What’s Going On With Rachel?

Holter Monitor

This is a personal health update for those who are interested.

What’s going on? Near the end of September I began experiencing a flare in symptoms related to my Dysautonomia diagnosis and passed out on October 15th. While this was the first time I had fully passed out, I had come very close on other occasions and knew this was the result of my illness. After passing out, the flare continued to build over the next week and landed me in the ER on October 24th following three days of increased shortness of breath, chest tightness, dizziness, and the like.

Yesterday (Nov 1st) I had a tilt table test that was positive for autonomic dysfunction (Dysautonomia). While this was a diagnosis that I already had been given by my own doctor and Dr. Grubb (a Dysautonomia specialist) , we had little testing to back up the diagnosis and little information on exactly what form of Dysautonomia we were dealing with. My doctors had mainly come to this conclusion through examining my symptoms and ruling out every other possibility.

Over the next month I will be meeting with my doctor, as well as Dr. Grubb, to fully go over the results of the tilt table and my current flare. Currently it seems we are dealing with Postural Orthostatic Tachycardia Syndrome (POTS).

What caused this flare? It’s difficult to tell. Flares like these can be brought on by any number of factors including weather change, stress, travel by airplane, emotional difficulty, and countless others. I did travel by airplane recently and the weather has quickly changed from summer to autumn; this could also be a delayed response to the emotional distress of losing my father earlier this year. More than likely, it is a mixture of multiple triggers.

Is this permanent? This flare will definitely be short lived, as most flares are; it will likely last a few more weeks, gauging by how I feel at present. As for the condition as a whole, my doctor is confident it will improve. While it will likely be something I have to be mindful of throughout my life, it is unlikely that it will always be as severe as it is and my doctor has assured me that I do still have a great deal of hope for a more “normal” life. At this point we are simply looking for the best approach to my particular situation and manage my symptoms.

Are you upset? No. Actually, I’m relieved. While this flare has been difficult, to say the least, the increase in symptoms has allowed us to find more definite answers. Other tests had been performed when my symptoms were less severe or performed poorly altogether (This actually wasn’t my first tilt table, but my last one was botched); and while my Dysautonomia was confirmed by Dr. Grubb earlier this year, there were still a lot of unanswered questions. It may seem strange to be relieved by a test coming back positive, but this is a common paradox of long-term chronic illness. After 6 years of intense testing and searching for answers, you come to a point where knowing is always better than not knowing. Despite my symptoms, I have countless tests come back clear. And while hearing that nothing is wrong is usually good news, I’ve had one too many doctors tell me, “You’re healthier than I am!” upon receiving my test results. That’s not helpful to hear when you feel the furthest thing from healthy. You start questioning everything and wondering if your illness is all in your head. That’s why having a positive test result is relieving, because it says that what I’ve been dealing with for the past 6 years is real. It’s valid. There are finally numbers to back it up.

So in a way I’m thanking God for this flare, despite the fact that it has me laid up in bed. Because it prompted a big step in the right direction and got me to finally retake that tilt table test with a more competent medical team. Once again, He is working everything together for good and I am grateful for His continual providence.

One comment

  1. beth stark says:

    Thanks for sharing Rachel. Our daughter has recently had a flare of her symptoms. We are assuming it is due to a perfect storm of stresses, and moving, and the fall (October Slide), and the bizarre weather of late, and… and… and. Hopefully, she too, will step back, regroup, and come back stronger. Praying you both regroup and refocus and get back to doing what you love.

Leave a Reply

Your email address will not be published. Required fields are marked *