I haven’t updated much on my bout with dysautonomia or POTS (Postural Orthostatic Tachycardia Syndrome) in a while, basically because I haven’t had much to report. In a previous post I shared that I had been much improved since we moved from Louisiana to Oklahoma (the difference in elevation/atmospheric pressure and climate seem to have helped) although I have still not been “well” at all — very weak, with episodes of POTS headaches and fatigue. I have continued to walk in order to build up my strength, but my programme was interrupted by a horrible 2-week bout with a virus in April, after which I basically had to “start over” with the strengthening process. I’d gotten back up to 2 miles walking a day and was feeling like I was seeing some improvement, having preached again for the first time in 8 months in May, when it was time to go see a doctor.
I really didn’t feel like I “needed” to see a doctor, per se, except for one thing: I was running low on my sleeping medication, and one of the most debilitating effects of POTS for me is sleep deprivation. I just could not sleep without Trazadone, which had greatly helped this past year. But I was in for a surprise.
My appointment was with Dr. Naeem Tahirkili, of whom I had heard good reports. He had trained at the Mayo Clinic, and most importantly of all, was familiar with POTS. Unfortunately, that is NOT a common thing to find in a doctor. When I first went to my internist in Lake Charles and I failed the tilt table test, he was not aware of POTS as a possible cause, and I was his first diagnosis of the syndrome. When I had the virus in Oklahoma this past April, I was rushed to the ER from Urgent Care, and not a soul in either place knew anything about POTS. So I was grateful when a Facebook friend recommended Dr. Tahirkili to me. I didn’t think I needed much from him, just get me a prescription for Trazadone, and we would be on our way, only … NOT!
Dr. Tahirkili is indeed very knowledgeable about POTS, and had some definite ideas about what course we needed to take. He asked me what effect POTS had on me. I told him that I was much better in Oklahoma than in Louisiana, that while in Lake Charles I could not stand for 10 seconds without getting dry heaves, but that immediately stopped the day we moved to Oklahoma. I told him about the walking I was doing, and that I could do a few things, like help unload boxes for 10 minutes — I just needed to rest for a couple of hours afterwards. I really felt like I had been seeing some good improvement. But his response surprised me.
“Everyone knows that all pastors are nice guys”, he said, indicating that he thought I was making my POTS condition sound better than it really was. “What you are describing to me is not a normal life. Do you want to be able to work again?” “Yes!” I said enthusiastically. “I believe we can get you to work again,” he said, “but you have to be willing to do what I tell you.”
First off, he said that Trazadone is the WORST thing I could be taking for sleep. POTS occurs in many people because the arteries in their extremities are not keeping the blood pumped up to the rest of the body — especially the brain — well enough. Trazadone, he said, actually makes that condition WORSE! So right off the top, he said I needed to lose my little sleep helper. “But I can’t sleep without it,” I protested. “You will sleep eventually!” he said confidently. He shared with me a number of strategies for sleep that did not include medication. I was pretty hesitant, but understood the rationale, and told him that I was up for the challenge.
Next, he noted that I was taking a half a 0.1 milligram pill of Florinef every so often, when I felt especially “POTSY.” He said this does no good. (I knew that was right; I never noted any beneficial effect from taking the Florinef, and so I had basically stopped taking it.) He said the Florinef has to build up, and help you retain blood volume, but it must be used consistently, and in much greater measure than I had been taking it. So he quadrupled the Florinef to TWO 0.1 milligram pills, every day. He was glad that I had been walking, and encouraged me to exercise as much as I wanted, and to continue to drink plenty of Gatorade to keep my fluids and electrolytes up.
He told me that this is what we were going to start with, but gave this caveat: POTS is different for each person who has it. He said it may take some trial and error with this medication, and perhaps others — and it may get WORSE before it gets better — but if I would stay with him, he believed he could get me back to a “normal” life, which means that I can work, or run, or do anything I wanted to be able to do. But I needed to stop reading what everyone was saying on the internet about POTS, and do what he told me to do. Laughingly, I said, “I will be obedient!” I got my new prescription for Florinef, and we left.
Almost two weeks later now, I have some very good results to report. I will say, first off, that I am not getting much sleep. Even following some of the “sleep architecture” rules the doctor gave me, it is almost impossible for me to sleep before 3:00, and sometimes 5:00 a.m., and then for only a couple of hours. The thing is, I am doing remarkably well, despite the lack of sleep. As improved as I had begun to feel the past couple of weeks before the doctor visit, I have felt even better these past weeks. I have not had any “POTSY” episodes whatsoever, and have upped my exercise regimen to two walks a day, one in the morning and another at night, and for the past several days have added a THIRD exercise (swimming or disc golf at the nearby park) each day. A couple of weeks ago I had been able to play only 9 holes of disc golf, in very moderate temperature, before I had to stop. But last week I played all 18 holes for the first time, in 90+ degree temps, the hottest day of the year so far in Oklahoma. I took Cheryl to the farmers market in Norman last Saturday, and then to Wal-Mart, and I told her afterwards that it was like I was not even sick. That is some improvement!
So things are looking up. I know it is early, only a couple of weeks into the new regimen, but I feel very well, and can see some measurable improvement. I am more optimistic than I have been in some time, that I will one day be able to get back to full-time work. In the mean time, I will continue to “be obedient” day by day, continue my exercise program to rebuild my strength, and look forward to the next “open door” to do some supply preaching somewhere — hopefully soon! I hope this article might be of some help to those who are battling with POTS, as well as let my friends know how to continue pray for me. I’ll try to update again as soon as I have something newsworthy!