Dysautonomia is a general term used to describe any irregularity or malfunction of the autonomic nervous system. There are several types of Dysautonomia. I have Postural Orthostatic Tachycardia (POTS). The distinct characteristic of POTS is low blood pressure accompanied by tachycardia (a high heart rate). These two symptoms are drastically increased when standing, because gravity pulls blood down away from the heart and brain. Because my autonomic system does not respond properly, the mechanisms to return blood to my heart and brain do not activate, causing fainting (among other things.)
So, what is the Autonomic Nervous System (ANS)?
Most people have heard of the Central Nervous System and have a basic understanding of its function but the ANS and its role are not always as well understood.
The ANS is controlled by the brain stem and is in control of all internal organs, glands and smooth muscle. It controls ALL involuntary actions of the body.
Just stop and think about all the things that your body does automatically; breathe, regulate heart rate, regulate body temperature, digest food, secrete hormones, etc.
Now, imagine if all those little things, didn’t work. They have no direction. That is what has happened to my body. The main controller (the ANS) of all of my body’s involuntary internal activity is broken, hence, so am I!
What are some of the symptoms that I have with my Dysautonomia?
There are too many to count. I have a symptom list that I take with me to new doctors. It has nearly 30 different symptoms listed and at any given time I can have any combination of those.
I am always tired. When I try to explain my fatigue, I compare it to having the flu. You know how when you have the flu, your body aches, you can’t get comfortable, everything is an effort? That is how I feel each day. I feel like I have the flu all the time.
I am constantly dizzy and have balance issues. I have learned to compensate for these issues. I hold on to walls and doors as I walk. I have to be careful when I walk, I often loose balance and stumble. I also have numbness in my limbs from time to time. This numbness can last for days or months. I never know when it will come or go.
Anytime I get up and move around, whether I am brushing my teeth or eating dinner, I become very sick to my stomach. The nausea is because while I am up moving, blood pools in my abdomen. I also have daily migraines. Some days they are worse than others. I have grown accustomed to these. They take a lot out of me to fight the pain each day.
What sort of modifications have I made in order to live with Dysautonomia?
I take medications to maintain my body’s ability to function. I take daily medications to eat and digest food, sleep, regulate my heart rate, regulate my blood pressure. I have weekly IV Saline therapy to boost my blood volume and I take a medication to maintain that volume. I take pain medications for migraines and joint pain, as well as medication to prevent nausea. These medicines are all taken on a daily basis.
I use a wheelchair when I go out in public and have to walk. I have a small, portable electric wheelchair that has been such a blessing because it allows me to have some independence when I go out. I also have a walker with a seat that I use from time to time.
It is hard to explain in words the complete re-working of my life that Dysautonomia has brought about. I have to make adjustments for Dysautonomia in everything that I do but it has something that I have grown somewhat accustomed to.
Almost 13 years later, I am still learning to live with this disorder.