I was diagnosed with dysautonomia, or POTS (Postural Orthostatic Tachycardia Syndrome) a couple of weeks ago (June 2012).  Since this may be a part of my life from this time forward, and a number of my blog posts will refer to it, I thought it might be helpful to introduce my experience with POTS – especially since many people are not familiar with it — indeed many doctors and medical professionals are not!  I also hope that reading about my experience might help others who are dealing with the syndrome.

The Onset 

For a couple of years I had been told that I did not seem to be “well.”  I also noticed that I had become increasingly tired after a Sunday of preaching.  I had chalked it up to age, as I turned 53 this June, and to the rigors of preaching, which is infamous for causing fatigue.  But one day this winter things took a more dramatic turn.

I had been to our church’s Wednesday evening dinner with my wife Cheryl, and had been standing for some time, as I had made a specific effort to visit with as many people as I could.  I then went to prayer meeting, where I stood to lead the singing, and continued to stand while I led a Bible study, and then was standing for the prayer time too.  But as the service progressed, I began to feel woozy and weak.  I did not want to make a “scene” and leave, but I was afraid that I might pass out, which would be worse, so during a break in the prayer time I quietly slipped over to our associate pastor, and whispered that I did not feel well, and left.  This was my first “major” incident with what I would come to know as POTS.

Tests & Diagnosis

That incident precipitated a visit to a respected internal medicine doctor in our area.  I told him what had happened at the prayer meeting, as well as the other symptoms I had been experiencing: wooziness and lighteadedness, strong headaches accompanied by a slight nausea and often by a tingling on the right side of my face, a variety of chest and abdominal pains, a shakiness that varied in its intensity, what felt like palpitations of my heart, night sweats, and especially an overwhelming fatigue.  I was also having difficulty sleeping, which I did not realize at the time is also typical of this syndrome.  The doctor said that these symptoms could have a variety of causes, and we would have to run some tests. 

One of the first tests he had me take was a tilt table test.  In that procedure, they strap you to a table, and measure your pulse and blood pressure for about five minutes while you are lying flat.  Then they elevate the table (and you!) up to a standing position, and continue to monitor your vital signs for another 30-40 minutes.  The results of the test were striking: lying down, my blood pressure was pretty much perfect: 120/70, and my pulse was in the upper 60’s.  Very healthy.  But as soon as I was raised to a standing position, my blood pressure dropped 15 points, and my pulse increased to compensate for it.  Over time my blood pressure dropped to around 88/60, and my pulse was close to 100.  I began to get that same weak, dizzy feeling I had experienced during prayer meeting.  The longer I stood, the lower my blood pressure dropped, and the higher my pulse went.  WHY this was happening, we did not know.  At this point I was glad that there was at least something “concrete” that was wrong with me – I had been afraid it was just “stress”, or that they would not be able to identify any particular cause.  At least this was something you could put your finger on – whatever it was!

I might add here that since the time of that tilt table test (late winter/early spring) my heart rate when I stand has worsened.  At the present it is not uncommon for it to rise from 70 or 80 while sitting, to 120-130 or even 140 beats a minute a few seconds after I stand — just walking to the kitchen to get a drink, or brushing my teeth.  That is a good exercise heart rate — in effect, it is like running in place the whole time I stand — no wonder the exhaustion and other symptoms!  I don’t know if the tilt table test caught this syndrome in the early stages, and it has worsened, or what, but my heart rate is always well over 100 whenever I stand these days.  And when I do, that “carsick” headache I have intensifies – evidently, I have read, as a result of blood pooling in my legs, and my body not circulating that blood back well enough.  Thus there is a lack of blood to the brain, which results in the headaches, memory loss, etc. which characterizes POTS.

My doctor continued to order more tests, but most of them came back very normal: blood sugar, MRI, blood tests, etc.  A LOT of things were ruled out, but nothing positive was indicated.  Many of my symptoms were indicative of adrenal failure – and to me this made sense, since I have been preaching for almost 30 years, which certainly gets the adrenaline going, and pastoring can be a high-stress occupation.  But my adrenal/cortisol test results were normal.  So our doctor started to talk with us about going to Houston, where there are a number of specialists and diagnosticians. 

In the mean time, a medical professional from our church who had heard about my symptoms had done some research, and told me that it sounded like I had POTS.  I had actually briefly looked at POTS while doing a symptom search on the internet a few days before, but didn’t have much confidence in my own diagnosis.  But since a person with a medical background suggested this, I began to look at it again more carefully, and the more I read about it, the more I saw that the symptoms lined up exactly with what I had been experiencing.  I was convinced before we went to Houston that I did indeed have dysautonomia, or POTS.

