, pomegranate, or cranberry), 1 teaspoon salt, and a little lime. I usually drink 1 liter of this “re-hydration beverage” a day, plus plain water.

SALT — back to the salt thing — salt is usually recomended for Dysautonomia patients that have Orthostatic Intolerance, POTS, or Neurocardiogenic Syncope.

• Liberally salt your foods (as long as your doctor OKs it)
• V-8 juices are another great source of sodium (and other healthy things!), as are sports drinks. But be careful of the high-sugar content in many sports drinks and opt for the low-sugar or zero-calorie versions instead.
• I would NOT recommend taking salt tablets because they cause most of the salt to stay in your abdomen and actually dehydrate you.
• Salt can be added to most foods. Put it on your meats, grains, vegetables, and even fruits — like pears, green apples, and oranges.

SUPPLEMENTS. Every person is different so certain supplements may or may not be right with you. Talk to your Doctor or an Herbalist or Naturopath to figure out which supplements are right for you.

• For most Dysautonomia patients taking Magnesium, Calcium, and a B-Complex (for nerve health, bone and muscle health, and energy) Vitamin C and Zinc (for immune system function),  Iron (for those of us that are anemic), and Probiotics (such as Acidophilus, or other healthy bacteria that improve the function of the digestive system) are recommended.
• When buying supplements, make sure they are of high quality and trusted brand since most supplements are not required to follow FDA regulations.

SUPPORT GROUPS. They are great ways to stay emotionally stable and find comfort in knowing you are not alone in this struggle. I have been blessed to have met some wonderful friends who have the same struggles, and they are just as beneficial to me as any medical treatment.

• Meet people in your area with the same conditions through dinet.org.
• Help organizations within your local religious groups
• Research support groups online

Take life at your OWN pace. If you were diagnosed after having lived a “normal” life, it can seem like your life is so slow now. You may feel pressured to keep up with the fast-pace of the world around us, but don’t be. No one is pressuring you.

• Set your OWN expectations and realistic goals. When you achieve them, you’ll feel better about yourself and your life than if you try to live like you used to, even though you want to.
• Having Dysautonomia, and any other chronic disease, required many major lifestyle changes. You have to find ways to work around them so you don’t get down and depressed.
• Find new hobbies that are not physically exhausting, like reading, art, journalism, music, etc. Spend time with your closest family members and friends in a relaxed environment — have people over to watch a movie, or play games sitting down. Even good conversation is a beneficial way to pass the time.
• Don’t try to please everyone around you by pushing yourself too far or hiding how you really feel. You’re not doing yourself any good. Don’t be embarrassed or ashamed! This illness does NOT define you. You are still who you are before, and the people that truly care about you will want to be a part of your life however they can.
• Count your blessings, and live them to the fullest. 🙂

Find a GOOD, SMART, PATIENT, KIND, and QUALIFIED doctor!! This is so important!

• I would highly recommend seeing a specialist in Dysautonomia above anything else. You can find a physicians list for specialists in your area at dinet.org.
• If you live in the mid-west, contact me and I can refer you to some doctors that can help.
• Having an open, trusted patient-doctor relationship is critical when you have a chronic illness. Make sure you can communicate freely with your doctor and that they take you seriously, and are sympathetic towards your condition.
• Be assertive. Dysautonomia is rare and often misdiagnosed. Don’t get angry and bitter if the first few doctors you see don’t know much about it. That’s normal. And it’s not their fault. Do your research, and if you feel you aren’t getting the medical attention you deserve, tell your doctor in a respectful way, or find another one.

Schedule your activities carefully.

• It’s easier to do something, take a break for a while, and then do something else.
• For example: you may not be able to plan lunch with a friend the same day you need to shower or do laundry. Spread out your activities and make sure to have plenty of time to rest before and after the most important ones.
• Set your priorities on the things that HAVE to get done first.
• I usually plan something one day, and then not much of anything the next, giving myself plenty of time to rest in-between the things I have to do.
• This is such a delicate balance, and it takes time to figure out your body — when you can push, and when you need to stop. I don’t think I’ve even figured it out completely. Don’t get discouraged. Just keep trying, and keep fighting.
• Don’t feel bad or guilty if you have to cancel on people for the millionth time. If they truly care about you, they’ll understand.

THE POWER OF A POSITIVE ATTITUDE. What you speak to and about yourself is powerful. The more you think of the negative and talk bad things to yourself, the worse you will feel, and the worse everything will seem. It’s a vicious cycle, and one that is hard to break, but it WILL be detrimental t0 you if you don’t learn to be positive about things as much as you can.

• Take note of the little things in life.
• Be thankful for what you CAN do and what you DO have, not what you can’t or don’t.
• Remember, someone is always much worse off than you.
• It’s natural to hate the world, your life, and ask the famous question “why me?!”. I still do on bad days. But I can tell you from personal experience that positive thinking goes a LONG way.
• “A cheerful heart is good medicine.”
• The mind and body are very much connected and I promise that if you do your best to stay happy and optimistic, you WILL feel better physically, too.

HAVE FAITH! Keep fighting.