It has been some time since I last gave an update on my bout with POTS, and for good reason: for the past couple of months, I have been so sick that I was unable to type an article at all! I’ll review a bit and then update on where I am today. (I posted a short version on Facebook, this is a bit longer for those who are praying with me, and for other POTS patients who might be interested in the details of what is/isn’t working for me.)
I have been taking Metoprolol Succinate for some months, which had been effective in keeping my heart rate lower when I stand — one of the primary symptoms of POTS (Postural Orthostatic Tachycardia Syndrome). But while my heart rate had been somewhat under control, many of the other symptoms had not — and one particular symptom which had been getting worse was that although my heart rate was staying low, I was getting increasingly sick whenever I would stand. In fact, within a minute or two of standing, I would get dry heaves — which as you can imagine kept me staying down most of the time! I had tried to exercise on my recumbent bike, but within a minute or two, the same thing happened on the bike. So for a couple of months, exercise for me was almost negligible. We thought at the time that this was a case of the POTS symptoms getting worse, but we would soon discover otherwise.
At my next doctor’s appointment, I was given Mestinon to try to help with this and other symptoms of POTS. Mestinon is a medication which primarily treats MG (myasthenia gravis), but studies had shown that for some unknown reason, 40% of POTS patients have shown improvement by taking Mestinon. So we decided to give it a shot.
After 2-3 days I had not noticed much change, although I thought perhaps I “felt better” in some vague way. But then things began to deteriorate. Soon my stomach was very sour, and I was unable to eat anything at all without getting very sick. Now I was nauseated not only when I would stand up, but all the time. All I could do every day was curl up in a ball in my chair. I couldn’t read, work on the computer, or do anything of consequence. After a few days I decided to call the doctor and ask if he thought it was ok for me to get off of the Mestinon; I felt like it was making me worse. He said to cease taking it, and I did. For two days afterwards, I suffered some pretty strong withdrawals: I had bad migraine headaches, and was so light and sound sensitive that I just retreated to my bed and lay there in the dark, with no sound at all. It was one of the lowest times of my illness so far. I was frustrated that I seemed to be nothing more than a vegetable, unable to function at all. I wrestled with God in those hours (He always won; I’ll share more about those conversations in another post!)
But after a couple of very bad days, the Mestinon withdrawal was complete, and I was no longer so nauseated, and could eat again. But because I had stopped taking Mestinon, one morning I also forgot to take my Metoprolol, the beta blocker. I walked out from my bedroom that morning, and was whistling while I stood at the kitchen counter reading the paper that lay there. Cheryl emerged from the office, and said, “I have not heard you whistle in months!” I told her I felt pretty well. Then I noticed that I was STANDING there, reading the paper — and I was not getting sick! Then I realized: I had not taken my Metoprolol first thing that morning. I knew that was not insignificant: the increased levels of Metoprolol must have been causing me to get so sick when I would stand. I must admit that I had been almost subconsciously wondering if that was so; it was as if my body was fighting against that medication when I would stand. And looking back, I was getting increasingly sick the more we increased the Metoprolol dosage. I was sure now that this medicine had been the cause of some of my most debilitating symptoms the past months.
So I decided not to take any more Metoprolol. The morning I had my “revelation” was a Saturday, so I couldn’t call the doctor’s office about Metoprolol withdrawal, so I looked it up on the internet. I read that you really need to withdraw slowly, so I took a half pill Sunday and Monday. I had a doctors visit scheduled for Tuesday anyway, and we would see what he would say then. But I was already so much better, after just a couple of days, that I had no doubt. I was not “well” by any means; my heart rate was back to going up to 120-130 beats a minute when I would stand for any length of time, but at least I could do it without getting sick. I could now read, and I could stay on the computer for longer than a minute or two without getting nauseated. And best of all, it happened on the weekend when all our kids were coming in from all over the country for Thanksgiving! I would be able to eat, and play (to some extent at least!) and enjoy our family while we were all together! I was very grateful this Thanksgiving week!
