Cranberry Tea Time

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Dysautonomia

Dysautonomia is an umbrella term used to describe any dysfunction of the autonomic nervous system.  The autonomic nervous system controls any bodily function that one does not consciously think about. These include: heart rate, blood pressure, circulation, temperature regulation, digestion, sensory perception, energy production, and more.  If the autonomic nervous system is not functioning properly, then all of these functions can become impaired.

There are many different types of dysautonomia, including the following:

 - Postural Orthostatic Tachycardia Syndrome (POTS)

 - Neurocardiogenic Syncope (NCS) or Neurally Mediated Hypotension (NMH)

 - Multiple System Atrophy (MSA)

 - Pure Autonomic Failure (PAF)

I have been diagnosed with POTS and NCS.  Therefore the remainder of this page will focus on these two types of dysautonomia.  POTS and NCS are also sometimes referred to as "Orthostatic Intolerance" because the body fails to adjust to gravity when the patient stands.  When a healty person stands up the veins in his legs constrict to send the blood back up to the heart and brain, but in a person with POTS or NCS the veins in the legs do not constrict sufficiently to accomplish this.  This causes blood to pool in the legs and abdomen, which reduces normal blood flow to the brain. 

People with POTS have a significantly elevated heart rate upon standing.  Those who have NCS have a drastic drop in blood pressure when they stand, resulting in a faint (syncope) or near faint (pre-syncope).  A diagnosis for POTS or NCS can be made based on the heart rate and/or blood pressure readings during a Tilt Table Test. 

The type of symptoms and severity of symptoms vary from patient to patient.  I myself have so many symptoms that I cannot remember them all, and must keep a typed list to bring to my doctors.  To help you understand a bit of what "potsies" go through, I will share a few of my symptoms below. 

                                           My Symptoms:

Tachycardia upon standing                                Low blood pressure        

Shortness of breath                                           Generalized weakness

Lightheadedness, Dizziness                                Extreme fatigue

Headaches                                                       Blood pooling in limbs

Fainting/near fainting                                        Sensitivities to some foods

Numb/tingling fingers                                       Easily over stimulated

Chemical sensitivities                                        Nausea

Muscle and joint pain                                        Sleep disorders

Cognitive difficulties                                          Weight loss and weight gain

Worsening of symptoms with activity                  Intolerance to heat

 

Some forms of dysautonomia (like MSA) are life threatening, but POTS and NCS are not.  They can be very debilitating and life altering, but they're not life threatening.  Life with dysautonomia is hard, so we are a tough and determined bunch!

There is no cure for dysautonomia, but there are treatments available to help keep some symptoms under control.  Every patient responds differently to the medications, so it can take some time to find the right combination of meds for an individual.  If and when a dysautonomia patient finds a good combination of meds, it may improve symptoms greatly, or only offer slight relief. 

If you want to learn more about POTS, NCS, or other dysautonomias, you can check out the websites, articles, and resources listed on the Links page. 

Definitions for words in italics can be found on the Glossary of Terms page. 

Pictures of POTS

I'm going to show you some pictures that will help you to see a small part of what is wrong with my autonomic nervous system. These are pictures of my feet while lying down and then while standing. You can see them turning purple because of the blood pooling in them. After only two minutes of standing, my ankles become half an inch bigger around. Because the blood pooling goes all the way up to my waist, that's a lot of blood that doesn't make it back up to my heart and my brain. These pictures don't show much, but hopefully they give you a little bit of an idea of what is going on inside the body of someone with dysautonomia. We look normal, but our system certainly is not functioning normally!

 

<---- These are my feet while I am lying down in bed. This is their normal color.

 

 

 

 

 

 

     

 These are my feet after standing for one minute. Some blood is pooling, and my ankles have already increased in size. After two minutes my ankles are each a half inch bigger.  ---->

 

 

<----  These are my feet after standing up for seven minutes. They are purple and very achy. By now the blood is not just pooling in my feet. It is pooling from my waist down. I'm lightheaded, dizzy, tired, and feeling faint.

 

 

 

 

 

 When these pictures were taken I had Midodrine in my system. Midodrine is a medicine that causes vasoconstriction. If I did not have Midodrine in my system the blood pooling would have been much worse, and I would not have been able to stand up for seven minutes.

Dysautonomia Found In Art

My doctor recently shared this painting with me.  It is titled Doctor and His Patient and was painted by Jan Steen in the mid 1600's.  This was during the Dutch Realism period when artists were starting to paint real life, and even sick people.  My doctor believes that Jan Steen was painting someone with Joint Hypermobility Syndrome and POTS!  If you look closely, you will see that the woman has fair skin, light hair, light eyes, and her body appears "loose", all of which is classic Hypermobility.  Notice she also appears faint and tired.  The hand the doctor is using to take her pulse is her normal skin color.  The hand that is in her lap is a bluish color, which happens when blood pools and doesn't circulate properly.  (The painting is a little dark on here, but he saw one that was more clear.)

My doctor also shared with me a medical article from 1871.  This article clearly described POTS.   In 1919 Sir Thomas Lewis also described POTS, but in great detail this time.  The name POTS was first used in 1944.  Dysautonomia isn't something new; it has been around for a long time.  There is still much we don't understand about dysautonomia, and treatment has a long way to go, but I am glad to have the medicine and understanding that we do have now.

Support Dysautonomia Awareness

Would you like to help spread dysautonomia awareness?  DINET is selling awareness t-shirts at $15 a piece.  The proceeds are funding a dysautonomia documentary now in the making!  If you are interested, you can purchase the t-shirts at DINET.

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