Finding My Root Cause
I've been on a mission. A mission to figure out why I developed POTS and other co-morbid disorders. Much is still unknown about POTS, the way it develops and what mechanisms are involved, but I do know that it is important to search for the root cause. The main reason being is that if you treat said underlying condition and help that, your POTS symptoms have a better chance to improve. Some root causes can be reversible or better managed, while some cannot. Others are trickier to pin point or find with current testing. Regardless, it's important to try to find one if you can because it can often change treatment.
Last February in 2019, I saw Dr. Goodman at the Mayo Clinic in AZ and underwent a lot of testing. It was pretty miserable being off all of my meds but we were able to gain much more information while there.
We learned that I have both a hyperadrenergic and neuropathic form of POTS. When both of these types are seen together, there's almost always something autoimmune going on, according to my doctor. And so began our mission to try and confirm this.
Abnormal sweating on the QSART test - my feet don't really sweat
Blood tests revealed some elevated abnormal antibodies
My catecholamine test was positive
The hyperadrenergic/neuropathic combo of POTS
My POTS has gone up and down throughout my life - flares - you could say
We repeated the labs a year later and found that these antibodies (VGKC) were still elevated and would probably never go back to normal. These antibodies in themselves can serve as an autoimmune marker.
Based on these findings and my persistent state of POTS and other symptoms, my doctor was able to confirm that I have an autoimmune form of dysautonomia.
This changes treatment options for me.
The next step for me is to look into getting immunoglobulin infusions, either in the form of IVIG or SCIG. Immunoglobulin is a blood-based therapy that in a sense, borrows from other people's immune systems. Thousands of donors are required to make up a single dose. These infusions would help boost my immune system to fight the autoimmunity. Since I knew I had POTS and even before that, I've been searching for an underlying cause of all of this.
I asked my doctor if there were any people like me with this rare antibody who did well on this treatment and saw great improvement. He said there is a subset of patients he has seen that are similar to me with the same elevated antibody who did really well on immunoglobulin and felt better overall. I almost cried right there on the phone and definitely teared up after.
To have the chance at not having a headache every day? Reduced pain and fatigue? Improved POTS symptoms? I can't even imagine because it has been so long since I've felt somewhat "normal." I'm very excited about this option and even though I may have to wait a bit to start it (largely due to the COVID19 pandemic), I have newfound hope again for better treatment that would actually target my root cause.
If you don't know yet what could be causing your POTS, I encourage you to explore this with your doctor at some point. You're always welcome to message me through the contact page if you have any questions about POTS, my posts, or want to brainstorm ideas to bring to your doctor.