A few days later we were in Houston for my appointment, and the doctors visited with me for some time, looking at my test results, and asking me a number of questions.  They told me that I did NOT have an adrenal-related illness, but that it was indeed POTS.  They suggested that I might want to see a cardiologist or another specialist who could help me balance some beta-blockers and some of the same medications my internal medicine doctor had already given me which MAY help my heart rate and bp issues.  Other than that, they suggested some things to help mitigate the other symptoms.  They told me that what I had been experiencing were migraine headaches, and that my sleep deprivation was certainly exacerbating my problems.  They suggested that I try Tylenol PM, or something stronger, to help me sleep.

Armed with the POTS diagnosis, I began to read more dysautonomia/POTS websites.  I found that the prognosis for POTS is mixed: Younger adults (a large percentage of patients) often grow out of it in a few years, but “older” ones like myself generally find it chronic.  No “magic pill” or shot exists which can instantly reverse POTS.  There are some medications which, accompanied by a number of lifestyle changes, can “help” some patients, and alleviate some of the symptoms – but there is no “cure.”  Some people are able to continue working despite the symptoms; others become medically disabled.  As to the source of the syndrome, there are a lot of unknowns.  Some develop POTS after a virus, or a stressful physical event like an accident, or pregnancy.  I have actually experienced two of the possible origins of the syndrome: pneumonia, and a B-12 shortage, in the past 2-3 years.  It may have resulted from either – or perhaps something entirely different.    

Some Changes

I have only had this POTS diagnosis for a couple of weeks at this writing.  I have just today begun taking some of the medications the doctor is trying. But a couple of weeks ago I started to apply several of the lifestyle changes the websites and doctors have suggested, and some of them do indeed seem to be helping:

—  Increasing my fluid intake to increase blood volume.  I had read that you did not want to drink large amounts of water ONLY, as it would flush your body of electrolytes, so I started drinking a lot of Gatorade.  But when I added several glasses of water a day in addition to the Gatorade, it seemed to me to make a qualitative difference in the way I felt. 

— Another change had to do with taking hot baths.  I read that many POTS patients do not tolerate heat very well, so they need to stay indoors in hot weather, and avoid hot baths. (Showers are out anyway because of the standing.)  Reading this was one of those “aha!” moments for me (or maybe “you idiot!” was closer to it!)  I enjoy soaking in a hot tub, and when we bought our current home, one of the big selling points for me was its big garden tub.  Since I have battled fatigue, soaking in the tub always sounded so good.  I was in the habit of taking two or three hot baths, especially on Sundays when I would preach three times.  No wonder I was feeling so poorly – there was not much worse I could be doing than taking multiple hot baths a day!  So  I have “jumped in” to taking totally cold baths – a shocker to the system I will admit!  But when I finish a cold bath I feel refreshed, and I do believe that is helping as well.

— A laptop cooling pad.  This may sound insignificant, but when you think about it, my “typical” posture for studying at the office every day was sitting at my desk with my feet up and with my notebook computer in my lap, for hours at a time.  My little computer, while not excessively hot, did indeed put out a bit of heat.  Imagine being heat intolerant, while having what is basically a “heating pad” on your lap all day!  That could NOT have been helping!  So Cheryl picked me up a little laptop cooling pad from Wal-Mart (about $40).  It is just a rectangular pad large enough to set your computer on, on your lap, with a couple of cooling fans in it.  I have used it for the past couple of weeks at home, and I think that is helping too.

— Exercise.  One might think that exercise, such as walking, would be out of the question for someone who got woozy whenever they stand.  But I am actually able to walk, as long as I keep going at a good clip.  I liken it to riding a bike: you stay up as long as you keep pedaling, but if you slow down too much, you fall over!  I have read that exercising keeps the blood circulating for POTS patients, so it does not “pool” at your feet and helps avoid the subsequent low bp and elevated heart rate.  Early on I decided that becoming totally sedentary would not help my condition any, so I determined to try to walk 2-3 times a day.  I begin my day with a prayer walk, 2 miles if I am up to it, and then I try to get another couple of ½ to 1-mile walks in later in the day and at night.  The Louisiana summer weather has played havoc with this schedule somewhat, especially since I am supposed to avoid heat, but I have kept a pretty good walking regimen, all things considered.  I believe that I would be much worse off had I had allowed myself to become sedentary. 