I shared my story with Dr. Hebert that next Tuesday, and he concurred with my diagnosis: the medicine had been making things worse. He said I looked so much better than the last time he had seen me; and that I was obviously much better without the two medications. He did have me continue to take a small dose of the Metoprolol for 3 more days before stopping it altogether, and I did not have any major problems with withdrawal symptoms.
I shared with him what I wanted to do:
1) stay off all medications for now (except for my sleeping medicine; since I have had POTS I cannot sleep a wink without it). I was in no mood to experiment with yet another medicine just now — as you can imagine!
2) focus my newly rediscovered energies on an exercise program used by a doctor in Texas, who has his POTS patients spend 45 minutes a day on a stationary, recumbent bicycle — which provides them with exercise while keeping them off their feet. This, along with a weight training program, has given significant improvement to about 50% of the POTS patients he has treated, without medication. I told Dr. Hebert that I would like to try this course: stay off any additional medicine, and give my full effort for about 6 weeks to cycling and lifting weights, and see how much improvement I might see with that. Can I get to 60% of normal? 70%? 90%? Then we can re-evaluate, and see if I need some medication to bring me a little further along. But this way, I would at least have some kind of “baseline” as to where I am without medication. He agreed that this was a good strategy for now, and also assured me that at the end of that 6 weeks, there are some other medications we can try to keep my heart rate down, if we need to, that will hopefully not have the deleterious effects of the Metoprolol for me.
As I write, I am two weeks out from that last appointment. I have worked out on the stationary bike every day (except Sunday) and have gone from 20 minutes a day on my bike, to 40 yesterday. I will keep increasing until I get to 45 minutes, 6 days a week. On the bike my heart rate starts at about 120 while I am pedaling, and increases gradually to about 145 after 20 minutes. I purposefully sprint for 5-8 minutes, getting my heart rate up to about 160, pretty much a maximum exercise rate for my age. I also began a variety of weight-lifting exercises, with very light (10 lb.) dumbbells, and am doing these 3 times a week, Monday, Wednesday and Friday, to increase my strength. My heart rate is in the 150-160 range while doing the weight work as well.
Not surprisingly, I am pretty sore — especially as sedentary as I had been the past couple of months. But I consider the exercise program to be my most important “job” right now, and am focusing my best efforts on it, so that Lord willing I can get back to my real job of being the pastor of FBC Moss Bluff as soon as possible.
Right now I am much better than I was while I was on the medications. I am not instantly sick whenever I stand up, etc. But I am still far from “well.” My heart rate goes from 80 or so while sitting, to 120-140 depending on how long I stand. 140 beats a minute is what your heart would do at a full run, so that wears me out pretty quickly, gives me a headache, and leaves me feeling sick and very drained most of the time. But at least I can get up and do a few things, and I can read some now too, which is a blessing. I started work on a new sermon yesterday, which I haven’t done in a while, so that was fun. I went to our church’s 11:00 worship service a week ago, but in my exuberance I stood too long greeting people beforehand, and by the time we got to the sermon, I was feeling very badly, so I slipped out during the invitation. Last Sunday morning I rested in hopes of going to the Christmas program and all-church fellowship in the evening. I did attend that service, which was nice — but I wore down as the service went on, and began feeling very sick as I was heading to the fellowship and had to have my son Paul drive me home. Hopefully I’ll work into better shape over the next several weeks.
Although I do not know exactly what the future holds, one of the lessons the Lord has been teaching me through this POTS episode is that I can’t look too far down the road. I have to learn to walk with Him the proverbial “one day at at time.” We are all supposed to live that way, all the time, but episodes like these force one to really do it. For me right now that means that I just need to spend time with God every day in prayer and in His word, and focus on my exercise and the other steps I can to combat the effects of POTS. We will see how well all that helps, and what God decides to do in answer to the prayers of His people. I know that as Psalm 3:3 says, ultimately HE will be “the lifter of my head.” After the first of the year I will meet with the doctor again, and we will re-evaluate and see what my status is, how far I’ve come with the exercises, how further medications might help, etc. I greatly appreciate the prayers and kind acts of our church family and so many others. If you are praying with me, please don’t stop! Have a Merry Christmas! I hope to share another update soon.