Closing the Chapter on Diagnosis
I won’t bury the lead here. Today I was definitively diagnosed with POTS, and it’s a pretty big deal. This isn’t my first diagnosis this year, but it is the first one that I can confidently say rings true for me and my experience – plus we have raw data to back it up.
I met with a new specialist, a cardiologist, who was recommended to me based on her previous experience with dysautonomia and treating young women with POTS. This was the first doctor I’ve seen in months after taking a break for my mental health. After a year of gaslighting, negligence and dismissal, I couldn’t take another bad doctor visit. I had high hopes for today though, and it paid off!
So, what does it mean to have high hopes for a doctor’s appointment? Let me just walk you through my appointment today as a best-case scenario. After going through my medical history and my family’s medical history, including a check for hypermobility and questions about Ehler Danlos Syndrome (gold star), we talked about my symptoms and how they’ve impacted me. When I told her that I wasn’t able to work full time she shared in my frustration, she affirmed my symptoms and their patterns while giving me space to talk and ask as many questions as I could think of. Finally, she asked me “what do you think is going on?” This is the first time that a doctor has actually asked me that. She looked to me as the authority on my own body. I told her that I thought I had a dysautonomia but wasn’t sure which one. She immediately said, “Your symptoms are perfectly in line with POTS. I can tell you right now that I am going to diagnose you today.” Then I started crying.
If my case was so cut and dry, why did it take a year for someone to diagnose me correctly? In her words, many of her patients are immediately told that their symptoms are psychological, that they suffer from anxiety or panic disorders. They are diagnosed with CFS - as my interjection, she differentiates this from ME - and are told that there isn’t anything to be done. She has seen enough patients with POTS to diagnose on a case by case basis, not based on what POTS “should” look like but by how it has functioned for a variety of people. In my case, she pointed to mast cell activation, a reaction to heat that essentially causes an allergic reaction that effects my blood flow. My body doesn’t always react to changes in posture, unless my heat intolerance is active. I had never heard of this reaction before or linked it to POTS. I never thought that there were different kinds of POTS! I definitely didn’t know the treatment options available for it.
So, what does this mean for me moving forward? My treatment plan will be different than yours, everyone will have to find what works for them, but I’m committed to the following:
· Drink a metric fuck-ton of water (1 gallon per day.)
· Eat salt like its candy (something I already do and that my body craves.)
· Wear compression stockings as much as possible.
· Exercise my lower body, building up muscle that can help my veins constrict when they need to.
· Take allergy medication to mediate my mast cell activation.
With this plan I should be able to work full time again someday. I won’t have to constantly rest as my body will hopefully not be trying so hard to function correctly. I will always have symptoms, but I will have a bag of tricks at my disposal to help with them. I am no longer in this alone.
She told me today that the best thing she can do is give me closure. I never would have thought of that word on my own, but it is exactly what this is. I can confidently move forward in taking back the aspects of my life that I have lost this year. Instead of worrying about what the future will look like, I can take charge of what’s to come.