“Having POTS is like being a mermaid, you need lots of salt and water to survive!”- Unknown
When patient’s come into the hospital, the major focus is their treatment plan. So my primary focus when getting diagnosed with POTS was..”well how is this treated?” POTS cannot be cured but it can be managed with aggressive lifestyle changes. Each treatment plan depends on the individual person because not all those diagnosed with POTS present the same! Dietary changes, hydration, and exercise are the few major changes that most ‘potsies’ implement into their daily life. These changes have been found to bring success in lessening symptoms. Symptoms can dissipate for some time, but that does not mean that POTS has disappeared or been cured. POTS symptoms can come back unexpectedly at any time. This is what is known as a “flare up”.
The first step I took to manage my pots was hydration. Now, I already am thirsty constantly and was drinking A TON of water throughout the day. This is beneficial, but I was told I was drinking too much water. I needed to drink about 2-2.5L of water daily, where I was having 4L daily. To put in perspective that is about 4, 32 oz hydroflasks a day. I was over hydrating, and basically peeing out all my electrolytes my body needed. To help me balance the appropriate amount of water, I bought a 2L water jug from Amazon!
The second step is adding in salt to your diet. Most diets typically try to limit salt intake or avoid extra salt all together. Those with POTS have to increase their salt intake. Increasing salt intake helps with circulation and blood flow, therefore helping pull water pooling in the lower extremities back up into the brain. By adding salt, the hope is to improve blood pressure and decrease the symptoms of dizziness, fainting, ect. My POTS specialist told me I should be taking in 5 grams of salt daily. YES FIVE GRAMS!!! Honestly, this has been very difficult to achieve! I have lived off of bacon, procussicito, salami, pedialyte, and liquid IV the last month! There are also salt tablet supplements online (vittasium) that are available to help if you cannot get enough through your diet, but they can cause nausea. Those with GI issues and POTS might have trouble with these supplements!
The third step is exercise. To me this has been the most difficult option to achieve. I have been extremely deconditioned since my diagnosis. When walking my dog my heart rate would skyrocket into the 180’s, and after only 5 minutes I was exhausted. Exercise is very individualized to each POTS patient. For me, I went all in. Typically patient will start horizontally on a recumbent bike or laying down doing exercises on the ground. The exercising should only last for about 5 minutes and be increased daily as tolerated. Since I knew I was going back to work where I walk at least 5 miles a day, I jumped into 30 minutes vertical exercising. I definitely pushed myself too hard and paid for this after!!! I am now learning my limits and triggers. I have taken a break from exercising because I have a physical therapy appointment with a POTS physical therapist, whom I feel could be very helpful with teaching me a better approach to gaining strength and pacing myself overall.
The fourth step is compression. I have PTSD from putting compression socks on my residents when I worked at a nursing home as a certified nursing assistant. They would be so tight, skin flakes flying everywhere, and I would be sweating by the time I took them off. Here I am at 28 wearing my own compression socks daily! Except, I don’t have anyone to put them on/take them off for me!! The purpose for compression is to help reduce blood from pooling in your lower legs. If you are a nurse with POTS, or honestly a nurse in general, I HIGHLY recommend buying compression socks. There are so many deals going on online where you can buy 2 pairs get 3 free ect. They are well worth the money and your legs will thank you later!
The last step is medication. This step is extremely individualized depending on the person’s symptoms and how they react to medications. When I was first diagnosed my MD automatically put me on propranolol 10 mg three times a day. Propranolol is a beta blocker typically used for high blood pressure but can also be used for headaches ect. After taking this for about a week, I realized I was more tired my blood pressure was tanking but making a huge difference on my heart rate! After seeing my POTS specialist I decreased my dose in half to 5 mg of propranolol two times a day. Then I was started on midiodrine. Midodrine is a drug that increases your blood pressure, and also helps with dizziness and fainting. Since taking midodrine and decreasing my propranolol, I have felt much better! I am hoping that these two are the only two I have to stay on, but there are a variety of medications that patient’s with POTS can be prescribed!
There are a few extra things that I noticed help me personally. I have tried to avoid alcohol as much as possible because it leads to a terrible flare up the next day. I also try to limit caffeine or avoid it entirely! These two were hard for me because I love my Starbucks, especially during a busy shift! I also try to nap when I can, I have learned to say no when I am too tired, and ask for help when I need it.
What are some lifestyle changes you have made that help your POTS?! If you are curious about my favorite salty snacks or compression garments stay tuned for some upcoming blogs!!