After waiting several months for the paperwork to be sorted out, this month I started an exercise program designed specifically for POTS patients by Dr. Benjamin Levine from Texas. Dr. Levine is a cardiologist who counts NASA astronauts and POTSies amongst his patients.
There is a confidentiality agreement you gave to sign before they send you the details of the exercise program, so I can't give out specifics, but for the most part, it's just intense cardio workouts meant to push the limits of your system. Anyone with POTS who has tried to work out might be saying, "yeah right, I can't exercise without passing out." The real difference is that Dr. Levine's program has you doing cardio and weights in a reclined position. Well before I received the Levine exercise program, I had read that recumbent (laying down) bicycling, rowing machines and swimming were great for POTS patients. All of these exercises all you to work out without triggering the severe tachycardia you get from standing up. In fact, I can even stand upright in the pool and not get too tachy, because the pressure of the water on my feet and legs in strong enough to prevent the pooling of blood in my legs.
The first day I did Levine's program, I though I was going to suffocate or pass out. I couldn't get my heart rate up to the designated zone, so I just did what I could. After about a week, I was able to get my heart rate higher. Since I didn't get to the target zone the first week, I decided to repeat the first week. In my second week, and was getting my heart rate higher while rowing and recumbent biking, and my shortness of breath was not as bad, although it's still the limiting factor in my workouts.
Some people join a gym to do Levine's program, but I decided to buy my own recumbent bike and rowing machine in one, so I could work out at home whenever I was feeling up to it. I bought a Stamina 15-9002 EMR Conversion II for about $550, including tax and shipping to my house. There is another model, the 15-9003, that is about $200 more, but it doesn't seem to have any additional features from what I read; it's just the newer model. I had to assemble it myself, which took about an hour with my husband's help. It's quite large. I have it plopped in my living room so I can see the TV while I'm on it. It folds up a little bit, so I can hide it in a closet when company comes over.
It tracks the distance rowed/biked, the length of time you've been rowing/biking, calories burned, speed, and when biking it can track your pulse (although it isn't that accurate because I have checked it against my pulse oxymeter and my heart monitor - the bike shows a much slower pulse). As a bonus, I don't have to bee creeped out by the sweaty germs other people leave on the workout machines at the gym, I don't have to pay a gym membership, and my husband is using the machine to workout too.
I also purchased a Polar FS2C heart rate monitor for about $100. It has two parts, a band you wear around your chest that has electrodes that read your pulse and a watch that displays the pulse and time since you started working out. You can set target heart zones on the watch so an alarm will go off it you get above your target zone. I find this helpful because with POTS, you can really ruin yourself for a few days if you over do it and get above your target zone.
I already had some light weights, 2 lbs. and 5 lbs. I use those every other day and alternate with the cardio workouts. I try to do at least one day a week in the pool. I do resistance training in the pool without any equipment, but you can buy foam resistance weights for the pool if you want. Sometimes I use a noodle or whatever floats are around to create more resistance. I do lots of leg strengthening in the pool. My favorite move is doing a push up on the steps of the pool, so that my chest is just barely out of the water, and then doing kicks behind me in sets of 100. Sometimes I do 100 kicks splashing and if I have any juice left, I do 100 kicks without splashing, which is actually much harder on your muscles because you have to have control to do that.
The last piece of workout gear I bought myself was a pedometer, which tracks how many steps you take in one day. I bought a cheap one for $8, but they have really fancy ones for over $100. This has nothing to do with Dr. Levine's program, I just thought it would be a good motivator for me to see my progress over time. When I first bought it, I was only doing about 500 steps per day, because I was stuck in bed most of the time. Now I am up to 2000 steps per day on most days, and on really good days I'm doing 5000 steps. There are still some 500 step days now and then, and those are usually the days right after a 5000 step day, so it's because I've over done it on a good day. Most personal trainers will tell you to get 10,000 steps per day for overall good health. I'm working on it, but not there yet.
I will be finishing up Dr. Levine's program in September, assuming I can stick with the schedule and not repeat too many weeks. My goal is to get myself healthy and strong enough to catch the end of the surfing season in late September. Even if could just get one day on my surfboard, it would be worth it to have worked out hardcore for 3 months.
If you want to learn more about Dr. Levine's POTS exercise program, you can e-mail Tiffany at his office and she will send you some paperwork to fill out with your doctor (THR-IEEM-POTSRegistry@texashealth.org). You don't have to go to Texas to see Dr. Levine and the program is FREE. The program will be sent to your doctor and he or she will supervise you during the program.
