When I first developed POTS & NCS, I would google, “Does POTS go away?” or “improvement with POTS” or “how can I get better with POTS?” I wasn’t sure when, how, or if I would see improvement.
I recently posted a list of 5 ways I have improved since being treated for POTS (postural orthostatic tachycardia syndrome) and NCS (neurocardiogenic syncope); those of you with dysautonomia may be interested to know what has helped me improve. Although I would say I am still not living a fully-functioning lifestyle, I am now far from bedridden. YAY!
Spoiler alert: If you are not that interested in POTS or dysautonomia, ignore this post and stay tuned for future posts more attuned to your interests.
Specific treatments* that have helped me improve are:
1) Beta blocker. I take metoprolol tartrate, 25 mg, day and night. This dramatically reduces my wildly racing heartbeat and enables me to stand more often and a little longer without my body getting as fatigued. Several medical professionals have asked me if I have a pacemaker, because it does seem to keep my heart at an unusually stable rate. My electrophysiologist prescribed this for me, and I noticed it helping right away.
2) Midodrine. It took me over a year to see the full impact of midodrine’s help. Midodrine constricts blood vessels and helps raise blood pressure. I was seen several times at Vanderbilt University’s Autonomic Dysfunction Center, and my neurologist there outlined the timetable and dosage plan for midodrine for me. I started with 2.5 mg, 3x per day, then increased my dosage by 2.5 mg each time about once a month. When I finally reached 15 mg, 3x per day, we increased my morning dose to 20 mg; the next month we backed off my afternoon dose to 12.5 mg, then to 10 mg, followed by the same for my midday dose. My current dose is 20 mg around 7-8 a.m., 10 mg before noon, and 10 mg around 3-4 p.m.
I am shocked if any of you unaffected by POTS and/or NCS are still reading. Those of you who have dysautonomia should know that this took about a year to find the right dosage level and really see how helpful it was. Each time we increased or decreased, I felt quite rough for about a week each time. For me, this proved to be worth it, because my too-low blood pressure is now higher and does not bottom out nearly as dramatically when I am upright. I try not to lie down too much on midodrine (it can result in dangerously high blood pressure, although this is not the case for me) except for after lunch or on days my BP seems extra low.
3) Salt. While most Americans seem to want to consume less sodium, I (and many dysautonomiacs) generally need to intake more sodium. This is often one of the first treatments a doctor will advise someone with POTS (certain subtypes of POTS may not follow this protocol). Salt helps thicken my blood and makes it more likely to “stick” around in the upper half of my body instead of pooling in the bottom half.
I aim for 5,000 to 8,000 mg of sodium per day. This is not easy to get! I generally have 1/2 tsp of sea salt in my morning tea, then repeat (definitely an acquired taste I built up to). I drink tomato juice midmorning and then took a 1,000 mg salt tablet with lunch (not doing right now due to nausea). Early afternoon, I drink an electrolyte-filled drink (coconut water, low-sugar sports drink, vitamin water-type drink, etc) with another tsp of sea salt. Then I have more tomato juice before dinner. I might sub or add chicken broth somewhere along the way. Whew!
Early on, I went through weeks of counting sodium like others count calories. I have my rhythm down now and prefer adding salt to drinks instead of food because I don’t eat a ton during the day (again, nausea) and because I can measure it better and not be discouraged about the taste of my food. Salty food is not a bad idea, but a serving of chips only has about 170 mg per serving– at that rate, I’d need to eat maybe 30 servings of chips?!? I will sometimes load up on olives, pickles, chips (with extra salt) and salsa etc. I don’t get much sodium from prepackaged or convenience foods (which can have super high sodium contents), because I rarely eat them.
As far as side effects, my blood pressure is still not too high; I haven’t put on weight from the salt; and (though this is not completely related), I have super low cholesterol. Crazy!
If I am in a given situation where I am feeling weaker and more tired and faint, I drink a glass of water (or Emergen-C or something) with a tsp of salt mixed in. This helps tremendously! I carry salt packets with me at all times so I can add them right in for that extra boost.
4) Increased activity enabled by beta blocker and midodrine. The combo of my beta blocker and midodrine (and salt) has helped me sit more, walk and stand a little more, get out of the house more, and do more in general. That has made me stronger and a little more fit, then I am able to do more, etc. Instead of a vicious cycle, it is a life-giving cycle! I am not up to any real exercise yet (neurocardiogenic syncope rears its ugly head pretty quickly), but even just making myself do more helps me be able to do more. I haven’t seen complete linear improvement with “just push through it and you’ll get better”– but a very modest pushing myself has helped a bit over time. Experts warn people with POTS not to lie down too much, because one can quickly become deconditioned. While we sometimes just need extra rest (and should listen to our bodies), I see the wisdom in that.
5) Dietary considerations. I love sweets but now rarely have sugar due to its effect on me– racing heart, wooziness, and increased fatigue. Even too much natural sugar (like that in a Larabar) bothers me. I also try to make my diet fairly veggie-heavy and generally avoid dairy, soy, gluten/grains. I also rarely eat anything processed. That may not sound too fun– and I certainly love indulging now and then or enjoying food someone makes for me– but I do think it’s helped me feel better. It’s kind of a veggie-heavy, not-so-meaty Paleo approach; I often feel most energetic (though nowhere close to cured) when I’m following a modified Whole 30-type way of eating.
I have done plenty of other treatments (and hope to pursue more) and will try to address them on this blog over time. Be on the lookout for information about cardiac rehab/ exercise, salt caves, compression stockings, fludrocortisone, anti-nausea meds, and much more!
Remember, everyone’s body has different needs and responds differently to different meds and treatments. Let your medical professional advise you.
* Like Dr. Kent Brantly, a missionary to Liberia who was cured from ebola, gave all credit to God for his healing, I see my improvement as coming from God’s hand. I am thankful He can work through doctors and medicines, as well as in supernatural ways. Prayer, from me and His people, makes a huge difference in my day-to-day living and my emotional and spiritual wellbeing, as does His Word.