Hello everyone, 

My name is Amanda, I was diagnosed with chiari as a freshman in high school. The neurologist I had at the time told me that the malformation wouldnt be causing all the symptoms I was having and basically wrote it off as anxiety. I missed most of my freshman, sophmore, and junior year of high school. As a senior my schedule was half days so it was easier to make it through the day, whereas the other years I was leaving halfway through the day. Fast forward a couple of years the symptoms got much worse, this time I had dizziness and passing out added. I was diagnosed with POTS, after doing research I figured out that the POTS and chiari are related. 

Its been a long road, I have met with one neurosurgeon who is hesitant to do surgery on anyone. I do appreciate his approach on not wanting to jump right into surgery because of the complications that can come from it. But as of lately everything seems to be a struggle. I work 40 hours a week and I have to go straight to bed when I get home and spend most of the weekend in bed. I also have a question for those of you in relationships, how much of your struggle do you share with them? My boyfriend is wonderful, he knows when it is an off day for me. But I feel like I am walking a fine line and not wanting to be "complaining" too much or just worrying him too much (he has said over and over that he will support me and help with whatever I need, and he is also good about realizing that some days I just cannot do anything and he is fine with that). 

I wanted to say hello and introduce myself!