What is Dysautonomia?
To put it simple, Dysautonomia means your autonomic nervous system (the system that controls all of your automatic body functions) is not working properly. So those with Dysautonomia can literally have symptoms ranging from mild to debilitating from head to toe.
While we at Mik's Hidden Hearts Alliance focus on providing a social outlet for our chronically ill hidden teens, we do feel it is very important to spread Dysautonomia Awareness and to help our families understand the complex world of Dysautonomia. So to help this endeavor, we are very proud of the work done through our friends at Dysautonomia International. They have a very thorough library on Dysautonomia information. Please check out their page here for more information.
The symptoms of dysautonomia conditions are usually “invisible” to the untrained eye. The manifestations are occurring internally, and although the symptoms are verified medically they are often not visible on the outside.
Symptoms can be unpredictable, may come and go, appear in any combination, and may vary in severity. Often patients will become more symptomatic after exposure to heat, stressors, excitement or physical activity. Patients may find themselves involuntarily limiting their lifestyle activities and isolating themselves in order to compensate for the conditions.
Think you might have Dysautonomia?
Do you suspect you have Dysautonomia? One of the first indicators is problems with your blood pressure and pulse rate extreme changes when you go to a standing position. Click here to learn more about what you can do at home or have your general doctor do for the first step in a possible diagnosis: http://mikshiddenheartsalliance.wordpress.com/2012/08/23/think-you-have-dysautonomia-poor-mans-tilt-table-test/
How do you diagnose Dysautonomia?
To diagnose dysautonomia, a tilt-table test is usually performed. This test evaluates how the patient regulates blood pressure in response to simple stresses. Tilt-table testing involves placing the patient on a special table with a foot-support. The table is tilted upward while various machines monitor blood pressure, electrical impulses in the heart and oxygen levels.
What about Treatment?
Treatment requires a multi-disciplinary (some of the specialties can include: cardiology, neurology, GI and immunology) approach which most often includes a regimen of prescription medicine(s) as well as various forms of physical therapy. At this time, there is no cure for Dysautonomia, but several different treatment options are available. Patience, persistence and a positive attitude is important to help you move forward.
What are some sub-types of Dysautonomia?
The following diagnostic terms may be issued to patients with forms of dysautonomia:
- Postural Orthostatic Tachycardia Syndrome (POTS)
- Neurocardiogenic Syncope (NCS)
- Vasovagal Syncope
- Neurally Mediated Hypotension (NMH)
- Post-Viral Dysautonomia
- Familial Dysautonomia (FD)
- Non-Familial Dysautonomia
- Generalized Dysautonomia
Where can I find help?
Mik's dysautonomia team of doctors are located in Houston, Texas and we highly recommend them.
Dr. Numan (cardiologist), Dr. Butler (neurologist) and Dr. Pacheco (Immunologist) with UT Physicians / Children’s Memorial Hermann Hospital in Houston, Texas are a dedicated team that brings hope to their dysautonomia patients and their families. Office Number: 832-325-7120
Because Dysautonomia can affect the entire body, a wide range of symptoms can be attributed to it. Please note this is a comprehensive list of some of the symptoms for Dysautonomia patients. You may have just a few or several.
Syncope / near syncope (fainting)
Orthostatic Hypotension (excessive drop in blood pressure when patient assumes upright posture)
Orthostatic Intolerance (inability to maintain upright posture without dysautonomia symptoms from occurring)
Tachycardia (rapid heart rate)
Extremely Low Blood Pressure
Wide swings in blood pressure
Sudden drops in blood pressure
Chest Discomfort and/or Pain
Lightheadedness and/or Dizziness
Extreme Overall Weakness
Fibromyalgia / All Over Nerve Pain / Touch Sensitivity
Migraines / Headaches
Cognitive impairment which can include difficulties with concentration, brain fog, memory and/or word recall
Temperature Regulation Problems
Abdominal Pain / Gastrointestinal Problems
Delayed Gastric Emptying / Nausea
Shortness of Breath
Mood Swings / Adrenaline Surges / Anxiety