Hey everyone. Welcome to another post where I get to talk your ears off about more medical stuff. As you can tell I'm very passionate about raising awareness for all the medical problems I have (which are a lot). October is Dysautonomia Awareness month and it is probably one of the conditions that not many people know of because it's considered a "rare disease" even though it is estimated that 1-3 Million Americans have this condition and many more around the world.
What is Dysautonomia?
According to, Cleveland Clinic, "Dysautonomia refers to a disorder of autonomic nervous system (ANS) function that generally involves failure of the sympathetic or parasympathetic components of the ANS, but dysautonomia involving excessive or overactive ANS actions also can occur."
There are many different types of Dysautonomia but for the sake of time I am going to focus on Postural Orthostatic Tachycardia Syndrome aka POTS and Autonomic Dysreflexia (aka AD). I have POTS but since I also have a spinal cord injury, I thought I should include information about AD as well since it is a form of Dysautonomia. There isn't much of a diagnosis story for me to share because when I was officially diagnosed with POTS I already knew I had it and I was already doing some treatments for it.
What is Autonomic Dysreflexia?
According to Dysatuonomia International, "Autonomic Dysreflexia occurs in people with a spinal cord injury (SCI), specifically those with a cervical level injury but it can affect those with a lower level injury." In a person with a SCI, there is a roadblock in the spinal cord where the injury occurred and the corresponding nerves are also affected. The spinal nerves affect everything we do from regulating body temperature, sweating, breathing etc. When someone with AD has an attack, "there is an irritant impacting the person below the level of their spinal cord injury, and because their autonomic nervous system cannot process messages properly, this results in a myriad of symptoms that could lead to a stroke or cardiac arrest if not treated immediately.
Symptoms and Diagnosis of AD:
The most common symptoms of AD are:
Sweating above level of injury
Hypertension (blood pressure significantly above the patient's baseline pressure)
Slow pulse (less than 60 beats per minute)
Flushed face and clammy skin
The main diagnostic criteria is having a SCI injury above the T6 level but can affect someone with a SCI as low as T10. If you display any of the symptoms above and have an SCI of T10 or higher, go to the nearest Emergency Room where you can be treated immediately.
Treatment of AD:
1. Check bladder or catheter for fullness or kinks in tubing
2. Check the bowel for impaction
3. Check the skin for abnormalities such as bruising/burns/ingrown toenails/pressure sores and broken bone
4. Check clothing for tightness and be aware of extreme hot and cold temperatures
5. In women, menstrual cramps or ovarian cysts may also be the cause
What is POTS?
According to Dysautonomia International, "POTS is a form of orthostatic intolerance that is associated with the presence of excessive tachycardia (fast heart rate) and many other symptoms upon standing from a supine (lying down) position."
People with POTS may have really bad head rushes when coming from a supine position to an upright position such as sitting or standing. This is caused by the blood leaving the brain and rushing down to the lower extremities which can cause blood pooling and swelling in the ankles.
POTS can occur at any age but mainly occurs in females of a child bearing age (15-50). Males can have this condition to but 80% of those who do are female. The cause of that is unknown.
Symptoms and Diagnosis:
There are so many symptoms for POTS it would take me forever to list them all so here is an image with all the symptoms listed.
The main diagnostic criteria in adults is an increase in heart rate of 30bpm from a supine position to a upright position. In children the criteria is a heart rate increase of 40bpm. Most people are also diagnosed via a Tilt Table Test (TTT).
No two snowflakes are alike, so finding a doctor who specializes in POTS is crucial. The most common treatments for POTS include:
1. Increasing fluid intake usually between 2-3 liters per day. For people with gastroparesis or other disorders where they cannot consume liquids or solid foods, Saline infusion are used either via a peripheral IV, PICC line or a port.
2. Increasing salt consumption usually between 3k mg and 10k mg daily. This could be in the form of salty foods or even salt tablets.
3. Wearing compression stockings to help with the blood pooling and swollen ankles. (I found these really awesome compression stockings for dancers you can find here).
4. Raising the head of the bed (to conserve blood volume). This can take form of having a hospital type bed where the head can be raised or lowered or in the form of a wedge pillow (which is what I use).
5. Since most people with POTS have exercise intolerance reclined exercises such as rowing, recumbent bicycling and swimming are beneficial.
6. Avoiding things that exacerbate symptoms such as the temperature, foods etc.
7. Medication can also be used. One promising medication is called Fludrocortisone or Florinef. It helps keep the amount of water consumed stay in the body longer, similar how to SRRI medications keep the serotonin stay in the brain longer.
Is POTS Caused by Anxiety?
According to Dysautonomia International, "some of the physical symptoms of POTS overlap with the symptoms of anxiety, such as tachycardia and palpitations, POTS is not caused by anxiety. POTS patients are often misdiagnosed as having anxiety or panic disorder, but their symptoms are real and can severely limit a person's ability to function. Research has shown that POTS patients are similarly or even less likely to suffer from anxiety or panic disorder than the general public. Research surveys that evaluate mental health show similar results between POTS patients and national norms."
I really hope this post was informative for you. If it was don't forget to give it a +1 on Google+, share it with all your friends to spread awareness and leave me a comment below if you have POTS or you know someone who does. See you all next week!
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