Some of you already know that this past month has brought both light and anxiety to our lives. For while our twenty-year search for a helpful diagnosis has finally come to an end, we also now know just what we are in for and it's a bit scary!
For those of you who are not up to date on my life story, I'll fill you in with the short version... My family and I, especially my parents, have spent about twenty-one years now trying to figure out what illness is responsible for causing my endless list of symptoms that range from cognitive issues to stomach issues and more. It started with migraines when I was in the third grade, progressed to legal blindness in high school, temporary breaks from college for surgeries and hospital visits, then dropping out of college after seven years of trying with just an associates degree (something that takes normal students about two years or less to complete). When I dropped out of college for the last time, about four years ago, I could no longer use my legs to walk and needed assistance with everything from showers to bathroom visits and occasionally even feeding myself.
We saw every specialist that we were directed to and even went as far as Mayo Clinic in Florida which is a long way from Texas! Time after time, doctors who were considered fantastic examples in their field came up empty. Sure, they liked to make diagnosis and tell us the many different treatments that we could try to make things better. We heard everything from GERD, IBS and Gastroparesis to migraines, hydrocephalus, and narcolepsy. Well, in 2016 I had my first brain surgery and in 2018 I had my second. After they placed the VP shunt we were pretty excited when I started feeling better but were quite disappointed when my symptoms once again returned. After that I thought that we would never figure it out! But my boyfriend, the most wonderful man on Earth apart from my Daddy ;), encouraged me to try one more time - which brings us to the most recent diagnosis...
And this one finally makes sense!
According to the latest tilt table test results, I have Neurocardiogenic syncope. This is a condition in which your body's autonomic nervous system malfunctions due to a wide variety of triggers. So when a healthy person stands up, for example, their body knows to tighten blood vessels, etc. to make sure that blood stays where it needs to. With NCS, our bodies get confused so blood tends to pool where it is not supposed to. I.e. blood pools in our abdomen when we eat or in our hands and feet when we stand meaning that the much needed blood to our brains gets shorted out and we tend to faint as a result. Believe me when I say that this is a very simplistic and possibly inaccurate way to describe what happens but hopefully you get the gist of it.
Anyways, so now we know that I have an incurable condition that explains pretty much everything else. I still have hydrocephalus which plays badly with NCS (they tend to irritate each other) and I most likely still have cyclical gastroparesis (often caused by dysautonomia - the umbrella term which includes NCS and other forms). So... we now know that my "episodes" of collapsing are actually my blood pressure and heart rate bottoming out when blood rushes out of my brain. In fact, the doctor said that my systolic bp went so low the machines couldn't record it (under 30!). This is apparently very common for NCS and there is even a bit of danger as some people need pacemakers to prevent flat-lining. Fun stuff!
Haha, just kidding! It is not very fun when I have to stay on the couch most days and need a wheelchair to get around when I'm being stubborn. Honestly, my family, especially my boyfriend and parents, have to put up with a lot on a daily basis just to take care of me. I struggle with feeling like a burden but I am really blessed to have such a great support network full of love! I will probably never truly understand how they could choose to take care of me when I am so clearly a handful, but I am thankful nonetheless. And even though we now know that what we are up against will never go away, at least we have a name and a doctor who wants to help.
Blessings from a newbie,