POTS update July 2013

I shared previously (see here) about my visit in June to Dr. Naeem Tahirkili in Oklahoma City, the changes he made in my medications, and how after the first few days I was already doing very well. With over a month under my belt since that visit, and after a followup appointment, it is time to post another update — and another very good one!

I have kept a journal of my physical condition for the past year, detailing the medications I have taken, how I have responded, what kind of day it was, ups and downs, etc. But for the past month, there has only been one type of entry: “GOOD DAY”, “GOOD DAY”, “GOOD DAY” … one after another. In fact, I have suspended my daily journal for the time being, since it is becoming very repetitious! With the elimination of Trazodone, my former sleeping med, and the increased dose of Florinef the doctor recommended, for the past month I have been basically asymptomatic — it has been as though I have not even been sick at all!

Dr. Tahirkili told me to exercise as much as I felt like, and for the past month I have exercised a lot — usually 3 times a day. I increased my morning prayer walk to 3-4 miles a day. During the afternoon I have played golf or tennis in 90-degree heat, and have done fine with it. I have also alternated swimming during the afternoons as well. Then in the evening I generally walk almost another 2 miles. I have felt great and have suffered no ill-effects from the exercise. The only difficulties I have felt have been with my feet, which have been very sore — understandable since they have not had much use during the past year when I was basically on my back all day with POTS. Of note, I have observed that my heart rate when I am walking is a tad lower when a cool front has come through: instead of 110-115, it will be 100-105 when it is cool. My heart rate has been 130-140 while playing tennis in 90+ degree heat, and I’ve had to take a few breaks — but I don’t think that is out of line for a 54-year-old in that heat!

I also had the opportunity to lead Wednesday Evening Bible Study at the church where we are now members, Trinity Baptist in Norman. This was a significant event for me, because it was almost 18 months ago, in February 2012, that I first got sick while standing to lead prayer meeting at my former church, FBC Moss Bluff, LA. I then spent most of the next year on medical leave before stepping down to allow the church to call a healthy pastor. I am pleased to report that I stood to lead prayer and Bible study for a solid hour that night last week at Trinity, and had no physical problems whatsoever. (For the record: my heart rate was between 110-120 while leading the meeting.) Cheryl & I celebrated with banana splits at Braums after church that night (we also went to choir practice afterwards), because I felt like the Lord had now brought me full circle: from being unable to finish the meeting in February 2012, to being able to complete it with no problems last week. A significant milestone!

One of the few problems I have continued to deal with has been lack of sleep. Sleep deprivation is a common symptom of POTS, and though the Trazodone had helped with that for the last year, Dr. Tahirkili had advised me that it actually exacerbated POTS symptoms, and we needed to take that out of my regimen. My concern was that I would not sleep at all without it. “Dr. T” had half-joked in response: “You will sleep eventually!” Well, it was a rough road for a few weeks. I followed the practices that aid sleep which he had given me, but none of them seemed to help. Rather than being frustrated by my inability to sleep, I decided to try to embrace it, and use the time for study, or reading. I waded all the way through Victor Hugo’s classic, Les Miserables — 1400 pages! — during that time. It was the only POTS symptom which had seemed to persist. But about 4 days before I returned to the doctor’s office, something happened: I slept through a night, then 2, 3, and then 4 straight nights! I slept anywhere from 11-5 to 10-6. I have since had some varying better and worse nights’ sleep, but I am thankful to report that even this persistent symptom is now showing signs of passing.

The bottom line is, that for the past 6 weeks, I have been basically free from symptoms of POTS. If I did not know that I had it, I would not think I was sick at all. I have been able to do whatever I have wanted to do: walk, play golf, tennis, swim, load boxes into the kids’ moving truck for 3 hours at a time — anything! I am very grateful for the recuperation God has granted me.

The doctor was obviously pleased with this report (he was not quite as happy with the cholesterol level he saw in my blood work, but that is another story … 😉 His stated goal at the previous appointment had been for me to be able to do anything I wanted to do, and to be able to work again if I wanted to. As he left the exam room after my report, he asked me if I planned to work again: I told him, absolutely!

So what’s next? Right now I am scheduled to do some more pulpit supply, this time both a morning and an evening service on Sunday, August 4th at my former pastorate, Living Oaks Baptist, in Tulsa. This will be another “milestone test”, as it will be my first time to preach twice in one day since my recuperation. Then it will be “watch and see” what God has for us. The word I have gotten from my devotional readings over the past weeks has been “wait on the Lord” — I must have read that phrase countless times over the past weeks. So I want to purpose not to try to “fabricate” anything on my own, but to wait on what God has for us next. I have trusted throughout this whole POTS episode that He has a purpose for everything He brings us through (see my message on this here), so I am confident that whatever it is, it will be good, it will advance His kingdom and it will glorify Him. I hope that my friends will pray with me that He will make that direction clear in His time, and that I would recognize it when it comes.

Unless I have some “bumps in the road” or other significant news, this may be my last POTS article for some time. As with all my posts on dysautonomia or POTS, I hope that this article might be of some help to others who are dealing with the illness. POTS manifests itself differently in different people, and what helps one person does not necessarily work for another. But I have recorded my experiences during the past year in hopes that it might give some direction to others who are struggling with this still very mysterious syndrome.

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About Shawn Thomas

My blog, shawnethomas.com, provides brief devotions from own personal daily Bible reading, as well as some of my sermons, book reviews, and family life experiences.
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2 Responses to POTS update July 2013

  1. Susan Gordon says:

    Well, what can you say but..PRAISE THE LORD!!! Your daily posts sometimes seem as though you are in “my head” and in my Sunday School class!!! At times the Monday devo would quote the exact same passage we were in the day before in class. Praying that POTS decreases while GOD increases IN YOU!!! You are an amazing faithful servant of our God!

  2. Jasmine says:

    Hello, I am new to your blog. I myself have pots. I was wondering what medications are you taking? Your recovery sounds amazing! I want to start taking medications to start feeling like normal. God is good! Thank you.

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