Cardiology

Today I went in to have a consultation with a cardiologist. He listened to me tell my story for what felt like the millionth time. Then he ran an EKG and an Echo Cardiogram. These test all came back with no abnormalities. He said that the reason for the chest pain is the dysautonomia or the misfiring nerves. Also he said that the reason that I have been fainting is that my heart is having a hard time pumping the blood through my veins so the blood is pooling in my legs and not enough of it is getting to my head which causes me to blackout. I now have a new medication that I am trying which will help raise my blood pressure hopefully to get the blood back to flowing like it should be. I will also be getting a heart monitor to wear around all the time and when I get dizzy or faint I will push a button and it will record what my heart does sort of like an EKG. It will then send the data to the doctor. We are hoping that this will solve some of my problems.

My Journey So Far...

I am Zach, a 16 year old normal teenager, that is until November 8. This is when everything changed. I woke up that morning with a sharp pain in my stomach and a headache. I tried all day to ignore the pain, but by that night it hurt so badly that we went into the emergency room thinking it was appendicitis. When we were in the ER, they told us that it was not appendicitis. They said to give it time and it would go away. It didn't go away by the next night. It was actually worse than before so we went back in. This time they admitted me. I stayed in the hospital for about 5 days. In that time they ran a CT scan and an x-ray. Thet tested quite a few of different medications to see if they would help me. I was sent home with medication that they thought would help. This did not work well and a few days later I was back in the hospital. This time they ran another CT and x-ray as well as an ultra-sound. Over the next few months I was in and out of the hospital for a grand total of 35 days in the hospital. We have tested all sorts of pain medications including opioids and nerve medicines. The only medication that we have found even remotely helps with the pain is Neurontin (Gabapentin). With this pain I have gone through a lot of different diagnoses: Mesenteric Adenitis, Gastritis, Gastroperisis, Neuropathy... The new working diagnosis is Post-Viral Dysautonomia.

The symptoms that I have had include: nonstop headaches, chest pain, fainting, dizziness, and stomach pain. The headaches are located in the front of my head and have not gone away from the onset of the pain. The chest pain is a squeezing pain all around my chest. There is also a sharp pain in my chest when the pain is especially bad. I have been fainting almost once a day. I don't always blackout completely but I do get extremely dizzy and have to sit down or not stand up. The worst part of all of the pain was the stomach pain. It is a sharp, stabbing pain right around the center of my abdomen. This pain has also never gone away, but the Neurontin has helped to keep the pain down under a 4/10 on the pain scale level. Unfortunately the Neurontin doesn't seem to help with the headaches and chest pain.

We have also been looking for methods of pain relief that does not include medication. We have looked into physical therapy, a TENS (Transcutaneous Electrical Nerve Stimulator) unit, CBT (Cognitive Behavioral Therapy), and acupuncture. I have had three weeks of physical therapy so far. It seems to be helping a little bit, which is hopeful. Another thing that really helps when I am in pain is the TENS unit. The pain specialists have ordered one for me to have at home home after we discovered that it worked at physical therapy. It helps to bring the pain back down to a 4 when it starts to spike. The CBT has helped to keep me calmer and separate me from the pain. We are still waiting to try the acupuncture. We are keeping our fingers crossed that the acupuncture will have a positive benefit.

I have been living with these symptoms for 6 months so far. I will be keeping this blog up to date as I go through this journey in an attempt to help anyone else going through something similar.