One of my biggest adventures in my health journey was going to the Mayo Clinic in Rochester Minnesota a few years ago for a full autonomic work up. It’s where I was officially diagnosed with a form of dysautonomia called POTS (postural orthostatic tachycardia syndrome) and where I was also diagnosed with gastroparesis.
My POTS story began after I was first diagnosed with Lupus and it was our same, amazing, rheumatologist who also suspected I also had autonomic issues a few years later. He noticed my tachycardia and my (as he called it) “corpse-like blood pressure” and promptly ordered my first ever tilt table test. For those who don’t know what that is, it’s basically a test where you’re strapped to a table like Frankenstein and elevated to a different angles (30 to 60 degrees) while monitoring your blood pressure, electrical impulses in your heart, and oxygen levels. It sounds simple and easy but if you suffer from POTS, basically your blood will pool to the bottom half of your body causing you to pass out; definitely not a fun test.
I went from that to a local cardiologist who had no real reference of what POTS actually was. He had one patient who showed similar symptoms and had decided to put me on the same course of treatment that worked for her. Long story short, that treatment did NOT work for me. That particular summer, he had prescribed medication after medication that my body couldn’t tolerate. I ended up practically living in the ER and the ER parking lot (where I waited to see if I was feeling bad enough to go into the building); I ended up taking 17 different medications during those few short months.
The doctor who kept prescribing medications that only made me worse also wanted to do heart surgery on me – luckily this was towards the same timing that we were loosing trust in him, so we decided to seek treatment elsewhere. THANK GOD because I 100% did not need surgery and later learned (at the MAYO clinic) that the surgery he wanted to do on me would have actually exacerbated my POTS.
So How Did I Get To The Mayo Clinic?
It was actually my Neurologist at the time who suggested I go to Mayo. He had done his residency there & had worked under one of their leading cardiologists who works closely with POTS. He got me on their waiting list and I was told that I would be likely be going towards the begging of September.
At this point in my life I was in desperate need of a doctor who actually understood the complexity of POTS and who was able to get me on a treatment plan. I was at the end of my college career at this time and going to classes was becoming increasingly difficult. I remember having to stop and sit multiple times on my way to every lecture hall and constantly crying on the phone to my mom because it was all so hard. My adrenaline surges were non-stop and had to miss countless classes because I was unable to sit upright at a desk. The months went by while each day brought tremendous frustration about how hard the tiniest tasks were.
I was one day into my finals before summer break when my mom called me – she said there was a cancelation and I was next up on the list. I was instantly excited until I realized it meant flying out to Minnesota the NEXT morning and having to scramble to tell my professors I wasn’t going to be able to take my finals in person (GULP!). The Mayo Clinic also wanted me off all of my medications immediately in order to get accurate test results so that threw another huge obstacle into the mix.
(Our hotel by the hospital – super close and was connected!)
The few medications I was on at the time felt like the only thing that was keeping me somewhat upright, so having to go off of them while traveling sounded like an impossible task. The next day I met my mom at SFO (she flew up from San Diego and I was going to school in Sonoma) and though I had to be pushed around in a wheelchair because standing was no longer an option, we made it to Minnesota.
(First official day at the Mayo Clinic- my sweet mom in the waiting room with me)
The cool thing I found about this hospital is that it’s connected to all of the surrounding hotels and facilities – it’s kind of like this underground tunnel system they have in place so it made it super easy getting from our hotel to the hospital in a chair.
I had no idea what this week was going to entail but I remember being shocked upon checked-in when I was given a thick stack of papers which was my week’s itinerary. I met with a nurse practitioner who was assigned to my case. It was with her that I first went over my symptoms to make sure everything I needed to be tested for was covered on my itinerary.
Besides all of the autonomic testing for POTS I had scheduled, she also added that I needed to see a gastroenterologist because I was experiencing ongoing stomach issues as well (this extended my stay from one week to almost two). They had me scheduled for non-stop tests for the first few days and then I was to meet with a team of doctors towards the end of my stay. It felt extremely overwhelming at first but thankfully my mom was with me to help and push me around in my wheelchair – I didn’t realize how huge the Mayo Clinic actually was.
The days were long and full of every test under the sun. Most I had done before, like blood, urine, stress tests, X-Rays, EKGs, and holter monitors, but there were also more a bit bizarre ones. I had something called a sweat test where they cover you in orange powder and put you in a little heated chamber until every inch of the orange powder turns purple (which leaves you looking bright pink the rest of the day!).
(Right before the sweat test)
(Right after the sweat test)
I had to eat radioactive eggs (!) for them to X-Ray and monitor how fast food was leaving my stomach. As well as multiple types of neuropathy and extensive autonomic testing to see how my POTS was affecting the rest of my body. I also had to have different tilt table tests done, one where they injected a drug half way through that acted as an adrenaline booster to see how my heart would react, and that one was easily my least favorite as it made my heart feel like it was jumping out of my chest. In a lot of ways, it was more than I was expecting but at the same time it was so relieving to have the top resources and minds at my fingertips who were familiar with what I was going through.
Not to my surprise, I was officially diagnosed with POTS towards the end of my time at the Mayo Clinic. They had me meet with different types of “management” coaches to give me resources to help with my day to day life where we went over aspects like exercise, fluid intake, sodium intake , lifestyle choices, etc.
There’s amazing art within the Mayo Clinic – It’s a gorgeous hospital. Overall, I was really happy that I went to Mayo and had a full POTS workup done. I was extremely impressed with how smoothly everything ran at such a giant hospital and how amazing their customer service was. Anytime I had testing scheduled at one of the surrounding smaller hospitals, a shuttle was scheduled. Even when we had to extend our trip due to added on doctor appointments, they helped with rescheduling with the airlines.
While there is currently no cure for POTS, it gave me a huge peace of mind moving forward knowing that nothing else was going on with my body (besides the SLE and EDS I already knew about).
It made me realize how uninformed my previous cardiologist was and it made me want to be as proactive as possible in trying to better my condition the best that I could. I felt validated in all of the pain I was experiencing and finally felt like my condition was being taken seriously. Mayo Clinic is the place to go when you need to get answers. While it was a tough two weeks physically and mentally, I would recommend it to anyone who needs a diagnosis or who needs the right treatment plan.
How do you go about getting an autonomic workup at Mayo?! I’m being told I may end up having to have brain surgery and I really don’t want to do it because I just don’t feel like it’s the answer to my problems (mostly because the doctors aren’t even sure what my problems are!)
Em & Kate says
I totally understand that! I was referred to get the full autonomic workup by my Neurologist at the time.
So what treatment did they put you on for the POTS as a result of this?
Em & Kate says
The treatment plans are very specific to each patient, but they revamped my medication list, adjusted my diet & put me on a new exercise regime.
I really want to get an extensive workup. I think it could be the key to making living a chronic pain life more bearable.
Em & Kate says
It was a huge help for me & it took a lot of ease off of my mind to know exactly what was going on!
Teresa Sullivan says
Can you give a ballpark figure (as I know it will differ for each person) of what the cost was for all these tests? $50k, $10k, $100k? Just somewhere to start. Also, how are they when it comes to dealing with insurance companies?