My Experience at the Mayo Clinic for POTS
Background on the Mayo Clinic & POTS
The Mayo Clinic is known for their POTS specialists, so many patients go there seeking answers and better treatment plas. My visit to the Mayo Clinic was in April of this year (2017). They definitely are very knowledgeable about POTS, but don’t go there seeking to find a cure (there isn’t one, haha!).
The way the Mayo Clinic works is that you apply to go there through their website. They review your application and decide whether or not they think they can help you. If you are accepted, you will go there (Rochester, Minnesota), and have back-to-back appointments and testing for a solid week.
Luckily, I was accepted and got to go just a few months later. I know the wait time can be up to one year. My mom was able to move my appointment up by persistently calling everyday asking for openings.
My Trip to the Mayo Clinic
Before I went, I had started taking Propranolol, a beta blocker, and it had helped me quite a bit. I had to go off of all medicines while I was at the Mayo Clinic, which was super tough. Walking was tough, so my mom pushed me in a wheelchair for part of the time.
The Mayo Clinic is HUGE. Both me and my parents were super impressed with it. There are buildings all over Rochester...it’s basically the medical capital of the world. At the beginning of the week, you’ll have a consultation with a doctor, and based on their findings, they will order a bunch of tests.
It’s really nice because they do all the tests at once, and you don’t have to wait for the results. If you download the app, the results will come in as they become available.
You will probably have some of the strangest medical tests you’ve ever had. The Mayo Clinic is one of about 3 hospitals in the USA that has extensive autonomic testing.
They did a test called the “sweat test” on me where they cover your whole body in purple powder and put you into a chamber that continues to heat up until you sweat. The powder shows where and how quickly you start to sweat. This tests for certain types of POTS and autonomic disorders. I believe it was classified as a “neuropathy” test.
They also did several types of Tilt Table Tests (TTT) on me, which is the gold standard for POTS diagnosis. One of them was very neuropathy focused, and the other was a traditional tilt test.
Neither of those tests are fun. They last for about 1 hour, and if you do have POTS, standing for 1hr straight while being off medicine is not enjoyable. But if you do pass out, you are strapped to the table (thankfully).
I had dozens of blood tests and quite extensive heart testing as well. There is an endocrine test they do to see if you have Hyperadrenergic POTS. They take a blood sample, have you lay in a dark room for 30 minutes, then they have you walk around for 10 minutes. They then take another blood sample and compare the results. I tested positive for this kind of POTS, and negative for the neuropathic kind.
They have you meet with a POTS lifestyle coach (or something similar), which can be helpful for those that aren’t familiar with POTS.
Was it worth it to go to Mayo?
Yes, I definitely would say the trip to Mayo was worth it. They confirmed my POTS diagnosis, and it was comforting to be in such good hands.
I won't say I wasn't disappointed that they didn't have a better answer/solution for me, but I definitely am glad that I went.
Though the week wasn't necessarily enjoyable, it was important because we made sure I had the correct diagnosis.
I saw Dr. Coon in neurology, and I highly recommend her. She has seen hundreds of POTS patients, and is very attentive to all of your concerns. She spends as much time as needed with all of her patients.
Should you go to Mayo?
When I went to Mayo I had already been diagnosed with POTS in Salt Lake City, Utah. My parents were both concerned that there was another underlying condition that was causing my POTS.
If you are concerned about that as well, consider going to Mayo.
If there is something else going on with you, they are more likely to find it than any other doctor you could go to. “Leave no stone unturned” is their motto. If there is a condition you think you may have, or are concerned about, they listen to you and are willing to test for it. It is also great because of how fast you get results from your testing done.
If you are concerned you have POTS, but are having trouble getting a diagnosis, consider going to Mayo.
The Mayo Clinic is very familiar with POTS, and has doctors that see hundreds of patients with it. If you have it, they will be able to diagnose you, and find a treatment plan that will likely help you.
If anyone has any thoughts about or experiences with the Mayo Clinic, please comment below.