Just a "zebra" trying my best to live life to the fullest with EDS and POTS...and loving the ride.

A POTSy Day in Toledo

Written by Katie. Posted in POTS Appointments, POTS Awareness

Two weeks ago I returned to the University of Toledo’s Heart and Vascular Center for my POTS follow-up.  When I had gone for my first appointment, I saw Bev (Dr. Karabin) and got on a specific treatment plan.  Three months later, I followed up with the famous, Dr. Grubb.  This time around, it was my turn to see Bev again. 

Because Brad was taking me three days later to see Dr. Lavallee in South Bend, my Dad took me to this appointment.  When we got there, it was quite the wait.  We sat for 3 hours before Bev was able to join us.  I just kept thinking that this was par for the course when you choose to see the experts.  Plus, from my other two appointments, I knew that she would spend as much time with me as I needed.  That, in itself makes the whole trip worth it.

What made the wait actually enjoyable was that I finally got to meet my friend, Steph, who also battles POTS and most likely EDS.  We had about an hour to chat in the waiting room, until I was called back to a room.  It was so refreshing to talk to someone who just gets it…who speaks the same language.  After emailing back and forth, I was so appreciative that Steph made the face-to-face visit happen.

When Bev came in, she greeted me with a warm hug and asked me to update her on what has been going on in my life.  Talking to Bev is like talking to an old friend.  She has such an easy-going, calming way about her.   Since it had been 9 months since I had seen her last, there was a lot to update her on.  When I had seen her last April, I was in pretty bad shape.  The look on her face when I told her I was back to work part-time was probably the most memorable part of my appointment.  She just beamed with pride.

We continued to talk Propranalol, Midodrine, my blood pressure, brain fog, exercise, rest, family planning and options, salt, lights, fluids, stimulants, and an invisible illness campaign that is in the works…

Here are the most important things I took away from my appointment:

1.  I am to continue taking the Propranalol daily since it’s seems to be doing its job of lowering my heart rate.

2.  I asked about Midodrine.  I have been struggling with how I can take Midodrine 3 times a day, if I’m not allowed to lay down on it, but I feel the need to lay down and nap after work everyday.  Since my blood pressure has been good in the mornings, but super low in the afternoons, Bev thinks my Midodrine is wearing off, which is why my blood pressure plummets.  She wants me to experiment with taking a Midodrine and then laying down, while taking my blood pressure every half hour (since the danger of laying down on Midodrine is that my blood pressure could go too high).  Bev also changed when I take it.  Instead of taking it at 8 and noon, she now wants me to take it at 8 and 11 to see if I feel a better lasting effect.

3.  After talking about how I struggle so much with fatigue and brain fog, Bev explained that she and Dr. Grubb are realizing that stimulants are really helping a lot of POTS people function better.  She told me that she would probably choose Adderall for me to try if I wanted.  She explained that Midodrine is like a stimulant for the rest of my body that helps the blood get to where it needs to go, while the Adderall would be a stimulant that would help me focus, and hopefully help alleviate the slurring, brain fog, and inability to think that I experience when I feel sick and POTSy.  I told Bev that I wanted to play with the Midodrine first, to see if that helped, before I tried another med.  She agreed that that was a good plan, but that we will keep it as an option if I decide I want to try it.  Honestly, I would like to avoid going on another med if I can help it, but if it can improve the quality and functionality of my life, then I will keep an open mind about trying it.  I just don’t feel like now is the right time.

4.  Bev described my POTS condition as stable for now.  I asked if there is such a thing as a “remission” and she said there most certainly is, and she will continue to hope for that for me.  She reminded me to drink 2-3 liters of fluids a day and to eat 3-5 grams of salt a day (after I told her I pee like every 2 minutes).

5.  She was extremely interested in how I was doing with exercise.  I told her that it has taken a lot of time and energy and setbacks, but I am continuing to strengthen and do cardio 3 times a week.  I explained that I now walk on the treadmill or do the elliptical on good days, and I do the recumbent bike on bad days.  We were actually talking about exercise when she was examining me, and listening to my heart.  She felt my legs and said, “Holy cow, woman. You’ve been working!”  I told her I have been trying hard, and this is when she pointed to my legs and said, “The strength you have in those legs is the biggest factor as to why you are keeping stable.”  She stressed how important it was for me to keep the strength in my legs and core, in order to continue fighting POTS.

6.  I told Bev that this may make me sound crazy, but bright lights seem to make me extra POTSy.  I explained that in my classroom I have had to light the room with floor lamps because the fluorescent lights make me sick.  I also told her that certain stores with super bright lights also make me sick, like DSW and Meijers.  She told me, NO, I am not crazy, and that fluorescent lights have a definite effect on many POTS people because they are too stimulating for an Autonomic Nervous System that is already out of whack.  I love not feeling crazy.

7.  Basically, Bev told me to continue doing what I am doing…The water, meds, salt, exercise, manipulation treatments, and naps, and that hopefully I will continue to improve.

8.  The last thing we discussed was an invisible illness campaign that Steph is getting going with the help of Bev and Dr. Grubb.  Hopefully it will happen in the spring.  I signed myself up to help in any way that I can.  Awareness about this crazy disease is so, incredibly important to me.

I am realizing more and more that having POTS is hard work.  I am finding that it is a disease that I can never take a break from.  I feel like since I have been able to wrap my mind around that fact, I have been able to better accept POTS into my life.  It has just had to become a way of life.

I will be returning in 6 months to see Dr. Grubb.  Hopefully by then, I will have accomplished even more of my goals.  Until then, I will do my best to keep on, keepin’ on.

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