Jul 24, 2011

Dr. Levine's POTS Exercise Protocol

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.

12 comments:

  1. I'm about to start Dr. Levines program. I have already been using a recumbent bike for a few months now. My doctor said I had a jump start. I'm going cold turkey off Fludocortisone and Midodrine. It always made my heart rate drop to 39-52 when I sat down after my 2nd dose. It makes nauseous and more dizzy I think. I'm so excited. I have heard great things about this. I hope I get better and get back to work. My husband and I would like to get pregnant at the end of next year. Hope all goes well with you.

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  2. My 18 y.o. daughter spirals out quickly off her meds. Midodrine and fludro help her to even be able to get to her recumbent stationary bike, which she rides almost everyday for one to two hours. On these meds she can tolerate some walking and has a few times ridden her street bike two miles. Off meds she struggles to get out of bed. She has improved with exercise since onset in January of this year. But so far we've been winging it.

    It is very frustrating that Dr. Levine requires participants to be off meds and that there is no general protocol provided for people who cannot tolerate cold turkey.

    My daughter started physical therapy & will soon start exercising in a pool.

    If there is more exercise information besides Dr. Levine's free but secret program, please let us know.

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  3. In response to Anonymous with the 18 year old daughter can't go off her meds to do Dr. Levine's program. I totally hear you on that one!!! Please post your e-mail address so I can respond to you privately. I will not publish the post with your e-mail address, to protect your privacy. I have some info you may want, but I can't put it on the blog. Thanks for posting!

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    1. I am in need of help. Could you please email me. I would love any advise. I have three children and my youngest is 11 weeks. I started having these symptoms after his birth. My email is kracke7285@gmail.com. Thank you so much.

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  4. POTSgrrl,

    I have the same problem that the previous lady posted about her 18 yr old daughter. I am on a beta blocker, and I cannot get out of bed without the medication. I have 2 small girls, and I can't lie around in bed all day. I really want to complete the Levine Protocol, but I am terrified that I will have to be off the meds. Do you have any advice on this one? My email address is kristenhoffield@gmail.com

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  5. I'm another one in the same boat. I can't seem to get off the meds without collapsing. I have spent MONTHS laying down with only 3 mins upright at a time before passing out. Meds keep me functioning (and I have 2 little kids also) - but I'd really like to start the exercise program to see if it would help. Can you email me your advice also? rahjah78@gmail.com thanks!

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  6. RJ - check out my blog post called "Exercise for POTSies." You can use the search bar on the top right side of the page to search my blog for the word "exercise" and it will show up.

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  7. Could you please email me. I need advise on exercise. I want to be able to function again. Kracke7285@mail.com. Thank you.

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  8. Hi im a 27 year old female who just had her first child 2 years ago this month.I recently went to the E.R. After having symptoms like a heart attack.. But the only test that was abnormal that they did was my lying, sitting, standing test. It was 30 beats exactly. So they gave me 2 bags of fluid IV and sent me home.. I had been having these episodes for a while..with such lightheadedness that it feels like i'm dying.. Its awful. I looked up POTS after my E.R. Visit... and after learning about it really feel like the exercise program could really help in my situation. I also have degenerative disc disease and i'm on medication for that. But i suffered injury then the pregnancy, then another injury.. Anyway, i just want to be able to play with my son without passing out.. Or feeling so awful i cannot get out of bed. I want to reclaim my life. I know that some women have POTS after pregnancy, and i dont know if that was the reason.. I just really want to try this to see if it helps. One thing though is im on medication that i have to take that is unrelated to the POTS. So i dont know if that excludes me.. Not sure what all the rules are.. if there is any information you can give me i would truly appreciate it! I dont really want my email out there but here it is, so if you can, you may contact me directly.. lunalilylove@gmail.com

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  9. I stumbled across your website and thought I'd respond to those who are worried about stopping their medication to try the Levine protocol. I've had POTS for 5 years now, and have been reading Dr. Levine's papers and trying to exercise on my own since I didn't fit into the criteria for the original study. The exercise program has now been expanded and is being sent to patients (through their doctors) that fit the broad criteria of POTS. It no longer requires that you stop all meds immediately. I urge you to ask your doctor to request the protocol from Dr. Levine if you want to try it. He's quick to respond and the protocol includes quite a few helpful details. I've been doing it for 3 weeks now and it's not easy, but I'm managing to keep up with it which is more than I expected to be able to do. Good luck!

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    1. Dear POTSGrrl, Thank you for providing Dr. Levine's email address for the POTS Protocol Registry. I sent my daughter's doctor a copy of an article about Dr. Levine, but our doctor hasn't registered her and we've been waiting for 6 months! Thanks to you, I just emailed Dr. Levine and hope to hear back from him with good news. My daughter has suffered for over 6 years and wasn't diagnosed properly until October 2012. She being treated at Children's Hospital. She receives in home saline infusion twice weekly, but her condition has not improved, and she is no longer in school. Hope I can talk to you about this if you ever have time. Thanks again for all you do!!

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  10. Thank you for this info!! I just sent them an email, and just wanted to say thanks for helping out your fellow POTSies. :-)

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