My First Mayo Clinic Experience

What a world it was to walk into Mayo Clinic, coming from small town Idaho. The place is bigger than my elementary, middle, and high school (all of which are in ONE building). Even just based upon appearance I immediately felt confidence in the facility. However, this place was huge, and upon first stepping in, it should have been very over whelming, yet there were people to help everywhere you looked. We walked up to one of the help centers and someone kindly gave us exact directions to get to where we needed to go.

My first appointment was just a scheduled time to be there and register. Meaning, give them my insurance card, drivers license, that appointment was at 7 am and my next was at 9:30 so we went back to the hotel, and I power napped. I was fasting so I was cranky.

Back to the clinic for my 9:30 appointment, this was the real deal appointment. I was lucky enough to be placed in the care of one of the top neurologists in the country. I didn’t know much about Dr. Goodman going in, Other than the fact that he knows his stuff.

He walked into the room at 9:29, and did the interview and exam 100% by himself. He was thorough and you could tell just by watching him how brilliant he is.

I have dealt with a lot of doctors over the last 10 years and I have grown to realize that the good specialists are the ones that quietly stew in their brain and don’t have time for chit chat. However, I was pleasantly supported by Dr. Goodman’s bed side manner.

Dr. Goodman is a kind and brilliant man, and from the moment I met him, I had all the confidence in the world in him.

He did his exam and then sat and had a conversation with me. He asked “first I want to know about you, what do you want out of this visit?” I simply stated “I want to be 24 years old and feel like I’m 24 years old, and I will do whatever it takes to get closer to that.”

He said “alright, I’ll tell you what I see but first I want you to hear me say that I am validating your symptoms and I see clinical proof that something is going on.”

There aren’t words to properly explain the validation he gave me in that moment. For 10 years I have been kindly (and sometimes not so kindly) told that I’m crazy, that my symptoms are clinical manifestations of mental disorders. I have been told I have depression, ADD, bi-polar disorder, PTSD and flat out told I’m a hypochondriac. When you are told all the time that you are crazy, it is damn hard not to believe it. I have been on 4 different types of antidepressants. When I flew to Phoenix I was on three different antidepressants, and honestly thought that would be my life forever. (Happy to report that I have successfully transitioned off of one, and will begin working on the other two).

Anyways, following that appointment I had to continue to fast until another appointment at 2:30. This appointment was the reason for fasting. This appointment was an appointment for a pretty big test, it took about two hours. This was a test to test my Autonomic Nervous system, so my sweat and hormonal responses to certain stimuli. I was strapped to a table and first they tested my sweat response by putting sensors on my skin, adding some acetylcholine (neurotransmitter) and then conducting electrical stimulation to the area to see if I would sweat. Not going to sugar coat it here, that test was a bit uncomfortable, but it was quick and honestly I would take days of getting electrocuted if it meant someone would give me answers. Next I did some big in hales and exhales timed with a machine, then I did a forced exhale with back pressure again timed with a machine, and the final test was a tilt table test. If you aren’t familiar with a tilt table test, basically you are just secured to the table and they take you from laying to standing and measure you vitals. Super easy, and very routine diagnosis for POTS.

After that I was done for the day, it was about 4 pm and I was finally able to eat and have a bit of caffeine. We took the rest of the day to explore the area and then had dinner at Whole Foods (a health fanatics dream land). And then headed back to the hotel for some sleep.

The next morning my appointment was at 9 am. This was just a lab appointment to get some blood draws, and by some, I mean a lot. Following the blood test I could drink little bits of water, but needed to remain fasted for another test at noon. This test was to determine my vital signs and hormonal responses to stimulus. This one was pretty easy, I got to sleep for 30 minutes and then I stood for 10 minutes. My vital signs were measured and blood was drawn at each step (yes day 2 consisted of a lot of blood loss). Following that test I was allowed to eat, and most importantly have some coffee. My sweet nurse had heard me say earlier how the worst part of fasting was no coffee, so they had coffee waiting for me as soon as my test was complete.

The last thing to do that day was get my holter monitor on for the next 24 hours.

I am in the middle of, and was also at the time in the middle of, doing a big fitness program so I asked if I was allowed to workout with the holter on, they said “You can do anything you want to but we don’t want you to sweat.” Perfect, I don’t sweat anyways!

We went back to the hotel, I got my workout in for the day, and then we headed out to find a trail to hike. I was not about to let the beauty of Arizona go to waste, so we hiked (slowly, because I was seriously lacking blood volume). And then back to Whole Foods for some dinner.

Day 3: The only thing on my agenda was to start my 24 hour urine test, and drop off my holter monitor. So this day we were pretty much free to explore Phoenix. One of my best friends happened to be in Phoenix at the same time we were, so we met her and her family at the zoo. It was a perfect last full day in Phoenix.

Day 4: I just had to drop off my urine and then head to the airport.

Leaving Phoenix was tough. I became so attached to the city. It is the place leading me to answers, and I loved the sun. I honestly didn’t want to leave, but I left knowing with all my heart that we would be back.

Right now I still don’t have the answers, because I have to go back for a follow up to get those answers (like I said, I knew we would be back). However, even without answers; my heart is so at peace. I feel empowered by my limitations, and validated in the fact that those limitations are real.

So I guess for now, this is all I have until my next trip to Phoenix. But, I do want to say; if you are struggling with something, or you are not getting the answers or help you deserve, I HIGHLY encourage you to reach out to the Mayo Clinic network. They are amazing, and they will help.

Exercising through exercise intolerance?

“Exercise intolerance” sounds like something someone would make up in order to get out of working out. “I can’t I have exercise intolerance.” But it is legitimately one of the symptoms of POTS.

So what does that mean? It means that my body, literally displays every message to me that I should rest. I get dizzy when I exercise, my heart rate gets out of control, and I get pale and sweaty. UNTIL I get over the hump?

I think everyone can relate to that place in exercise where you start and you don’t want to be there, but then you get past it and you’re super motivated and everything is smooth sailing.

Well for someone with POTS, you may literally feel like exercise could kill you that day, but then you push play and your blood starts to flow and your heart rate normalizes, and the effects of exercise last long after exercise itself. For most people that is a good thing because calorie burn, weight loss, increased metabolism, and all that. But, for a person with POTS that is a great thing because, that means lessened symptoms for a bit of time.

The best form of exercise for people with POTS is low impact exercises in which you can do at your own pace. So, although taking a cycling class may seem like the most popular form of exercise and something everyone should do, a person with POTS should probably steer clear of a cycling class, instead maybe design your own cycling workout and pause when you need to!

I have found that the best form of exercise for me personally is weight lifting. It increases blood flow to every area of my body, increases heart rate slowly, but does not create a dramatic spike, and increases muscle mass which should overall increase blood circulation. I have also found yoga and pilates to be good “POTS approved” workouts. Stretching and foam rolling are also also excellent ways to increase circulation and can be added on after a workout, or stand alone as your activity for the day.

At the end of the day the most important thing you can learn to do is listen to your body. Know what is beneficial and what is harmful to you as an individual, and what works best for your body. This goes for everyone, whether you have POTS or not.

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