Unraveling the Complexities of Dysautonomia: A Journey of Symptoms, Causes, and Healing

Kelly came to me with ongoing symptoms of anxiety, nervousness, pain, dizziness, heart problems, breathing problems, and intestinal problems. She is one of those patients that doctors cringe when they see their name on the schedule for the day. Tests are always negative, so the patient is told that “nothing is wrong” but the symptoms persist. The patient says, “How can nothing be wrong when I feel so bad!?” They go from doctor to doctor, not getting anywhere. Finally, they are diagnosed with some description of their symptoms like POTS (Postural Orthostatic Tachycardia Syndrome), PANS (Pediatric Acute-onset Neuropsychiatric Syndrome), fibromyalgia (pain in the muscles tendons and ligaments), and so forth. These are not diagnoses, but just a description of what the patient is complaining about. They don’t help to know why, nor do they indicate how to treat.

Kelly has had these symptoms for many years. She has EDS (Ehlers-Danlos Syndrome) which is a genetic problem with making collagen. The joints of the body are lax causing the person to be super flexible (double-jointed). EDS is commonly associated with dysautonomia.

When she was an adolescent, Kelly was in a severe car accident where she had head trauma and was not expected to live. She survived and after a great deal of physical therapy, returned to “normal.” She got married, started a family, and was doing well for several years. Then the family moved to a new location, and she started getting symptoms. At first it was just dizziness, but at times she would have different symptoms such as breathing problems, headaches, or heart palpitations. She visited the ER too often, where they found nothing wrong. Over many years she documented numerous symptoms including:

• Weakness
• Fatigue
• Heart palpitations, rapid or slow heart rate
• Blood pressure too high or too low
• Shortness of breath with low oxygen saturation
• Dizziness when standing, or with exercise
• Temperature instability with sweating, or feeling cold all the time
• “Brain fog” with memory lapses
• Vision impairment due to dilated or constricted pupils, needing sunglasses indoors, and not being able to focus or read
• Tremors that can be intermittent
• Intestinal problems such as nausea and vomiting, bloating, and abdominal pain
• Blood vessel problems like pooling, swelling of the hands or feet, flushing of the face
• Bladder or bowel incontinence
• Fainting spells with tremors or “absence” episodes (she thought they were seizures, and was once admitted to the hospital for a “stroke”)
• Pain all over, randomly changing locations

The autonomic nervous system controls all the functions of your body that you don’t have to think about, such as temperature, blood pressure, breathing, heart rate, digestion, organ function, blood vessels, sweating, and so forth. It makes sense, then, that if it isn’t working a person could have all the symptoms above.

Kelly went to many doctors looking for answers, and had many tests on her blood, heart, inflammation, lungs, infections like Lyme disease or yeast, MRI, CT, and ultrasound scans. Everything came up negative, so she was told it was all due to “stress,” or “it’s all in your head.” Ironically, that is truly the case, but not in the way they mean.

What causes dysautonomia?

Considering the large list of symptoms, one would expect there to be some serious health issue, genetic abnormality, inflammatory disease, autoimmune process, biochemical imbalance, or metastatic cancer, but none of these are found. The tests are all, literally, normal! People who have this can feel like they are dying, but the tests will still come up negative. This is because it is a neurological problem, and not an anatomical or biochemical issue. The only way to test for dysautonomia is to look at the functions of the body. It works if your temperature, blood pressure, oxygen level, and so forth are well-regulated. Any irregularities in the normal functions of the body may be signs of autonomic nervous system dysfunction. These can be caused by anything that affects the nervous system:

Diabetes: Diabetic autonomic neuropathy can occur as a complication of long-term uncontrolled diabetes and can damage the autonomic nerves.

Autoimmune Disorders: Conditions like multiple sclerosis, Sjögren’s syndrome, and Lupus can cause autoimmune reactions that affect the autonomic nervous system. Also, autoimmune reactions or antibodies may specifically target the autonomic nervous system, such as autoimmune autonomic ganglionopathy.

Infections: Certain infections, such as Lyme disease, HIV/AIDS, and, Epstein-Barr Virus (EBV) can lead to dysautonomia.

Trauma: Physical trauma, such as head injuries or spinal cord injuries, can damage the autonomic nerves and disrupt their functioning. Post-surgical symptoms are common, and most often resolve within weeks, but sometimes persist.

Neurodegenerative Disorders: Disorders like Parkinson’s disease, multiple system atrophy, and pure autonomic failure can cause dysautonomia because of progressive nerve degeneration.

Medications and other Toxins: Certain medications or exposure to toxins can disrupt the autonomic nervous system. For example, some chemotherapy drugs, blood pressure medications, and some antibiotics have been associated with dysautonomia-like symptoms. Other drugs can become toxic, affecting the nervous system; there is an overlap with genetic factors when processing toxins is a problem.

Genetic Factors: Some forms of dysautonomia have a genetic basis. For instance, familial dysautonomia (Riley-Day syndrome) is an inherited disorder caused by specific genetic mutations. Some people have inborn errors of metabolism that create neurotoxicity, or EDS, as noted above.

Adrenal hormones: Some have increased sympathetic nervous system activity, leading to excessive release of norepinephrine, a stress hormone. This can result in symptoms such as rapid heart rate, palpitations, and elevated blood pressure.

Sex Hormones: Imbalance in estrogen causes hot flashes, brain fog, fatigue, or sleep problems.

Hypovolemia: Some individuals may have reduced blood volume or blood pooling in the lower extremities upon standing. This can lead to inadequate blood flow and oxygen supply to the brain, causing symptoms. This could be from a lack of electrolytes. For example, EBV (Epstein-Bar Virus) poisons the proteins that pump potassium into cells, causing low cell volumes, and severe fatigue.

