A New Regimen: POTS Update, June 2013

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!

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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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15 Responses to A New Regimen: POTS Update, June 2013

  1. Hi, Shawn. I’m Cheryl’s cousin (Goldie’s daughter), Nancy. I really enjoy your blog post each day. Congratulations on your improved health. God Bless.

    • Shawn Thomas says:

      Thank you, Nancy; I appreciate you letting me know you are reading my blog! I am grateful for the improvement in my health, and looking forward to what God has for us next.

  2. Gene Haymon says:

    I enjoy your daily articles and am happy you are doing better with Pots. My daughter, Heather, is progressing, went to Vanderbilt, but your article today may have directed her to a doctor that understands her illness!! I hope she will be able to see him. Gene Haymon

  3. Shawn Thomas says:

    Hey Gene! I am grateful to hear that Heather is progressing. I guess Arkansas is not that far to see Dr. Tahirkili if she felt led to — I hadn’t thought of that. I have continued praying for you and Heather each week; do keep me updated so I can know how to pray!

  4. richard mitchell says:

    Sounds like good progress to me…but can’t really imagine what it must be/have been like to deal with such a unique illness. You might consider becoming a professional disc golfer…just a thought. Keep on keeping on!!!

    • Shawn Thomas says:

      Ha — Richard, if you ever saw me play disk golf, you would never make that suggestion. I am horrible at it — but do it to get some exercise, and to be with the kids.
      POTS really is a weird illness; it has thrown me a lot of wrenches for sure, but I am grateful to be doing better. Going to try to go out with the kids to the driving range in a bit (and no, I am NOT good at that either!) Good to hear from you — hopefully we can get up to Beggs sometime and will get to see y’all!

  5. Hi Shawn, your cousin Nancy sent me your blog link. I have a genetic connective tissue condition and POTS is one of my many symptoms. I’m so glad you’ve found a doctor who is able to help. I have a cardiologist who is familiar with it and he put me on calcium channel blockers that have helped immensely. I was passing out every time I stood up and getting numb extremities before. I still have an extremely rapid heart rate but it’s lower than before the meds. I’m on Restoril for my sleep. It’s very mild but helps diminish my wide awake times some.

    I’m 30 and this year my overall health has gotten significantly worse twice already so I’m now unable to even work on my writing ministry from home. So I know how it is to not be able to do the things you are called to do. Blessings on your continued journey.

    • Shawn Thomas says:

      Hi Amy! I’m sorry to hear about your condition. I was much worse in Louisiana than I am now here in Oklahoma, and as far as I know, POTS is basically the only thing I have. I know some folks like you who have several additional conditions as well, and I can’t imagine … POTS is enough to tackle by itself! I can empathize just a bit with your not being able to write, because that is how I was in Louisiana: I would get sick most of the time when I spent any more than 30 seconds on the computer, so it was very frustrating. I am rarely that way now, and hope it continues to be that way. I pray that you will be able to find something to help with your condition so that you can minister through your writing.
      Thanks for taking the time to share; I appreciate it, and hope you will continue to check in from time to time, and let me know how things are going.

  6. james rivers says:

    Excited about your progress. Prayed God would hasten your healing and continue to give yor grace for the journey

  7. Hey Shawn! I am so glad you mention the atmosphere. I have been tracking good days and bad days. Bad days always came in the winter with an impending cold front…cold intolerance. During the end of May and early June, MY BODY cooperated so much with consistent 70-80 degree weather. I went a couple of weeks without a terrible POTsie day. However, now that the temps are getting upper 90s with heat index even higher, I am starting to feel the effects of heat intolerance.

    I have removed (well sometimes I cheat and pay for it) gluten, dairy, soy and several other groups. My nausea is drastically better!!! Just wondering if the new doctor mentioned any of those lifestyle changes?

    I too got off my sleeping meds. I don’t think I slept for two-three weeks more than a combined total of 10 hours. But I am now getting more sleep than I did with the sleep meds (not to say I don’t have some late nights but its not near as bad). I am going to google this new doctor. He is much closer to me than any of my other specialists. 🙂

    I am so happy to hear that you are progressing too! And those poppers you are about to grill in that picture look so tasty! Do I need to mail you a LSU hat and wind shirt for your next picture you post????

  8. Shawn Thomas says:

    Hey Heather; good to hear from you! I really do think there must be something to the barometric pressure/atmospheric pressure factors and POTS. Lake Charles was only 10 feet above sea level, and Norman is almost 1100. Seems like the instantaneous change I had for the better the day I moved here would have to have to do with something like that? I think your tracking of the fronts and POTSY days is very interesting. I have thought about doing something like that, as I have noticed that a lot of my “episodes” have been when fronts were moving through.
    It is going to be interesting to see what the heat does to me. I haven’t been sick at all in over two weeks, but it has been pretty mild weather for the most part. I did play disc golf in 90+ degree weather that one day and I did great. It’s supposed to heat up for a while beginning tomorrow, so we’ll see!
    Dr. Tahirkili did not mention anything about diet at all — other than to keep well hydrated with Gatorade. Sounds like you have noticed some direct “cause & effect” of those foods — I have never noticed a dietary connection with my symptoms at all (other than feeling poorly when I don’t eat small portions because the blood goes to my digestive system and not my brain). I told your dad I hadn’t thought about you going to Dr. Tahirkili here, but it really probably isn’t that far. I’ve only been to him that one time, but so far the results seem to have been good.
    I made those poppers in imitation of Steve Gaudet’s from the Gillis Meat Market north of Moss Bluff. His are marvelous. Mine were a poor imitation of his, but still very tasty! (And … somehow I have a strange feeling that if you mail me an LSU hat, it is probably going to get lost in the mail! 😉
    I’m still praying for you all regularly, so keep me updated!
    Boomer Sooner! 🙂

  9. Pingback: POTS update July 2013 | shawnethomas

  10. Tammy says:

    Hi Shawn,

    You just can’t imagine how we’ve prayed to find Godly guidence to find a provider in OKC area who understands autonomic dysfunction!!! AND that he has been trained at Mayo Clinic!!!

    My 16 yr old son was diagnosed with dysautonomia orthostatic intolerance AND high blood pressure. Two weeks ago we visited Mayo in Rochester, MN & we are still awaiting final instructions on where to go from here.

    My son also has trouble sleeping & a local provider had him on Trazadone. Mayo dr’s said to wean off it & STOP! It worsen the AD symptoms.

    I’m calling ur dr first thing Monday morning!!!!! We live right outside of OKC, so its perfect.

    Thanks for posting!!!!

  11. Shawn Thomas says:

    Tammy, I am so thankful that my blog could be of some encouragement and help to you! That is something about the Trazodone, isn’t it? I hope that Dr. Tahirkili will be as beneficial to your son as he has been for me. He had told me we may have to try several things before something worked — but thankfully the first course he suggested has worked as well as we could have hoped. It is now about 2 months later and I am basically asymptomatic — exercising 3-5 times a day and looking at getting back into full-time ministry as the Lord leads.
    I have a number of people with POTS on my personal prayer list, for whom I pray every week; if you’d like, you can e-mail me your son’s name and any updates at setfbc@bellsouth.net. God bless you all as you walk through this together!

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