There is a confidentiality agreement you gave to sign before they send you the details of the exercise program, so I can't give out specifics, but for the most part, it's just intense cardio workouts meant to push the limits of your system. Anyone with POTS who has tried to work out might be saying, "yeah right, I can't exercise without passing out." The real difference is that Dr. Levine's program has you doing cardio and weights in a reclined position. Well before I received the Levine exercise program, I had read that recumbent (laying down) bicycling, rowing machines and swimming were great for POTS patients. All of these exercises all you to work out without triggering the severe tachycardia you get from standing up. In fact, I can even stand upright in the pool and not get too tachy, because the pressure of the water on my feet and legs in strong enough to prevent the pooling of blood in my legs.
The first day I did Levine's program, I though I was going to suffocate or pass out. I couldn't get my heart rate up to the designated zone, so I just did what I could. After about a week, I was able to get my heart rate higher. Since I didn't get to the target zone the first week, I decided to repeat the first week. In my second week, and was getting my heart rate higher while rowing and recumbent biking, and my shortness of breath was not as bad, although it's still the limiting factor in my workouts.
Some people join a gym to do Levine's program, but I decided to buy my own recumbent bike and rowing machine in one, so I could work out at home whenever I was feeling up to it. I bought a Stamina 15-9002 EMR Conversion II for about $550, including tax and shipping to my house. There is another model, the 15-9003, that is about $200 more, but it doesn't seem to have any additional features from what I read; it's just the newer model. I had to assemble it myself, which took about an hour with my husband's help. It's quite large. I have it plopped in my living room so I can see the TV while I'm on it. It folds up a little bit, so I can hide it in a closet when company comes over.
It tracks the distance rowed/biked, the length of time you've been rowing/biking, calories burned, speed, and when biking it can track your pulse (although it isn't that accurate because I have checked it against my pulse oxymeter and my heart monitor - the bike shows a much slower pulse). As a bonus, I don't have to bee creeped out by the sweaty germs other people leave on the workout machines at the gym, I don't have to pay a gym membership, and my husband is using the machine to workout too.
I also purchased a Polar FS2C heart rate monitor for about $100. It has two parts, a band you wear around your chest that has electrodes that read your pulse and a watch that displays the pulse and time since you started working out. You can set target heart zones on the watch so an alarm will go off it you get above your target zone. I find this helpful because with POTS, you can really ruin yourself for a few days if you over do it and get above your target zone.
I already had some light weights, 2 lbs. and 5 lbs. I use those every other day and alternate with the cardio workouts. I try to do at least one day a week in the pool. I do resistance training in the pool without any equipment, but you can buy foam resistance weights for the pool if you want. Sometimes I use a noodle or whatever floats are around to create more resistance. I do lots of leg strengthening in the pool. My favorite move is doing a push up on the steps of the pool, so that my chest is just barely out of the water, and then doing kicks behind me in sets of 100. Sometimes I do 100 kicks splashing and if I have any juice left, I do 100 kicks without splashing, which is actually much harder on your muscles because you have to have control to do that.
The last piece of workout gear I bought myself was a pedometer, which tracks how many steps you take in one day. I bought a cheap one for $8, but they have really fancy ones for over $100. This has nothing to do with Dr. Levine's program, I just thought it would be a good motivator for me to see my progress over time. When I first bought it, I was only doing about 500 steps per day, because I was stuck in bed most of the time. Now I am up to 2000 steps per day on most days, and on really good days I'm doing 5000 steps. There are still some 500 step days now and then, and those are usually the days right after a 5000 step day, so it's because I've over done it on a good day. Most personal trainers will tell you to get 10,000 steps per day for overall good health. I'm working on it, but not there yet.
I will be finishing up Dr. Levine's program in September, assuming I can stick with the schedule and not repeat too many weeks. My goal is to get myself healthy and strong enough to catch the end of the surfing season in late September. Even if could just get one day on my surfboard, it would be worth it to have worked out hardcore for 3 months.
If you want to learn more about Dr. Levine's POTS exercise program, you can e-mail Tiffany at his office and she will send you some paperwork to fill out with your doctor (THR-IEEM-POTSRegistry@texashealth.org). You don't have to go to Texas to see Dr. Levine and the program is FREE. The program will be sent to your doctor and he or she will supervise you during the program.