Dysautonomia Awareness Month

blog-post

[Image shows three spoons on a laptop keyboard. Overlaid is torn white notebook paper with a red paper clip. On the paper in black text reads “Dysautonomia Awareness Month” with a teal awareness ribbon. At the bottom in small red text reads “Thee Crohnie Grace”]

According to Dysautonomia International, “Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the “automatic” functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control. People living with various forms of dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and in severe cases, death.”

All my life I had issues with tachycardia and low blood pressure, my dizziness was often wrote off as “Well you just stood up too quickly, that happens to everyone.” 19 years later, I have a cardiologist scheduling me with an electrophysiologist to confirm his diagnosis of POTS, one of the different forms of Dysautonomia.

Other forms include: Neurocardiogenic Syncope (NCS) and Multiple System Atrophy (MSA).

Over 70 million people world wide lives with Dysautonomia. It often is a comorbidity of Ehlers Danlos Syndrome as well as: diabetes, MS, RA, Sjogren’s, and others.

Since the majority of my zebra friends have POTS, that is my main focus here.

The diagnostic criteria for POTS is a heart rate increase of 30 beats per minute or more when standing in the first 10 minutes of standing, or a heart rate of over 120 in the first ten minutes of standing.

Symptoms range from mild to severe. POTS is a syndrome, it stands for Postural Orthostatic Tachycardia syndrome. Often it is caused by another disease. It has many causes including but not limited to:

  • Autoimmune Diseases
  • Chiari Malformation
  • Diabetes and pre-diabetes
  • Ehlers Danlos Syndrome
  • Multiple Sclerosis
  • Mitochondrial Diseases
  • Mast Cell Activation Disorders
  • And Many More!

Currently there is few treatments for POTS, mostly just increasing fluids and salt intake, some doctors will recommend Beta Blockers, compression socks, and various other life style changes.

Some things that people with Dysautonomia wish people knew:

“That it’s not over-exaggerating or being a drama queen and it’s a serious chronic illness that effects all of the body functions we don’t consciously control. I’m not lazy, I’m not making excuses, and I’m not faking.” -Ari Dennis 

“That just because I look perfectly health doesn’t mean I am. My diseases are still trying to kill me and one day they’ll succeed.” -Leigh Bullis

“Don’t laugh at me or call me lazy when I ask you to pick something up that I dropped. Bending over is one of the biggest challenges I face, and I think out of everything, it’s the most under estimated of struggles.” -Allie Mary

“It’s not funny when I fall or forget words or phrases when my brain is literally lacking oxygen. And it’s not fun to be forced to spend the majority of your day with your feet propped up, and the rest of the time with them not up having a migraine.” -Kaylee Gallagher
“Don’t tell me it must be nice to lie down most of the time because it’s not… it can get quite depressing after a while.” -Cassie Gunn

I never realized it wasn’t normal until it started getting bad. I stand up and my heart rate goes to 160 sometimes higher. The room will get dark and stay like that for a long time sometimes or until I sit back down. I can feel my whole body pulsing, my chest feeling like I can’t get enough oxygen, like there’s been weights put on top of me trying to lower me to the ground. When I walk, it feels like I’m on a boat, everything feels like it’s shifting right under me. I’ve ran into walls at the college because my balance was thrown off by the dizziness.

October is Dysautonomia Awareness month, but for some people it’s 24/7.

 

 

Citation

“Dysautonomia International: Postural Orthostatic Tachycardia Syndrome.”Dysautonomia International: Postural Orthostatic Tachycardia Syndrome. N.p., n.d. Web. 13 Oct. 2016.

 

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