Mayo Clinic POTS Clinic experience

Mayo Clinic Day 3

Yay! I am done with all of my testing! I have to say all of the stuff all of you have written encouraging me really helped out. Today was the Tilt Table Test — the test I have been dreading all week.

Tilt Table Test

POTS stands for Postural Orthostatic Tachycardia Syndrome, if you break this down it is easy to understand the main symptom. When I stand up, my heart rate goes crazy, like I smoked some crack or something (not that I’d know). One way they test to see if you have POTS is to put you on a table, tilt you to 70 degrees, and measure your blood pressure and pulse.

I couldn’t eat or drink after midnight for this test. It was at 11:30. I woke up pretty tired because all night I had that stupid blood pressure cuff going off every 10 minutes. It was very loud and squeezed tight because it is hard to get my blood pressure due to my heart beating abnormally. I made a DELICIOUS gluten free, dairy free, soy free, egg free roast beef and mozzarella sandwich for after the test. Off to the test site we went…

Here is my mom and I waiting to be called back for the test.

My mom and I waiting to be called back for my tilt table test…

They got me back pretty quickly. Once back there, I needed to get an IV in so they could rehydrate me and inject me with some adrenaline type stuff later on in the test. The reason they wanted me dehydrated is because it causes my blood volume to lower which in turn makes me more symptomatic. The guy hit one of my valves and was digging around in my vein (eek!) so he had to use the other arm. He left a pretty decent bruise. The great thing is a didn’t even feel it because in this wing the inject you with lidocaine prior to sticking in the IV. I don’t really mind needles, but I am a fan of the lidocaine!

By now it was about noon. I began realizing I would not get to eat after my test. I was having an exercise test at 3:30 that I could not eat for 3 hours prior! I was pretty irritated at this, I’m not going to lie! This friendly nurse here then told me that they would be tilting me up for 45 minutes no matter what my symptoms are, short of passing out. After that they would be injecting me with an adrenaline like substance that would increase my heart rate to see how my heart would respond. Greattt!

a very awesome nurse — I love my Dad smiling there in the background 🙂

Here is a very worried Jake and my Dad prior to them taking me back…

a very worried Jake prior to my tilt table test
my dad and I prior to my tilt table test

Then they took me back before I knew it. They hooked a bunch of heart monitors to my chest and sides. They then put my arm out to my side with a blood pressure cuff on the fingers on that arm and another blood pressure cuff on the other arm. They also covered my arm with hot blankets to keep it nice and warm so the blood pressure cuffs on my fingers would work. Next, I got strapped down the table and they tilted me up to 70 degrees! It is quite a sight.

Me during the tilt table test!

A nurse sat right across from me and we just kind of stared at each other for 45 minutes. It was as terrible as expected, but I made it! My heart rate went from around 78 to 120. This makes me nauseous, dizzy, and like I wanted a nap. To give you a reference, a normal girl my age, weight, and height would probably have a starting pulse of 60 and it would go up to no higher than 75. After this part of the test was over, I was very happy because the lady told me my pulse is so impressively high, that we didn’t have to do the adrenaline part because it would have made my pulse like 150. Yay!
After this I had a 2 hour break. I kept threatening to make a break for the kitchen and eat my sandwich, but Jake told me he would tell on me to my parents so I didn’t.

Exercise Test

The purpose of this test was to see how my breathing/oxygen levels and blood pressure respond to exercise. I had a bunch of electrodes attached to me for the second time that day. They put this crazy looking mask (wish I had gotten a picture) on me that would measure the amount of oxygen I was exhaling. Since I was dizzy and sick from the Tilt Table Test, they let me pedal on a bike rather than walk on a treadmill. I used to do P90X like a boss and have a high endurance level. I was so embarrassed to only get on the 5th most difficult tension level before I had to quit this test. The nurse assured me it was clear from my results I was working hard and that most people with POTS have a hard time doing it after the Tilt Table Test.

After the test, we weren’t even to the elevators before I had my sandwich out and was chowing down. I ate a sandwich on the way to Outback Steakhouse and then ate half of a steak as big as my head! When we got back, my Mom and I had some quality girl time in the hot tub. She was lecturing this little Indian girl about the dangers of having long hair and swimming near hot tub drains. It was nice to be able to go and do something fun!

Tomorrow I get to start hearing my results for all of these tortuous tests. I cannot wait and I know it’ll make it all worthwhile when I am hearing all of the things I can do to help myself get better. Thanks again for reading and all of the encouraging comments. Please leave more, they kept me going all day!!

— Jackie

14 thoughts on “Mayo Clinic Day 3

  1. Wow! Quite a day to say the least. Love these pictures with your beautiful smile. I conitnue to be amazed by you! Will be praying for you tomorrow as you learn the results of all these tests.

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  2. I’m so happy youre done! Great job being so tough! I love you and miss you!

    P.S. I cracked up when I read about mom lecturing the Indian girl about long hair and hot tub drains – I was just telling Jon Saturday about those lectures!

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  3. Yay! You made it! Hope you get some good news about treatment. We need a life coach. That poor little girl- enduring your mother’s lecture. Although, what if she saved her life….

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  4. Been thinking of you all day. Glad you are finished with testing. Anxious to hear about your results. Keeping you in my prayers. Love you!

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  5. Jackie, I’m so glad you’ve made it to the end of all these tests!!!!!!! but now as glad as you, I’m sure!!!!!!!!!!! Good you have your mom and dad and Jake there giving you support! Let’s hope treatment is easier on you than the testing! eek! Hugs Suzy and Delby 🙂

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  6. Yay the torture is finally over……now for the payoff right? Hoping you get some good answers and that your time there is less difficult for you now 🙂

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  7. Ugh. I will be going to Mayo Clinic soon (recently referred, hard to say how long “soon” will be) for a similar condition. Just reading about an exercise test after a tilt table test sounds like ignorance on the physician’s part. Then I got to the end of the post and realized that they organized that on purpose. Cruel joke. Any fasting is also cruel for me as I have fickle blood sugar levels and have a lot to do with my dizziness. In past tests I’ve taken advantage of my gastroparesis and purposely had steak and salad late at night so I’d be full all the next day. Painful, yes, but I don’t see the point of failing a tilt table test because of blood sugar instead of a junctional rhythm…which shouldn’t even make me pass out considering my heart rate and blood pressure barely change when it happens.

    Sorry for the rant 🙂 I relate to this too much.

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    1. Your rant doesn’t require any apologies! In fact, it is welcome. I am sorry you are ill and dealing with so much.

      The Autonomic Clinic at Mayo is very much TORTURE, but totally worth it. It feels good knowing I had not only all of the most up to date testing, but that the testing was run properly. Also, post-Mayo, doctors tend to take me much more seriously right of the bat because Mayo has such a reputation for both “medical excellence” and rare diseases.

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