Dysautonomia Awareness Month

The month of October is Dysautonomia Awareness Month. The idea is just to raise awareness Dysautonomia International has planned ways to do this. To get involved go to: http://www.dysautonomiainternational.org/page.php?ID=3

The Start

On days like this where we haven't made any new developments I am going to start from the beginning and write posts about the big things that have happened up to this point. Starting... well at the start. As I have said before, the abdominal pain started on November 8; but the story begins about two weeks before that. At the end of October I had a weird virus that caused me to have a killer headache, sensitivity to light and sound, and achy joints. This started like no other virus I have had before, but then it transformed into your typical cold with coughing, headaches, runny nose, and a sore throat. We thought it went away completely. After about a week the abdominal pain and headache started very abruptly.

When I went to bed on 11/7, I felt fine and I had no pain.  When I woke up it felt like someone was stabbing me in the stomach. I tried to go about my day like normal. The pain however had a different idea. It kept getting worse through out the day until we finally went into the ER around 8:00 PM. We were pretty sure that it was appendicitis. At the time I was hopping that it was not appendicitis. Now I really wish it was. When we got to the ER they said that it either wasn't appendicitis, or that it was too early to do anything about it. They told us that if it got any worse we should come back into the ER. The next night it got so bad that I was not able to stand up straight or walk by myself. So we hurried back into the ER. This time they did a CT scan and blood work. Both of them can back normal, so they weren't sure what was going on. This time they decided to admit me into the hospital. Our insurance didn't want us to stay at UC Davis, so I took an ambulance from UCD over to Mercy San Juan.
To be continued...

Follow Up

I just finished with my followup appointment with my primary care doctor. We talked about the extreme fatigue episode that I had on Saturday. She thinks that this episode was brought on by depleting my energy stores and dehydration. I was expending more energy than my body had available when I was dancing. In order to avoid this happening again I need to stay hydrated, rested, and always have food on hand. The other thing we did at this followup appointment was get a referral to a neurologist at Stanford that specializes in Dysautonomia. Now we just have to wait to schedule an appointment.

And I am back...

We got home from the ER around 2 am this morning. I continued to slowly regain control of my muscles. It took about 4 hours to regain total control. While we were in the ER they ran a lot of blood tests. The majority of them came back as normal, but my ammonia and bilirubin came back slightly elevated. They actually had to do the ammonia blood test twice because the first time it was not put on ice fast enough. We are still not exactly sure what happened last night. But one of the symptoms of high ammonia is extreme fatigue. So that is a possibility. Ammonia is created in the liver as a part of processing nitrogen.  As of right now I feel fine. I will be following up with the cardiologist, pain clinic, and neurologist, but until then we are crossing our fingers that this extreme fatigue is not a recurring symptom.

Why Won't My Legs Work?

I am sitting in the ER with nothing to do, so I am going to tell you about how I got here. I woke up this morning feeling like I normally do, with a little bit of pain in my abdomen and head. I went about my day like I do any other Saturday, which is going to dance rehearsal from 7-12. Around 2:00 I was already exhausted from the day so I went to take a nap. When my mom woke me up from this nap I realized that I could not really move any of my muscles, and my chest, head, and stomach were in extreme pain. I was also really confused and my mind was really foggy. I stayed like this for awhile, expecting for it to go away on its own, but it didn't. We called the oncall doctor and he said that it would be a good idea to go into the ER. Then we had a slight problem, I couldn't move and my parents couldn't get me to the car by themselves. So we called an ambulance. They came and brought me to the ER. As soon as I got here they did an EKG and checked all of my vitals. Everything came back as normal. They also sent me in to radiology to get a CT of my head. As I am sitting in the ER I am slowly regaining control of my muscles. So far I can move my whole upper body. However I still don't have control of my legs. When we know what this is I will let you know.

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.