Dysauto…what?

So yeah…its been a little while since my last post.

Honestly it is because I have been feeling so terrible lately that I haven't even been able to get myself and my thoughts together in order to formulate a post. 

I have had to use all of the very little energy I have to just get through most days, being a wife and mother and trying to keep up with the demands that those roles present me. 

Here is what has been going on….

At the beginning of March, I finally scheduled an appointment to see my primary care doctor because I had been dealing with some worsening heart issues. I had begun to have frequent heart palpitations, tachycardia (fast heart rate) and some occasional shortness of breath and chest tightness. I have had heart palpitations since I was 18 years old and have had them evaluated many times over my adult life. I have a heart murmur which was found to be benign and have been told that the palpitations are also a benign thing and were just something I would have to live with. But, the tachycardia and shortness of breath were new and disconcerting, so I drug myself out of my state of denial that I was having these problems and went to the doctor. When I went to my doctors appointment, they noted that my blood pressure was high in the mid 140's over 90's range. I was shocked! I have never had high blood pressure. This new issue in combination with my heart rate as high as 125 at times, palpitations and other symptoms prompted the doctor to order further testing for me. I wore a holter monitor for 24 hours which is basically where you wear a small iPod sized heart monitor with special stickers called leads attached to certain areas of your chest. It records the heart rhythm continuously during the time you wear it. This came back showing a fast heart rate at times with PAC's and PVC's (palpitations or skipped beats) but in normal rhythm otherwise.

 In the meantime, I also had an appointment with my rheumatologist because I have been having worsening joint and muscle pain. He felt that there was a possibility that the anti-inflammatory drug I had been taking for the joint pain, Mobic, could be causing the high blood pressure and advised me to stop taking it. He also started me on a drug called Neurontin, which is used to help chronic joint, muscle and nerve pain. Going off of the Mobic was brutal because I didnt realize how much it was actually helping with my pain. The Neurontin takes a couple of weeks or longer to work so I was miserable during that time. My pain levels on some days were literally more than I thought I could bear. Imagine the worst flu aches possible and then double that. It was awful! I also continued to have higher blood pressure than normal for me even one reading as high as 153/95. 

I followed up again with my primary care doctor last week and we discussed my heart symptoms as well as the other symptoms I have been dealing with for the last almost year. My rheumatologist had previously told me that he feels my issues are from Dysautonomia which just means disfunction of the autonomic nervous system. It has caused my Fibromyalgia like symptoms and now my primary care doctor feels that it may be responsible for my heart issues as well. I have done a lot of research about Dysautonomia and have found that many people who have Chiari Malformation also develop Dysautonomia. Dysautonomia can result from damage done to the brain tissue, nerves and therefore nervous system. This damage is done by compression of the nerves and brain tissues caused by the herniation of the cerebellar tonsils (Chiari Malformation) and resulting blockage of normal cerebrospinal fluid flow.

My symptoms of Dysautonomia are:
tachycardia (fast heart rate), palpitations, shortness of breath, chest discomfort, lightheadedness, exercise intolerance, severe fatigue, weakness, joint and muscle pain, tremors or feeling of shaking inside, heat/cold intolerance, foggy thinking, blood pooling in legs, insomnia.
I have most of these symptoms every day in varying degrees of severity, and I never know how I will feel when I wake up.

This article describes the many possible symptoms of and the treatments for dysautonomia. This quote from that article really describes what it is like to have this condition:

"How does someone with dysautonomia feel?"

"A person with dysautonomia can have a multitude of ever-changing symptoms. One day may be a good day with little symptoms, followed by three days of feeling awful and unable to do much at all. For the most part, there is no rhyme or reason to the symptoms someone with dysautonomia feels. There is no way of knowing or controlling these symptoms."

To treat my heart issues, my doctor prescribed Atenolol, a beta blocker which will hopefully slow my heart rate and lower my blood pressure to normal. Beta blockers are common treatments for those of us who have heart related symptoms from Dysautonomia. The Neurontin that I am on for pain is finally starting to work a little after being on it for three weeks and increasing the dose a bit. I am hopeful that I start to feel more improvement in my symptoms as I continue taking these medications.

So yeah, another diagnosis, another pill, frustrating symptoms….I am really over it all. I know I have spoken about keeping my positivity through all this in other posts. But, I also don't want to be disingenuous about things either. Honestly, I have been in an emotional tailspin at times lately. There are times where I just struggle to understand why God allowed this in my life. Why did he allow the car accident? Why did I have to develop these conditions? Why do I have to live with chronic pain? I know He has a plan for all things and He never makes mistakes. But, in my humanness, I wonder what purpose this has? I know I will never completely figure this out or understand it this side of heaven. I have to trust that God sees the bigger picture and if He brought me to it, He will bring me through it! Im thankful that despite my human emotions and lack of trust in Him at times, He never gives up on me. He never leaves me and He always loves me!

For those of you who would like more detailed information on Dysautonomia, this link describes its causes and symptoms.

Also, DINET (Dysautonomia Information Network) has a wealth of information available if you or someone you know is experiencing any of the symptoms associated with Dysautonomia.