It’s one of those days!

Today is Thursday, May 2, 2019. it is 2:28pm. I am not in my chamber right now. I am reclined in my chair unable to do much. Welcome to my world!

It’s one of those days!

I developed a condition that probably is a result of my first serious head injury in February, 1969. We will discuss this condition later.

I fell from a vehicle going between 20-25 mph, was dragged by the vehicle and thrust from it while the driver was turning a corner. I flew off landed in the gutter. I was found by a neighbor who was returning home from work. I was unconscious and having seizures. My body was torn up and I had an apple size hole in the right side of the back of my head. Radiological findings were a depressed skull fracture medially at the back of my head and a brain bleed. Clear consciousness did not occur for many days. I was put in a medically induced coma to control the brain bleed at my optical nerve. The damage to my optical nerve resulted in months of partial blindness (I could only see different degrees of black). My recovery was slowed by a number of real physical limitations and lingering cognitive issues I needed psychiatric care from hallucinations and attempted suicides in my sleep.

It’s one of those days!

Over the years since then, I would often experience what I thought was hypoglycemia. Out of nowhere, I would feel faint, a headache always followed and the rest of the day or for days, I was mentally disoriented and found myself easily exhausted. I had been a lifeguard, swim instructor and outdoor enthusiast but could not handle heat or sunlight. These incidents were very debilitating.

In early 2008 I was standing at the stove frying taco shells. I felt faint. I called for my husband to catch me. He was able to lower me to the floor safely. I laid there unable to talk or think or see well. My husband called the paramedics. When they arrived, my blood pressure and heart beat were very low. They asked me questions that I had difficulty answering. I remember the paramedic holding up a coin. He asked me what it was. I told him that it was a quarter. He then asked me, “A quarter of what?” I looked at him as if he had twenty heads. I had no ideo what he was talking about. The hospital ER did not do much for me but observe my vital signs improving over the hours they kept me there. They referred me to my primary doctor and sent me home. The next day, I was still feeling light headed and had a nasty headache. My primary sent me to a cardiologist who told me that he was 99% sure that I had a certain condition. He told me that a tilt table test would properly diagnose it for him.

It’s one of those days!

I successfully passed the test! Two nurses assisted me to a table. They strapped me in at my head, chest and my legs. They put monitors on me. They told me not to move. They raised the table to a standing position. It was difficult to not move because the symptoms would come and I would react by tensing muscles or moving slightly. The nurses told me that I was getting close. I would think “Getting close to fainting? I don’t want that.” and I would frown. The head nurse finally called my cardiologist and told him that I was getting close often but not succeeding in whatever they were looking to find. My cardiologist told them to give me one nitroglycerin tab. It was barely in my mouth and I was out. I fainted that quickly. The nurses lowered the table and waited for me to regain myself. It took too long. I was unconscious, not breathing and my heart had stopped. The nurses were getting ready to use the defibrillator but my heart finally started faintly. I slowly came back to myself. It took over a half hour for my heart rate and blood pressure to return to normal.

My cardiologist met with me and told me that I was 100% positive for a condition called neurocardiogenic syncope. He prescribed Toprol XL which is a beta-blocker. I take one daily at breakfast. Most of all, my cardiologist told me that my body’s response is so severe that I need to immediately lay flat until the symptoms pass or I could suffer a bad outcome. Even if I am shopping or at church or at a park watching my grandson playing football (which actually happened), I have to lay flat immediately if I experience those symptoms that I am very familiar with.

My symptoms are 1) vision getting very blurry 2) my neck feeling that it won’t be able to hold my head 3) every muscle in my body feeling mushy. Lights out. It’s an awful feeling.

I have two prescriptive medications that I will continue to take daily for the rest of my life. NatureThryoid (I no longer have a thyroid/parathyroid gland) and Toprol.

It’s one of those days!

Now for today! What a morning! I woke and checked on D who had been awake for a few hours prior to me getting out of bed. I took a shower and then tackled removing the curtains in our bedroom and replacing them with another set of curtains we have. The bedroom looks better with these curtains and hopefully, our nights will be darker. Yahoo!

I walked into the kitchen to turn on the tea pot. Immediately my neurocardiogenic symptoms came quickly. I was barely able to stumble into my recliner. I took my pulse and counted less than 35 that minute. It took a few minutes to have the strength to request the blood pressure cuff from D. He brought it to me a few minutes later. By that time, it had been probably 10 minutes since near fainting. I took my blood pressure. It was 106/50 with a heart beat rate of 42. I was recovering. I had not taken my Toprol yet. Since then I have eaten and taken my medication. Now, for the recovery, no matter how long it takes to get back to “me.” Little by little I am making progress.

I will be sitting low the rest of the day. It is too much of an effort to do anything. I have the post syncope headache and I am unpleasantly lethargic. My entire body feels weak. I hit the wall, but I didn’t run a marathon or swim a mile. I neared the danger zone!

It’s one of those days!

Now for what I had promised at the beginning of this blog…

I recently realized that the neurocardiogenic syncope is an autonomic nervous system issue. A few months ago D and I were listening to a Dr describe dysautonomia and its relationship to TBI. He never mentioned my condition but I knew in my heart that the brain injury of February, 1969 caused it. I felt a sense of relief because I was able to place my neurocardiogenic syncope in it’s proper place…an outcome from my first serious brain injury.

A few minutes ago, I did a google search. I asked google (not alexis-don’t want her in my house), “Is neurocardiogenic syncope a symptom of dysautonomia?” Here is what I found:

Dysautonomias come in many forms, but they all involve the autonomic nervous system (ANS).

The ANS is responsible for maintaining a constant internal temperature, regulating breathing patterns, keeping blood pressure steady, and moderating the heart rate. 

Dysautonomia is a series of conditions affecting the neural network that controls automatic processes such as breathing, pupil dilation, and the heartbeat.

Neurocardiogenic syncope (NCS) is the most common dysautonomia. It affects tens of millions of people worldwide. The main symptom is fainting, also called syncope. This can occur on occasion only, or it may be frequent enough to disrupt a person’s daily life.

Gravity naturally pulls the blood downward, but a healthy ANS adjusts the heartbeat and muscle tightness to prevent blood pooling in the legs and feet, and to ensure blood flow to the brain.

NCS involves a failure in the mechanisms that control this. Temporary loss of blood circulation in the brain causes fainting.

I hadn’t expected today to end up this way but I am glad that I was educated. I am grateful for the years of knowing how to manage this condition. I am also grateful for a simple medication to stay the symptoms. I am most grateful for my husband. He has remained close today because he knows just how debilitating these incidents are to me.

Finally, I thank my God for being with me every day of my life. My life is precious. He made me in His image and likeness. I am made to look like and act like my Savior, Jesus Christ, my Messiah. Good news folks! It’s one of those days!

Hugs,

Suz

• http://www.medicalnewstoday.com  What’s to know about dysautonomia?