What is dysautonomia?
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.
Common symptoms include: an inability to stay upright, dizziness, vertigo, and fainting, fast, slow, or irregular heartbeat, chest pain, low blood pressure, problems with the gastrointestinal system, nausea, disturbances in the visual field, weakness, breathing difficulties, mood swings, anxiety, fatigue and intolerance to exercise, migraines, tremors, disrupted sleep pattern, frequent urination, temperature regulation problems, concentration and memory problems, poor appetite, overactive senses, especially when exposed to noise and light.
On May 2, 2018, I had a test called the tilt table test done to help figure out why I’ve been having random syncope spells. Syncope is just a fancy word for fainting.
Back in December I was driving one day and I couldn’t focus. I was passing things on the road…signs, stores, other cars and I was aware that I was passing them, but I couldn’t focus and process what the signs said or what specific stores I had just seen. It was a strange feeling. Little did I know that my blood wasn’t being returned back to my brain but instead it was pooling in my legs and feet. That would happen on and off for the next couple of months.
Sometimes my heart would feel like it was coming out of my chest, so I started to check my heart rate a lot. One time it got up to 146 beats per minute after standing for just 5 minutes, so I knew something was seriously wrong. My blood pressure stayed normal though, and that’s why I was so confused. I was expecting my blood pressure to be dropping because of the faint feeling I have so often.
Then the dizziness started. Every time I stand up, I feel faint. It’s the same feeling of when your blood pressure drops, but in my case it’s not dropping. After sitting for long periods of time I would start to feel faint as well. For example, doing homework, doing my hair and makeup, or eating meals all make me lightheaded. This lead to syncope, but I didn’t realize that my legs were turning blue because I never thought to look at them.
I actually fainted twice and that’s what lead to an ER visit back in mid April. They ran tests for thyroid issues, heart issues, anemia, anything they could possibly find and all of that came back negative. I was relieved but at the same time I knew I was sick so I wanted them to figure it out.
They admitted me for a night and sent me home the next day with vertigo. I tried meclizine for a week and it did absolutely nothing for my strange cognitive problems and syncope. So, I saw an ENT. All of the tests he ran came back negative as well. Then I came across the word dysauotnomia online. I knew it was that. I made an appointment with an electrophysiologist and he agreed that I had some form of dysautonomia and wanted to do further testing. I came home with a heart monitor for two days and then had the tilt table test.
The tilt table test forces your symptoms to happen. At home if I feel faint or dizzy and tired I just lay down because that’s the only thing that helps me feel better…the blood is being returned to my heart and brain again. During this test you are strapped to a bed and then they lift you up to an 80 degree angle and watch you. They watch your blood pressure, heart rate, and ask how you’re feeling during the whole thing. My resting heart rate was in the 60s-70s and when they lifted me up to an almost standing position, my heart rate shot up to the 140s. For the next 30 minutes I was miserable. My heart was pounding (it stayed in the 130s) and I just wanted to lay down, but they force you to stay in that position until they find a cause for the syncope. At 36 minutes my heart rate shot up to the 160s and then dropped dramatically to the 30s and my blood pressure also made a dramatic drop and I fainted. The nurse performing the test said that my blood pressure got so low, the monitor couldn’t read it.
Neurocardiogenic Syncope. What is it?
Neurocardiogenic syncope (NCS) is caused by a drop in blood pressure, quickly followed by faster then slower heart rate resulting in poor blood and oxygen flow to the brain which results in temporary loss of consciousness.
The onset may be abrupt or gradual and is often associated with warning symptoms such as lightheadedness, dizziness, weakness, feeling hot or cold, fatigue, nausea, abdominal pain, sweating, pallor, visual disturbances or confusion.
When a person stands up, the pull of gravity causes blood to pool in the lower extremities. This can result in inadequate blood supply to the upper body, including the heart and brain. Normally, the body automatically adjusts to the lower blood supply by increasing vascular tone, heart rate and cardiac output. Blood vessels contract, heart rate increases and the blood pressure remains about the same or drops slightly.
In those with neurocardiogenic syncope this mechanism does not always work correctly: with a sudden drop in blood pressure the heart tries to compensate with harder faster contractions- this stimulates receptors in the heart wall which send a message to the brain that the heart is pumping too hard and too fast. In response, the sympathetic portion of the cardiovascular center reduces its impulses to the heart and blood vessels, while the parasympathetic division or “vagal nerve” increases its impulses. This nervous system reflex causes the heart to slow dramatically or even stop and the blood vessels to open up so the blood pressure drops and the brain is no longer receiving adequate blood flow, which then causes fainting.
This is what they think I have but apparently those with this can also have something called POTS at the same time. I am still having testing done, but they know 100% that I have NCS. They also said my heart rhythm changed during the test, so I am not sure yet what that means.
So here’s the ugly truth.
There is no cure for it.
They have a few treatments like beta blockers to help with the heart rate and blood pressure…but I can’t take those because I have myasthenia gravis. So, the tricky part is finding medicine that will work and are safe for all of my medical conditions. Besides that, they tell you to increase your salt intake, drink tons of water, wear compression socks and get IV fluids every so often.
No matter how many autoimmune diseases I have been diagnosed with, I am still not prepared for when they say the words “there is no cure” or “it’s chronic”. It’s hard to hear and accept.
I spend a lot of my days laying down and feeling tired for a reason beyond my control.
I think the scariest part for me is knowing that it can happen at any moment and so I am trying to figure this out. It’s a difficult process. I have had the other autoimmune issues for 7 years now and still don’t know what the hell I am doing sometimes. You kind of have to take these challenges day by day.
I don’t know a ton about dysautonomia just yet, but once I find my exact diagnosis I will do everything in my power to stay positive and try to keep my symptoms under control.
The only thing I am looking forward to is meeting other amazing, strong, brave spoonies who go through this life changing diagnosis as well.