Happy Thursday Everyone!
Yesterday I touched briefly on the fact that I was recently diagnosed with POTS and that I would go in to exactly what that is at a later date. While I had planned on talking about this maybe next week, I am having a scary flare up today, so decided that maybe it would be a good idea to talk about it today.
A little over a year ago, I started getting noticeably dizzy every time I stood up. I had ignored it at first, thinking that I stood up too quickly or needed to drink less caffeine. When it wasn't getting any better no mater how much more water I drank or sugar I ate or didn't eat or protein I got in each day, I went to my then Primary Care doctor. He took some pretty extensive blood tests and they all came back normal. He diagnosed it as an inner ear infection and gave me antibiotics. They didn't really help anything, and the dizziness just stayed. I learned to live with it.
About 6 months ago, I had a scary incident with the dizziness at work where I was running in to walls and there was a cognitive disconnect between my brain and my body. I had to actively tell my body what to do in the moment because it forgot the automatic motions. This lasted for a good 2 minutes (my normal bouts of dizziness lasted 30 seconds to a minute). I went in to an urgent care clinic and they ran more blood tests, did an EKG, and a head CT, all of which came back normal. They then referred me to a cardiologist. The cardiologist had me wear a heart monitor for 24 hours, took an ultrasound of my heart, and also took more blood. All of these tests again came back normal.
It was around this time that I started actively looking for a solution on my own. I looked up one of the symptoms that had been written on my visit summary from Urgent Care, which was "pre-syncope" and came up with POTS. POTS stands for Postural Orthostatic Tachycardia Syndrome. The word Orthostatic is what originally drew my attention. The only test that had been performed with any kind of abnormal results so far was the Orthostatic blood pressure/heart rate test. I went from lying on the table with a heart rate of 80 and a blood pressure of 120/80 to sitting up with a heart rate of 128 and a blood pressure of 198/100. These are indicators of POTS.
So, I started doing a little bit more research. POTS is currently classified as a Rare Disease, but really it's just under-diagnosed. For the most part, doctors don't know a lot about it since it was first recognized in 1999. POTS lies under the Dysautonomia umbrella, which is diseases of the Autonomic Nervous System.
While there are many different symptoms of POTS, and a lot of POTS patients have different symptoms, mine include dizziness upon standing (known as orthostatic intolerance), body temperature regulation issues (I am cold all the time and it takes a lot to get warm), numbness in my hands and feet if I stand for too long from blood pooling in my limbs, low blood pressure, and on bad days I have issues with my vision. Today is one of those days. Currently large black spots are popping in and out of my vision. Sometimes I can go completely blind for upwards of a minute. I also will suffer from Brain Fog where it can be hard to speak or connect my brain to the rest of my body.
There is currently no cure for POTS, and it is degenerative, meaning that the symptoms will continue to get worse. There are some medications that can help manage the symptoms, but for the most part people who are diagnosed learn to live with it in one way or another. I have good days and I have bad days, but it's always there. My new cardiologist has referred me to a specialist that he works with at Evergreen Hospital in Kirkland's Neurology department. He specializes in Autonomic Dysfunction, especially POTS. I am hopeful that we can get a management plan that works for me.
At first I was relieved to have the diagnosis, because it meant that a year of going through these symptoms and having no answers and normal test results wasn't in vain. There really was something wrong. Then I very quickly shifted to frustration at it having taken a year to get a diagnosis, and me having to tell the doctors what I thought it was before they would bring it up. I am at a point now where I am feeling a little bit hopeless. I haven't heard from the POTS specialist yet, so I don't have a management plan, and in the mean time I am just dealing with the symptoms. I am also trying not to let this run my life, but it's hard when it actually does run your life. My activity on any given day depends on how bad my symptoms are. Today has been hard to concentrate because I am in full brain fog and having vision issues.
It's also difficult to relax and not live in this place of high anxiety right now because when you have Dysautonomia of any kind, your nervous system has a hard time calming your body down. What I would normally do to relax is work out, but I am in too much pain from the hip joint I injured to do that at the moment. So I am starting to resort to eating. For the last week or so I have been eating a lot more than I normally would, and not because I am hungry. I have been actively trying to numb the anxiety with food. My only saving grace right now is the fact that I am physically restricted to a point.
I'm hanging on for the moment.
Jenelle
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