As far as health disasters go, 2017 turned out much better than 2016. No surgeries, no emergency room visits, one scan, and one procedure this year! (And those were planned.) Huzzah! However, that doesn’t mean the year was much better to get through. Virtually all of my other chronic illnesses took a back seat to symptom management of dysautonomia, specifically Postural Orthostatic Tachycardia Syndrome (POTS).
Dysautonomia is one of those conditions that affects everyone differently. (Though in reality, most chronic illnesses share that feature.) But once you’ve been diagnosed with dysautonomia, the new challenge begins: discovering what you need to do to attempt to return your life to as normal a state of existence as possible. Considering dysautonomia doesn’t have a cure, per se, this means primarily symptom management.
Here are some things that really helped me out this year in managing dysautonomia. (Note: none of the links are affiliate links. I simply included them as a visual representation of the products I find helpful.)
This is probably the most important part of symptom management for me. Individuals with dysautonomia are told to consume roughly 2-2.5 liters of fluid a day. Me? Well, I consume about 5 liters. Why? Because it makes me feel better. I sometimes drink nearly 30 ounces of water during the night (which means I have to get up to pee about three times, but whatever.) Once I get up, most of my fluid is either grape Gatorade G2 or the Propel Zero Calories stuff in various flavors. I’ll use Nuun Active tablets at the beginning of the day due to their higher sodium content.
This is probably the second most important part of symptom management for me. Before I had my first appointment with a cardiologist who told me to use salt tablets, I was gorging myself on gluten free pretzels (I have celiac disease) to try to increase my salt intake. I do eat salty food. I particularly enjoy green olives at the moment; I’ll knock back 10 Spanish Manzanilla olives (660 mg of sodium) if I need something salty. Dill pickles are another favorite. I know some people who nibble on pieces of Himalayan pink salt; I’ve done the same. But since I’m a definite grazer when it comes to food, there’s no way I could ever eat enough food to get the recommended 5 grams of sodium I need for POTS symptom management.
As such, I now take salt tablets; three 1 gram tablets four times a day. Now, that’s 12 grams of sodium chloride, but what individuals with POTS need is the sodium. Since 1 gram (in this case, one tablet) of sodium chloride contains only 394 mg of sodium (in this particular formulation, it can vary slightly), my three tablet dose is about 1.182 grams of sodium, so four doses is 4.728 grams, or just shy of the 5 grams I’m told to take. (That’s just chemistry). The tablets I take are not buffered and can be hard on the stomach for some people; I tolerate them fine because I have a stomach of steel when it comes to most medications. But others may do better with a buffered capsule.
At my cardiology appointment last January, my cardiologist recommended knee-highs of 20-30 mmHg. Not wanting to settle for the mundane, I scoured the internet to find cute compression socks and finally succeeded. Turns out these particular socks are awesome. They wash well (air dry them) and have lasted a year so far with no problems.
When I saw my POTS specialist last July, he recommended I switch over to thigh-highs of 20-30 mmHg. He said knee highs don’t do enough to prevent blood pooling, which is a major problem for me since 35% of my blood pools in my lower extremities when I’m upright. (Normal is about 5%). And lately, my blood pooling has been so bad that no machine will register a standing blood pressure unless I’m wearing thigh-highs. (This actually happened at the hospital in November, too). Unfortunately, finding attractive thigh-highs of the appropriate compression proved impossible. So I splurged on “brand name” ones that are ugly, but fit perfectly and work really well. I do actually feel better when wearing them. I will still sometimes wear knee-highs over my thigh-highs for a bit of extra squeeze. Plus, my knee-highs are too darn cute not to wear.
Unless you count salt tablets as medication, I was on no medication for my POTS for six months after my diagnosis. My cardiologist was going to start me on Florinef at my follow-up appointment, but it had to be rescheduled and then he went on medical leave for several months. So I just waited a bit longer until my POTS specialist could handle it in July. As a result, my overall symptom management was significantly delayed.
- Florinef (fludrocortisone) is the first medication I was started on, back on July 13th. It’s a type of steroid known as a mineralocorticoid. I was started on a tiny dose of 0.1 mg once daily and that dose has remained the same. I remember I felt somewhat better even after my first and second doses. There were a few times I forgot to take it in the morning and wound up with a rough day as a result!
- Potassium chloride is the second medication I was started on, at the end of July. Due to how Florinef works, it causes the body to excrete more potassium than usual in the urine. This can be enough to lower the body’s level of potassium too much. Of course, this happened to me, because my potassium always runs low anyway. So now I take 20 mEq twice a day. I can confirm that swallowing those suckers is the worst part of my day, every day.
Propranololis the third medication I was started on, at the beginning of August. It helps decrease your heart rate. Unfortunately, it kept my heart rate low enough that I became very lethargic and developed decreased exercise tolerance, which made doing my cardiac rehab near impossible. I stopped this medication at the start of September.
- Midodrine is the fourth medication I was started on, in the middle of September. My POTS specialist reviewed a month’s worth of my vitals that I had been recording and determined that my blood pressure wasn’t high enough. We’ve increased my dose three times now, so I’m currently on 5 mg four times a day. This is the medication I think is helping me the most.
I saw a fellow POTSie recommend this and instantly realized, “I MUST HAVE ONE.” Since there were many days, especially early in my diagnosis prior to getting on appropriate medication, where I spent most of the day reclined in bed, I wanted to be comfortable. I tend to do better when I’m able to stretch my legs out in a sitting position, so either bed or a recliner are my locations of choice as my home base from day to day. (This helps prevent my blood from pooling in my legs). Laying flat just wasn’t cutting it, especially if I was doing, well, anything, like reading or writing. So the pillow allows me to sit up while still having something soft behind me to recline slightly on. It’s also nice to be able to rest my arms on something while I’m reading!
I’ve been a fan of electric blankets for a long time. But I never realized their true utility until I was diagnosed with POTS in the middle of winter. I’ve always been cold, but once my body was wracked with POTS, it became difficult to regulate my body temperature. As a result, I’m cold 99% of the time. We have a queen-size electric blanket with dual controls on our bed during the winter. This past spring and fall, I put a twin-size one on my side of the bed for when I got chilly. We have a total of four electric blankets in the house (one for the bed, two for the couch, and one for the recliner). The cats can be found wherever there is a blanket turned on.
We first obtained a space heater in 2013 when the blower on our furnace went out and we had to wait four days for the replacement part to arrive. (And having power but no heat is the weirdest thing). Of course, it was the last week of March (already spring) and still snowing. But last January, as I was resting in bed (since I couldn’t do anything else with untreated dysautonomia), I couldn’t get warm despite multiple layers of clothing and an electric blanket on high. So I dragged the space heater out of the basement, set it up (safely) in the bedroom, and kept the door almost closed to keep the heat in. It was delightful. So delightful that I eventually burned the heater out a few months later. But we bought an identical one. I highly recommend a space heater as long as you get a safe one that won’t melt and follow the safety instructions!
Dysautonomia is a significantly challenging condition to manage. After all, the autonomic nervous system, which is dysfunctional in dysautonomia, is responsible for a wide range of functions within the body. Blood pressure, heart rate, digestion, sweating, and body temperature regulation are just some of the functions controlled by the autonomic nervous system. When these functions are dysfunctional, working around the resulting symptoms requires trial and error, as well as a good deal of patience. But there are products out there that can help you with symptom management!
What products have been helpful for you?