Dysautonomia - What Is It?

The Autonomic Nervous System (ANS) controls all of the functions in your body that you never think about. This includes your heart rate, your breathing, the constriction and relaxation of the muscles and the peristaltic action of the digestive tract to digest your food and move it through.

One of the functions it performs that is so important has to do with the production of adrenaline and other hormones. Adrenaline causes the heart rate to increase and muscles to constrict. Since it is supposed to kick in when we are stressed, many of us have a constant flow of adrenaline. It also controls when the blood vessels constrict or relax which regulates where your blood flows and makes sure that blood is pumped up to the heart and the brain.

The list of things the ANS does is very long. But let's focus on these few for now.

There is a constant flow of information going to the body every day. The body receives this information through one of the five senses - sight, smell, sound, touch and taste. Then it sends that information to the brain. The brain is the central station to the nervous system. From there the ANS is notified of the stimuli and decides what to do.

For most people, this is the perfect system. But let’s talk about what happens if the ANS malfunctions.

Circulatory Issues
Most people are diagnosed with dysautonomia because of circulatory problems such as tachycardia. Even though it is a neurological issue, cardiologists find it first. A red flag symptom is called POTS (Postural Orthostatic Tachycardia Syndrome). That means that when you stand up, your heart rate will jump 30 bpm or more within a few minutes. Supraventricular tachycardia is very common. My average daily heart rate is about 85 now. If I start to exercise my heart rate will be at 120 within 10 seconds. It is too easy to go way over my safe heart rate.

Other symptoms of POTS are blacking out, graying out or tunnel vision when standing up. It can be painful in the upper back, neck and head when this happens. This is because the ANS does not tell the blood vessels to constrict in the legs and pump the blood up to the brain and heart to counter gravity as you stand. Standing still is much more difficult than walking since the muscle constrictions from walking help to pump the blood.

Many teens get this symptom but then outgrow it by the age 25. It is estimated that there are about 150,000 teens in the US with this temporary dysautonomia called “Partial Dysautonomia”. There are about 100,000 with dysautonomia that will last their lifetime. I believe the number may be much higher if you allow for other criteria.

So POTS is a symptom of an under-response of the ANS to a stimulus (gravity). Another circulatory issue is an over-response. If you were to get stuck in a blizzard, your body would send your blood to your torso to keep the organs warm at the sacrifice of the fingers and toes. Very often, those with a dysfunctional ANS will get the result with the least amount of coolness in the air or even from stress. This is often diagnosed as Raynaud’s Syndrome. Sometimes it even results in blisters on the toes throughout the winter since there is not enough blood in the feet to buffer the shoes rubbing against the toes.

The opposite can happen too. If you are in hot weather, a hot shower or even after using a hairdryer, the blood vessels can be triggered to open and allow blood to flow to the skin and to the extremeties. Normally this is good so that the body can be cooled but if it is a hyper-reaction, it can cause a lack of blood to the heart and head when it is not even that hot. The reaction is a fast heart rate to make up for a lack of blood circulating through the heart and extreme exhaust. It may feel as though the legs are very heavy due to blood pooling in the legs. You may have to give in and lie down for a few minutes to get the blood back into the heart and slow the heart rate down.

Blood Sugar Issues
Not everyone with dysautonomia has the same set of symptoms. Some have a different form of dysautonomia in which the circulatory system is not so much affected. This can make it difficult to diagnose. It may never be diagnosed in that case. The other body systems have so many other possible triggers that can cause misdiagnoses.

For example, if, as a reaction to eating sugar, you over-produce insulin until your blood sugar level drops to 50, 30 or even 15, the doctors may look for problems with the pancreas such as tumors, malformation of the pancreas or other weaknesses. When they find these are not the cause, they may simply say that you have hypoglycemia or hyper-insulinemia. They are both true but still the question is ‘why?’

The doctors looked for tumors in my pancreas and were very worried about my odd readings with my 5-hour glucose tolerance test. They even said that my body was dumping sugar into my urine like I had high blood sugar (diabetes) but it was happening when my sugar was already too low. I was 14 when they told me the best treatment is to never eat sugar. I agreed and quickly made that change and felt much better for it. The way it was described to me at the time was that my pancreas had an ‘on’ button but the ‘off’ button didn’t seem to work.

So the real ‘sugar problem’ I had wasn’t because there was something wrong with my pancreas. It is because there was something wrong with the ANS which continued to tell the pancreas to produce more insulin which continued to lower my sugar to a dangerous point. (The doctors never told me that it was the ANS and I wonder if they realized it was at the time and didn't explain it.)

Digestive Issues
I was older when the worst of the digestive issues began. I was a child with hypoglycemia and POTs and a teen when the Raynaud’s began but I was about 27 when I began to double-over in pain with what was later diagnosed as IBS (Irritable Bowel Syndrome). After many visits to doctors, I found no relief. It got to the point I was in severe pain on a daily basis.

After three years of pain, I went to Georgia for a wedding and my aunt convinced me to see a naturopath. He suggested a book and a special food elimination diet. I read the book and decided it was too hard. About two weeks later, I changed my mind after an especially excruciating day. With the elimination diet, I found relief. I also found which foods caused my pain when I began to re-introduce them after 6 months.

It turns out that most with dysautonomia have serious digestive issues as well. I’m fortunate really. Some get gastroparesis where the stomach functions slow down or even intestinal dysmotility where the intestines slow down. It is very painful and very difficult to eat anything. Food sensitivities are very common and must be addressed to live a ‘normal’ life.

The most important thing I found was that I had to get processed foods (prepackaged foods) out of my life. Later, I took the next step and found which foods caused me problems if they were not organic. You don’t have to buy everything organic but there are some foods that you would be better off not eating if you cannot get them organic.

Dysautonomia is very difficult but it generally can be managed. We will discuss how to manage dysautonomia soon. Please come back soon for that link and others to learn more about life with dysautonomia.

Continue from Dysautonomia to Co-Illnesses of Fibromyalgia and Dysautonomia .