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Living With Dysautonomia: Tips for Survival

Michelle Spain, M.Ed., devoted special educator for over a decade, experienced a life-altering illness leading to her own disability.

living-with-dysautonomia-tips-for-survival

Wreaking Havoc on the Body

It’s been over 10 years since health issues first ripped through my body. After numerous hospitalizations, treatment plans, adjusted treatment plans, procedures, and time, I healed. I was able to return to a normal (for someone with ulcerative colitis), full-time working life. . .until I couldn't.

Three years ago a very similar situation occurred, but this time with an entirely new set of symptoms. After undergoing endless tests, procedures, and blood tests, a primary diagnosis of Dysautonomia caused by preload failure was found to be the root cause.

This condition wreaks havoc on the autonomic system, leading to an ever-changing range of symptoms that might include muscle weakness, pain, dizziness, blood pooling, headaches, an inconsistent heat rate, blood pressure fluctuations, fatigue, temperature intolerance, and so much more.

Due to the long diagnosis time and the fact that medication helps symptoms but does not eliminate them, I have become accustomed to utilizing different methods to live with the symptoms. I hope these tips for living with Dysautonomia will help someone going through this life-altering illness.

living-with-dysautonomia-tips-for-survival

The Science Behind the Symptoms

Dr. David Systrom, a pulmonary and critical care physician whose primary research at the Brigham and Women's/Massachusetts General Hospital Invasive Cardiopulmonary Exercise Lab in Boston includes all forms of exercise intolerance, "believes that ME/CFS, preload failure syndrome and oxygen extraction failure may all be mediated by an imbalance between the sympathetic and parasympathetic nerves of the autonomic nervous system."

So what does this mean for those of us unfortunate enough to experience this hell on Earth? Through Dr. Systrom's very infantile research, a few key ideas have been hypothesized about the cause of a number of the symptoms, allowing for methods to counteract the body's reactions.

One such cause of dysautonomia due to preload failure is the inability of large veins in the legs, abdomen, and pelvis to move the blood up to the right side of the heart. The blood that is not pumped from the legs to the heart causes symptoms such as dizziness, fainting, unsteadiness, inconsistent blood pressure, and blood pooling.

Another issue that many ME/CFS patients suffer with is oxygen extraction—this creates problems in how the blood gets to the muscles, gets redirected to the muscle fiber mitochondria, and comes back to the heart. Continued problems with oxygen extraction are hypothesized to lead to muscle weakness, pain, and heart rate abnormalities.

A trip to the beach is made possible with the use of two assistive devices - note the chair and the cane in the background.

A trip to the beach is made possible with the use of two assistive devices - note the chair and the cane in the background.

Tips to Curb The Symptoms

For quick access to these life-saving tips, below I will list each symptom along with tips, tricks, and links to anything I have found helpful.

Dizziness

When first diagnosed with preload failure, the first thing Dr. Systrom advised to me do was "salt-loading". He explained that electrolytes are significantly affected, leading to many symptoms. I have found this method very effective in preventing dizziness and recommend the following tips:

  • Eat pickles, lots of pickles! Any time I'm feeling a bit "off", or know I have a busy day coming up I get my fill of sodium via pickles.
  • Electrolyte drinks are highly recommended. Because I didn't want to drink sports drinks every day, I needed an alternative way to get my electrolytes. I tried all the highly referred brands, but because I'm very sensitive to many tastes, I just could not get the drinks down. I finally found a product called Hi-Lyte. It has about the same amount of sodium per serving as Gatorade and no taste! I add 8 drops of the liquid into anything I'm drinking, and it provides me with sodium, magnesium, zinc, and potassium.
  • Assistive walking devices: Yes, devices, as in more than one! My cane has saved me from innumerable falls. It's nothing fancy but is adjustable and adorned with a four-point rubber foot (purchased at CVS). I also have walking sticks and a wooden staff, but I use these sparingly. For long-distance walking, hiking, beach outings, uneven terrain, or even yard work, I use my Walk'n'Chair, a multi-terrain walker/wheelchair combo. I highly recommend it for anyone that is looking to stay active with an assistive walking device.

Muscle Weakness

Dr. Systrom's next recommendation was to slowly strengthen my legs through the use of a recumbent bike, as well as a specific exercise plan provided by his team.

  • The Recumbent Bike makes exercising possible because in the sitting or reclined positions I don't feel faint and can exert much more energy than if I were standing. Recumbent bikes can be found on craigslist and Facebook Marketplace at an affordable price.
  • Planet Fitness membership: While I highly recommend the use of a recumbent bike, purchasing and storing your own can be challenging. For a very affordable price, you can have access to a recumbent bike, exercise balls, massage chairs, and an entire community!
  • Walking devices, again: Walking devices are helpful in preventing pain due to muscle fatigue and injury. I cannot say enough good things about the Walk’n’Chair. If you are someone that tends to push themselves maybe just a bit too far for your body's liking, the Walk'n'Chair may be the appropriate device for you.
Apple watches can alert you when your heart rate goes too high or too low.

Apple watches can alert you when your heart rate goes too high or too low.

Pain

  • Massages: Whether you go to a professional, a loved one, or use a hand-held massage device, massages are essential in managing muscular, joint, and venous pain. Another perk of joining Planet Fitness is access to their regular and hydro-massage chairs.

Blood Pooling

Blood pooling is a symptom that leads to other symptoms such as dizziness, lightheadedness, fainting, and irregular heart rate.

  • Reclining and keeping legs elevated is a quick way to stop the pooling, although, laying down all day is not a viable solution.
  • To deal with blood pooling in the up-right position I depend on compression socks, compression leggings, and massages. There are many options for compression items: My doctor recommended compression from 15-30mmHg, starting low and working my comfort level up. These are the compression socks I have been using this summer.

Irregular Heartrate

  • Monitor your heart rate with a device like an Apple Watch.
  • Listen to your body.
  • Sit down when your heart rate starts to jump up or down.

Temperature Intolerance

Temperature intolerance is the symptom that alters most of my abilities daily. This awful symptom causes brain fog, weak/heavy muscles, headaches, heart rate irregularities, difficulty breathing, and much more.

  • Combating temperature intolerance is an ongoing balance of hydration, electrolytes, and temperature regulation.
  • Icepacks cool you down quickly when you feel yourself overheating. I have used this one in the past.
  • Air conditioning is a necessity in avoiding the heat and humidity during the summer weather.
Benji, waiting to go for a walk

Benji, waiting to go for a walk

Do What Works for You!

While many of those that suffer from Dysautonomia experience most of the symptoms discussed above, remember that all people are different. We all experience symptoms differently and may respond to treatments differently. Choose the methods that you think may work for you, and if they don’t, try something else. Be patient with your journey and be kind to yourself.

This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.

© 2021 Michelle Spain

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