My POTS experience: Peaks and Valleys

Although POTS (Postural Orthostatic Tachycardia Syndrome) varies greatly from individual to individual in the type and severity of symptoms, one of the signature features of it in my own personal experience is the almost daily fluctuation of my symptoms. Journeying with POTS is like traveling in the mountains: a continual series of peaks and valleys.

I have learned this over time, through my own experience. Trying to make sense of what is going on in my body, and wanting to record how I have responded to various treatment options, I have kept a daily “diary” of sorts for some months on my iPad. Over time I have developed a very simple system. I write the day and date, and beside it a “headline” which is easy to read which summarizes the day. Then underneath the heading I jot a few sentences describing some of the details of that day. For example, I might make the heading:
“Monday, February 18 MEDIOCRE/BAD DAY.”
Then just underneath it I might write:
“Dry heaves when I tried to get up, had to stay in bed and munch on crackers. Wasn’t able to get up until about 10. Tried to recumbent bike afternoon but got sick after 7 minutes. Was able to sit and read later for 20 minutes before getting sick. Not the worst day, but pretty bad — not able to do much.” (etc., etc.)

By doing this for a series of weeks, I have been able to glance down the “headlines” and identify some “patterns” of sorts in my POTS experience. One of the things I have noticed is the almost daily variation in the intensity of my symptoms. Sometimes I will have a couple of days which are similar, but it is not rare for my symptoms to vary in intensity by the day. In fact, I have often seen what looks like a series of “Bell curves” in my symptoms: my condition gradually changes from worse to better to worse again (peaks to valleys) over the course of a few days.

For example: on my worst days I will make the notation that it was a “HORRIBLE/STAY IN BED DAY.” This might last for 1-2 days. Then I will have a day that is “NOT AS BAD.” The next one might be only “MEDIOCRE BAD” and then perhaps “MEDIOCRE”. It would not be unusual for the next to be “BETTER” or maybe finally a “PRETTY GOOD DAY” — or even two! (NOTE: “pretty good day” for me means I can stand upright or walk for 7-8 minutes before I get sick, instead of 10-20 seconds!) But then the “curve” inevitably begins to plunge downward: from “NOT AS GOOD”, to “MEDIOCRE BAD” or sometimes just precipitously falling to another “HORRIBLE” day.

And so it continues, roughly following some type of continual curve pattern, in a series of “peaks” and “valleys.” Sometimes it seems like I can identify a “trigger” — whether it was an attempt at exercise, or a weather front which was moving through — but it is not, in my experience at least, an exact pattern. Sometimes it is predictable enough to gauge whether I may be up for a visit or a doctor’s appointment in a day or two. But it is not an exact enough science for me to predict with any great accuracy.

I think that understanding these continual fluctuations is important for both the POTS patient, as well as for their friends and acquaintances. Two or three times over the past year that I have had POTS, I have had stretches of 2-3 days when I felt better, and I actually thought I might be “getting well”! But these “peaks” were soon followed by “valleys.” I soon learned not to get my hopes too high on those “better” days.

It is important for our friends to realize this too. Over the past year, a number of my acquaintances, unaware of these constant fluctuations, have mistaken a “not so bad” or “better” day for permanent improvement. They might say something like, “I saw you were out walking a bit” or “I saw you were at church — I am glad to see that you are improving!” Well, I was not “improving”, I was just on a “peak” that particular day — there was another “valley” coming in a day or at most two!

If you are a friend of someone who has POTS, I hope this will help you to recognize what is going on with your loved one. Realize that if they are having a “peak” or “valley” day today, they may not be the same tomorrow. Just be their friend regardless! Proverbs 17:17 says “A friend loves at all times, and a brother is born for adversity.” Your friend with POTS is enduring great adversity: a frustrating and seemingly endless series of all-too-rare peaks and very devastating valleys. They desperately need the love and understanding of a faithful friend.

And if you are the POTS patient, I hope this article might help you to recognize what is going on with your symptoms. Your specific patterns may be similar to mine, or they may be entirely different. But if you have not done so already, it might help you to recognize some patterns in your own particular condition if you recorded daily symptoms in a similar fashion to what I have described. These notes can also serve several other useful purposes: I use my notes to report to my doctor on my next visit — and these same notes were very helpful when I was putting together my disability application, as I could give very detailed descriptions of things which had happened: dates, conditions, etc. Having these written notes is especially important because my memory is often not as sharp as it was before POTS, and I would not have remembered many of those important details had they not been recorded.

SO: are you a POTS patient having a “peak” day? Don’t take it for granted! One of the things POTS has done for me is given me a newfound appreciation for things which many people take for granted: like being able to walk any distance, or standing and talking to people, or reading a book or surfing the web or blogging without getting sick. If you are having a “peak” day, give thanks to God for what you are able to enjoy that day! And should you find yourself in a “valley”, don’t despair — Lord willing there should be another “peak” coming your way very soon!

Climbing those “peaks” and “valleys” with you!

Shawn

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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6 Responses to My POTS experience: Peaks and Valleys

  1. Towanna says:

    Praying for you and your family!! Even when you move I pray you will continue your Blog.

  2. Great post! Do you have a specific app you use on your iPad or just the Notes. I have been trying to think of how I can do something for tracking actions and reactions, doctor visits, medical bills and research for POTS etc.
    I usually have a system of order so that I don’t feel this disorganized and in such chaos but I’m on new ground here. I do have the POTS brain occasionally so feeling this out of control is a source of stress for me. A journal, I think, is going to help! Thanks for the idea!

  3. Shawn Thomas says:

    Heather, I just use Apple’s Pages word processor on my iPad. I was doing sermons on it so I just starting using it for this. There may be something better but I am far from a technophile! (If anyone out there would like to suggest a better option, some of us might like to hear it.) “POTS brain” is a good term; I may have to borrow that! I just know if I didn’t write some of these things down, I wouldn’t remember a fraction of them — same thing with our moving “to-do” list right now. You are very welcome, and hope it helps!

  4. Craig Vire says:

    Hi Shawn. Ran across your blog while doing some online reseach about the omnipotence of God. Enjoyed your message. I’ve been following your POTS jouney and wanted you to know that I am praying for you as you make this journey. Wish you all the best.

    • Shawn Thomas says:

      Hey Craig; good to hear from you! I enjoyed doing that series on the attributes of God, but I don’t know that I’ve ever felt as inadequate for a task in my life. So humbling. Thanks so much for your prayers — we definitely need them. Cheryl & I still you of you all often — so many memories of you and Clay from seminary! And I still breathe a prayer for each of you as you minister on Sunday mornings.

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