My Mayo Clinic Plan for Feeling Better…
At Mayo Clinic in 2012, they created a plan specific to my case to help me feeling better. I am planning on monitoring my progress with the plan on my blog. The doctor said I will need to do most of these things for the rest of my life, or once the POTS symptoms get better, they will come right back. What would be recommended for you or patients in the future may be much different.
Sodium: consume more
My sodium levels were low despite drinking 3 servings of Gatorade a day and dousing my food in so much salt other people cannot even stand to eat it. I never would have thought my sodium levels were low! I think the reason I was having trouble is because I rarely eat canned or processed foods. The solution is to drink a few servings of commercial tomato juice. The manufacturer adds so much salt that one 4 ounces serving provides 1/3 of your daily sodium needs. Another option is salt pills which have about 10% of your daily sodium per vitamin sized pill. Personally, I would rather drink 4 ounces of tomato juice than take 3 big pills for the same effect.
Fluids: drink less
Most POTS patients get told to drink more fluids in order to increase their blood volume. I had been told this as well and was obsessed with making sure I drank enough. I was drinking at least 3 liters of non-caffeinated fluids a day, yet was always thirsty. You can imagine how much I run to the bathroom! The doctor said the reason I am so thirsty, despite drinking so much, is because my sodium levels are low. Without enough sodium, my body cannot hold onto the water and it just runs right through me. Since my body is unable to hold on to the water, I am indeed thirsty. If I consume enough sodium, 2 liters of fluid should be enough. I was told getting my sodium and fluid levels in a happy balance is very important to feeling better.
Compression Stockings: wear them
I already wear compression stockings and I need to continue doing so. It squeezes my leg making it more difficult for blood to pool in them. They aren’t the most comfortable or attractive things, but they do help a lot. Also, they make some that look a lot like normal stockings and I can wear with dresses. The level of compression I wear is 20-30 mmhg. This isn’t the lightest compression level, but it isn’t the heaviest either. At first it took me awhile to get them on, but I have gotten better with time. Someday, I won’t have to wear these!
Exercise: 5-6 days a week
I was given an exercise plan that is a combination of strength and cardio. The doctor told me this is something I will need to do for the rest of my life. The doctor said down the road, once the POTS symptoms are better, I may be tempted to skip workouts. She said the symptoms would rapidly come back if I did this. It is kind of intense to hear you need to exercise 6 days a week FOREVER, but it would have been more intense to hear I’ll feel this crappy forever.
Here is the exercise plan…
Aerobic Exercises: 2-3 times per week
- recumbent (level to the ground) cycle
- rowing machine
- phase in upright exercise, such as walking, once 30 minutes of this type of exercise is tolerated
The target heart rate range will be 128-133. Please make sure you consult your doctor if you are going to start exercising because your target heart rate range will be different based on your baseline rate. The good news is, he said your heart rate can go up to 220 and nothing bad will happen! On a scale of 1-20, the percieved exertion goal is 12-14. This is called the “somewhat hard” range and falls between “fairly light” and “hard”.
Strength Training: 2-3 times per week
- On a leg press machinedo leg presses, toe presses, leg curls, and leg extensions
- do 8-15 repitions (whatever in this range is best tolerated)
He said I can modify these to do them with resistance tubing and bands, but it won’t have the same impact as a machine does. The doctor recommended using a physical activity monitor in order to be aware of my activity level.
- Warm up 5 minutes at an easy pace.
- Starting out, do 5-10 minutes of cardio or whatever is tolerable. Do 2 sets of 8-15 reps of each strength exercise. Start out at whatever weight is strenuous, but not so hard I can’t complete the set of reps. As a certain weight becomes easy, I need to increase the weight (I know, some of this stuff is “duh!”). I don’t want to overdo it starting out because this will make me VERY sick.
- The goal is to get up to 45 minutes of working out.
- Cool down for 5 minutes at an easy pace. It was emphasized I must do this. It is healthy for everyone to cool down, but especially crucial for people with POTS. My blood pressure will rapidly drop (as it would for anyone), and this can make me more suspecptible to feeling symptomatic and even fainting.
Midodrine & Beta Blockers: wait and possibly try in 2 months
Midodrine increase blood volume which helps people with POTS quite a bit. My doctor said sodium and fluid levels need to be in excellent balance before messing with the volume level with a drug like Midodrine. He said we should wait a few months because that will give me time to implement my new fluid intake/sodium intake plan and get the levels balanced. At this point we will consider this drug as well as beta blockers (lower pulse).