— One thing that has been very helpful has been the purchase of a heart monitor watch.  Cheryl picked this up for me from Academy; athletes use them in training.  It cost about $100.  It looks like a sports watch, but also comes with a monitor strap which you wear around your chest, which sends your heart rate to the watch.  Thus with a glance you can always tell what your heart rate is.  While this doesn’t “cure” anything, of course, it is useful as a diagnostic tool.  I can see that when I am sitting my heart rate may be 78, and that as soon as I stand it is 118, or if I linger too long while standing at the refrigerator deciding between a Coke and a Pepsi, it may get to 135 or 140.  Knowing what my heart rate is takes a lot of the guessing out of the equation.  I don’t have to worry about what my heart rate is; I know it.  Thus if I am standing and talking to someone, and it is only 108, that is not so bad.  But if I see it gets to 120 or more, I know I probably need to get seated as soon as possible.  I can also use this instrument to evaluate how my body is responding to various position changes — what do I tolerate, or not?  This has allowed me to see if my heart rate was at an acceptable level when I sit on a kitchen barstool — which it is.   Thus I can plan some strategies for how I might come back and preach again, hopefully soon.  And when I do, I won’t have to guess what my heart rate is, I will know it at a glance.  To me this is a very valuable tool.  I would recommend it. 

— Something which has NOT helped to this point has been the sleeping aids.  The doctors recommended that I start with Tylenol PM.  My mother & sisters have found it effective, so I thought it would work well with me too.  But after a week my sleep had not improved at all.  I then tried Unisom for a couple of nights, to no avail.  I am just unable to sleep at all until at least 3 or 4 in the morning.  Then I may sleep until about 7:00, then toss and turn for a while until I finally get up – depending on how badly I feel that day.  That three hours, unfortunately, has been my “daily average.”  My doctor has just prescribed something stronger which I will start that this evening, and we hope that will help. 

Currently

Despite the continued lack of sleep, I have felt a bit better the past couple of weeks – I am assuming as a result of all of these recent changes, together with a LOT of prayers from caring folks.  Some days I have actually felt well enough to go into the office for a half day – but on others I have had such a sick headache and a heaviness about my body that I am basically incapacitated. On those days, my body feels as though it were made of lead, and I can hardly move.  It takes every bit of willpower just to get out of bed to dress or brush my teeth.  All I can do on those days is sit curled up in a chair.  It is hard to explain, but it is totally incapacitating.  I have not yet identified any “triggers”, like food, or other activities, which set those “worse” days off.  I have read that with autoimmune diseases there is not necessarily a trigger – you are just going to have better and worse days, and you must just deal with them as they come. 

For about a week, my “better” and “worse” bad days were literally in progressive succession: one good day (“good” is relative: a minor headache, just a bit of nausea, but always the rising pulse whenever I stand up, every day) and then the next day I would have the disabling headache and heaviness.  I didn’t know if the bad day followed the good one because I was “recovering” from the activity of the day before, when I felt better, or what?  But that “good day/bad day” series lasted about a week, then I had two “good” days in a row: I attended church services for the first time in over a month last Sunday, and then I was delightfully surprised that the next day I still felt “ok” — and I worked another half day in the office!  I was hopeful that all the little changes were helping, and that I was becoming progressively better.  But then both Tuesday and Wednesday were “worse” days – although I felt better by Wednesday night and played a board game with our kids who had come down for Independence Day.  If there is a pattern for those better or worse days – I haven’t discovered it yet!

But at least I have been able to return to the office some, for the first time in almost two months.  And since I have had a few “better” days, I am planning on trying to preach a week from this Sunday night, from a high stool or chair behind the pulpit.  If that goes well I hope to try preaching on Sunday mornings again.  Whether this recent improvement is indeed a “permanent” difference, or a temporary cycle that may still revert is yet to be seen – but I am hopeful.  We’ll see how the medication (which I just started today) helps.  And I know I have a LOT of people praying for me as well. 

I know this is only the beginning of the story.  I will post again regarding POTS – both in specific blog posts addressing this topic, and in passing references in my “This Week in Paradise” posts.   I am confident that God has a purpose for all of this, and that He knows where it is all headed, and why.  But on the other hand, I am equally confident that I am NOT God, and thus have NO idea how this is going to end!  🙂  I know that my task right now is to be faithful and walk with Him one day at a time, and follow wherever He leads.  I can truly say that I am content with that, and am at peace with it.  We’ll see what He has for us.  Stay tuned for more!