Vitamin deficiency – There are many different nutrients that affect the nervous system. Some of the more common deficiencies that might lead to autonomic nervous system dysfunction include:

• B-vitamins
• Folic Acid
• Magnesium
• CoQ10
• Choline
• Inositol

PTSD

There is one thing that is the elephant in the middle of the room that we always talk around, and that is the emotional part of this. Emotional traumas can cause lasting effects on this part of the nervous system. Most people with dysautonomia have PTSD from previous trauma: car accidents, divorce, death of a loved one, bullying, falls, fractures, severe illness, sexual abuse, physical abuse, and so forth.

The emotional part is huge, and if it isn’t addressed properly, it is much harder to “fix” all the other things on the list above. There are many who have the same tests over and over, trying to find an underlying cause of their symptoms, but will not address the most important part of the autonomic nervous system – the brain. Control of the sympathetic and parasympathetic systems comes ultimately from the “limbic system” in the brain.

Wikipedia explains the Limbic system:

“The structures and interacting areas of the limbic system are involved in motivation, emotion, learning, and memory. The limbic system operates by influencing the endocrine system and the autonomic nervous system.[i]”

This is the emotional part of the brain that is involved in learning and memory, meaning that our memories are tied to our emotions. The effects of the limbic system are to influence hormones, and the autonomic nervous system. This is the connection to the problems associated with dysautonomia – they are controlled by the emotional part of the brain. This is why emotional trauma is so intricately tied to the symptoms.

Even the immune system that fights infection is controlled in the limbic system of the brain. People don’t get mold, yeast, viruses, or other infections unless there is immune dysfunction, which usually comes from the brain.

TESTS:

• Hormone balance – including cortisol, DHEAS, estradiol, progesterone, and testosterone.
• Blood sugar metabolism – blood sugar, insulin, HbA1c, C-peptide to determine insulin resistance.
• Heavy metal toxicity – Depending on exposure: fish can have mercury, and living in an old house might have leaded paint.
• Infections such as Lyme, mold, or viruses, depending on your symptoms and exposures
• Nutrient testing if you might be deficient.
• Methylation tests – vitamin B6, B12, and Folic acid, homocysteine
• Inflammation and autoimmune disease with screening such as CRP, ESR, and ANA

HOW TO HEAL

The concept of healing these issues is to start with any underlying problems such as chronic infections, toxins or deficiencies. The next step is to develop resilience in the autonomic fnction so the body can tolerate a wide variety of environmental variability and still keep the body stable.  This is done by providing both consistency, such as a sleep and eating schedule, and variability such as diet, temperature and breathing.

STIMULANTS: Avoid caffeine, sugar, drugs, marijuana, vaping, tobacco, nicotine, prescriptions, etc. Don’t use anything to “make you feel…” anything.

CIRCADIAN RHYTHM:

• Eat breakfast by 8am
• No food or drink after 6pm.
• Sleep by 10pm.

DIET:

• Ketogenic – Training your body to burn fat is important. It allows your body to be metabolically resilient.
• Intermittent fasting – this is another great way to improve the flexibility in your metabolism. The best way is to eat breakfast and lunch, and skip dinner, keeping an empty stomach until breakfast. Water is OK.

HYDRATION:

• Sodium — low sodium diets cause dysfunction so it is important to eat salt; sodium allows our body to hold on to water, keeping us hydrated.
• Potassium – all fruit and vegetables (16 ounces of celery juice is a great potassium supplement)  Eating fresh fruit and vegetables can hydrate your body well. Those who have had EBV, or mononucleosis, will find they need extra potassium over a long time.
• Water – drink enough, but not too much fluids. Around 32 oz per day, drink more if you’re thirsty, the object is to hold on to the water you have, and not dilute out your sodium and potassium, creating more problems.

EXERCISE – HIIT

• (High-intensity interval training) exercise to your maximum for short bursts. This only requires ten minutes per day.
• WIM HOF breathing exercises and cold therapy: https://www.wimhofmethod.com/

SUPPLEMENTS:

The supplements you use will depend on the need, or deficiencies found with testing. Some common ones that everyone should at least try including:

• Magnesium – 400 mg per day before bed
• Vitamin B12 – 1mg per day
• Folate – 1mg per day of methyl folate.
• 5-HTP – allows your body to make serotonin to balance your brain chemistry: 100mg twice per day

PTSD:

Healing from trauma is not an event, but a long process. Have patience, allow yourself room to grow and learn. The following are ways to help you along the path.

• Meditation and prayer to connect with yourself, and with God.
• Counselling, or Therapy – to have an outside person to listen.
• Nature is a great way to improve the autonomic nervous system, this can be done with a hike on a nearby trail, or by camping. Sometimes a week of camping without electronics is required to reset the circadian rhythm.

Books to read:

• The Body Keeps the Score by Dr. Bessel van der Kolk, MD.
• What Happened to You? by Oprah Winfrey is also enlightening.
• The Divided Mind by John Sarno, MD

Doing everything on the list will help a lot more than picking one or two. People do heal dysautonomia if they work at it. It does not “just go away” by itself. If nothing is done, or if the wrong things are done, it will persist for life. For this reason, it is essential to keep working on it.  Half the battle is the understanding that you aren’t dying, that it’s just overstimulation of the nervous system. Calming yourself allows the parasympathetic nervous system to relax the body.

Kelly is still working on her problems, and it seems like just when one is gone, another comes. This can be frustrating. It’s important to give yourself time to heal. If you aren’t healing, look for other possible confounding factors. This is not a healing event, but a healing process.