In the midst of regulating medications and working my way back to the office after my diagnosis of dysautonomia/POTS, I realized that it was probably time for an “official” update. Some of my friends have gotten “bits and pieces” of updates from Facebook or church, but nothing comprehensive. So hopefully this will update or “fill in the blanks” for those who are interested. I especially hope it might be useful to those who are newly diagnosed with POTS and are looking for means of help.
Following the confirmation of my diagnosis with POTS (Postural Orthostatic Tachycardia Syndrome) in Houston in June, my doctor in Lake Charles started me on a small dose of a beta blocker, metoprolol succinate. We could tell almost immediately that it was being successful at keeping my heart rate down when I stood up. However, it still seemed to fluctuate (see my POTS “roller coaster” post here!) so after a couple of weeks my doctor increased the dosage from 25 to 50 mg. This seems to be even more effective, and my heart rate has been more consistently in the 60’s & 70’s when sitting, and on better days, in the 90’s when I stand. For unknown reasons, there are still days when it will be higher than that, maybe 115 or so, but rarely as high as it was getting before the beta blocker. Once we have this medication just where we want it, I believe the plan is to add another med to help with my blood pressure, which still drops when I stand. Trazodone has continued to help me sleep, lack of which was one of my biggest problems before I was diagnosed. Being able to sleep 5-6 or more hours a night has helped tremendously.
I have also begun to use a stationary recumbent bike. I have read that this is a particularly helpful exercise for POTS patients, so Cheryl & I picked out one from Academy. I started exercising at least 20 minutes a day on that last week, on the lowest setting, which is not impressive compared to the kind of exercise I was doing pre-POTS, but it is a good starting place considering how sedentary I have been for a couple of months. Hopefully this will help me over time as well.
As a result of the medications, exercise, avoiding the heat, smaller but more frequent meals, increasing fluids and salts — and massive doses of prayer! — I have been able to begin to return to the office, and my preaching responsibilities at the First Baptist Church of Moss Bluff. Dr. Hebert recommended that I begin with a single Sunday night message, see how that went, and then try a Sunday morning. The Sunday evening service went well, but my heart rate was 160 beats a minute each time I looked at my heart monitor watch. That is the maximum exercise heart rate for a person my age – it is like sprinting the whole time I am up there! This was before the higher dose of beta blocker. I preached the following Sunday morning, after the increased dose, and it never got over 120, still like running, but much better. I felt like that was a major victory. However, even with my heart rate being lower overall, I still have higher and lower days. On “normal” days it will be in the 90’s when I stand, or when I ride my stationary bike. But other days it will be 10+ points higher – but these are not necessarily days in which I feel poorly. I have not been able to identify any “triggers” for this yet. I will say that last Sunday when I preached, it was one of those “higher” days from the start – my heart rate was 120 when I stood to talk with someone in the hall for just a minute. It was 130 while I SAT during the song service, and 160 the only time I looked when preaching. Hopefully this is an aberration; we had several things going that day, and our youth minister was announcing that he was leaving for another church. Hopefully it will return to being more moderate this Sunday.
But with all of the changes together, I have also been able to return to the office on a fairly regular basis. After the first doses of metoprolol, I was getting in about every other day, but since I have had the increased doses, I do not recall missing an entire day. I have had 2-3 individual days when I basically did not feel sick at all, other than being a little weak from lack of stamina. On those better days I have worked a full 8-hours, although I have been very tired by 5:00 or 6:00. But even on “worse” days, when I wake up with a sick headache and other POTS symptoms, I am able to take my medication and some fluids, eat, rest a bit, and still rally and come to the office later in the morning and work a significant portion of the day. Even on these “worse” days I am getting 5-6 hours in, which is great improvement.
The diagnosis for POTS patients varies widely. Many are simply unable to continue to work and must take medical disability. Others are able, with medication, time, and lifestyle changes, to return to a somewhat “normal” life and career. With the improvements we have seen already after just a few weeks, and one medication, I am more optimistic that when all the medicines and changes are in place, and the exercise routine is established, that I will be in the category of POTS patients who are able to get back to full-time work. And I am grateful for that.
But it will take time, and there are still definitely struggles. I saw that today, in fact. I felt pretty well when I got up; it was a Friday, my typical “day off” from the office. Getting up and around, I thought it was going to be one of those days when I didn’t even feel sick. But it would soon turn. I decided to try to go to the mall and get a pair of Dockers – just run in, get a pair, and leave – surely I could handle that. In fact, I even gave Cheryl a break from being my chauffeur and I drove us! But it was very hot out, and I felt the heat impact me as I walked from the car to the mall entrance. I went straight to the men’s department and began looking for my size pants, but I had not looked for two minutes when I began to feel weak and lightheaded. I knew my blood pressure was dropping. I looked at my heart monitor watch, and it was showing over 120. I sat down as soon as I could in the dressing room, tried on the pants, which fit, gave them to Cheryl, who paid for them as I continued to sit, and we left. I have had one of those “sick headaches” and wooziness all day since. I have read that POTS patients are very intolerant to heat, and this certainly seems to be the case with me. I was only outside for a short time – it was not 100 yards — but it seemed to have very deleterious effects. I will not go out again, if I can help it, before Sunday, and we planning on having Cheryl drop me off at the door of the church then.
My journey with POTS is very much a continuing saga, and I am definitely still learning. Some of the best things I have learned are not about my physical body, but about my relationship with God. If you were not present at First Baptist, Moss Bluff when I’ve shared the last few weeks, I hope you will take time to look at my blog posts of my messages on Psalm 3, “Thou O Lord”, or listen to the podcasts at www.fbcmossbluff.org, in which I chronicle some of the lessons I’ve learned. I hope these updates are informative for our friends and church members, and helpful to POTS sufferers who are looking for information. More updates later, Lord willing!