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Cha-Cha-Changes To My Diagnosis

The wait to get to Mayo Clinic was more than just the trip itself. It was necessary to get answers. Having something that is technically not rare but basically ignored by medicine, can be devastating because you feel like your world is crumbling and no one seems to care. During this journey to a diagnosis I have ended up with three types of doctors: The one who has heard of POTS and says, "eh,...its not gonna kill ya. Eat more salt." DISMISSED. The one who has never really heard of it and dare I say, google it while I am sitting there. Yeah and the last one that makes you think that psychiatry is the answer and you have essentially become a waste of time. Bonus: the one that really cares but has no clue and will support you anyway. Yeah Dr. P 😃. The whole point of this blog is to share my story from the point of view of a 40 year old woman, with POTS. I understand that there are people who don't have the means and support to go to such lengths for answers but I hope doctors will hear us and see that we are in need and are underserved but are still very much worth the effort.

Back to my diagnosis...Well I started this all off with being told that I have Neurocardiogenic Syncope

and a touch of POTS like it was a dash of paprika on potato salad or something. However, during my follow up video appointment with my doctor at Mayo Clinic, it was confirmed that I do in fact have POTS. But not just any POTS, like its basic or something but I got the bells and whistles kind called Hyperadrenergic POTS, say that three times fast. I also have all of that plus some on my medic alert bracelet. It was explained to me that my body thinks that I am about to start running at a high rate of speed even though I am standing completely still. The doctor showed me the graph from my nemesis, the tilt table, that showed my heart prepping for said race. The line on the graph went up on a steady incline and really looked like I was on the move and not strapped to a table. In my mind it was like the cartoon character tearing up the rug running away from danger. This is really the second time since 2009 and dozens of doctor visits that I felt heard and cared for. He also acknowledged that my thalassemia beta minor was making my symptoms a million times worse. The bottom line is I gained even more understanding about what my body is doing and more importantly how to stay a step or two ahead of my symptoms.

I began to understand why I get hot and have, what feels like, heart palpitations. Funny enough I often hit the target workout zone on my fitbit when simply standing or washing dishes. I hate tricking it like that. 😊Also, based on the copious amount of blood that was taken, I did not have an autoimmune disease, yet, but I was on the cusp of developing one. Most of the tests were on the higher edge of normal. They saw an issue with Mast Cell Activation Syndrome and started me on a protocol to treat it. There is an idea that maybe that would help correct my POTS. I am extremely allergic to many things and most reactions result in anaphylaxis so it fits.

Current day me is still on the protocol and there has been some improvement but there are also areas that are getting worse. During a recent video appointment with my doctor as Mayo Clinic, there were a few tweaks made to the medication and I hope they work. Standing around still causes issues like blook pooling in my legs etc. Since I am darker complected, I don't exhibit the color changes of the flushing and pooling like others do but I can say that it is surely happening. I still need to rest or else I act like a malfunctioning robot. For example, last week I didn't get enough sleep and it was an emotional time because my cousin passed away. I had to drive out of town for the funeral and by the time I got home I felt like I was a pixelated character trying to act like everything was alright.

I want to also let ones know that there is hope. You can get a diagnosis and help. However, there are too few people serving this underserved community. You are not crazy. You are not a waste of time. My situation is still fluid with Hyperadrenergic POTS, MCAS, Thalassemia Beta Minor, Asthma, possible EDS, Fibromyalgia and counting. My medic alert bracelet really needs a drop down. All in all, I am not just my diagnosis. I am many things and through it all I find joy!

Until next time.


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