Exercise is a treatment, but not a cure. Anyone with POTS has probably already heard their doctor prescribe exercise. That can sound like a cruel joke when just standing feels like cardio… well, because it actually IS cardio. Anyone with POTS, who has googled POTS and exercise has probably already stumbled upon vague descriptions of the secretive “Levine Protocol,” which was developed by a doctor, who initially specialized in rehabilitating astronauts after returning deconditioned from zero gravity.
What’s the Levine Protocol and how to get it.
Dr. Levine is a cardiologist, who developed an exercise plan for POTS patients that slowly ramps up exercise over 3-5 months. The idea is to strengthen your cardiovascular system and muscles, so that your body can overcome the deficits caused by your dysautonomia. A patient may also need to initially overcome some deconditioning that’s happened since falling chronically ill. The idea is NOT that POTS patients are lazy, in fact many were incredibly healthy and athletic before this thing hit. I would argue that although my cardiovascular system isn’t working correctly (thanks to my haywire autonomic nervous system), my heart is actually much stronger than your average person’s, because POTS creates a tremendous amount of extra work on your cardiovascular system. Experts in the field contend that there’s another reason beyond a stronger body that explains why exercise also helps improves overall quality of life for POTS patients, but the science hasn’t determined it yet. It is known that exercise can generally increase blood volume with some time. Interestingly there is research showing that in general exercise can help modulate and down-regulate the immune system, so in this vein exercise may be curbing some of the dysfunction in our bodies.
For what must be legal reasons, a patient must have their doctor request the “Levine Protocol” on their behalf. Have your doctor request the exercise program by emailing their complete office information to THRIEEMPOTSRegistry@TexasHealth.org. After waiting for months to receive the protocol, I anxiously reviewed it with my doctor. I was hoping it would have something special, or at least something I hadn’t thought of yet. There wasn’t anything mind-blowing, but the plan has structure and specific heart rates to guide your activity, because it’s hard to know what a good exercise heart rate should be when your resting heart rate is already well into the 100’s. By the time I got the protocol, I was already spending time at the nearby gym on the reclined bike, rowing machine and weight training circuit (all sitting of course). I started out only going for 10-20 minutes on literally level 1 or 2 of the reclined bike, which was enough to be at my doctor’s prescribed target heart rate of 140 beats per minute (bpm). After 2 weeks I was able to move up to level 3, then level 4. It was so depressing to feel so weak, but I tried to think less and just go through the motions.
Ramp up your exercise slowly, because too much will make you feel worse!
Any decent doctor will tell you to ramp up your intensity slowly, because as you probably have already experienced, pushing yourself too much can leave you absolutely exhausted or in a flare the next few days. If you’re bed ridden, as my cardiologist recommended, you can start with leg-ups, pillow squeezing exercises and gentle stretching. I was nearly bed-ridden after a hospital stay, and I began with just sitting up for most of the day. Next, I graduated to tiny walks to the mailbox, then around the block. Even if you’re having a good day, try to keep it reigned in to avoid crashing.
Make sure to always monitor your heart rate for any real exercise.
Lots of POTSies, including me, use the affordable Polar FT4 or something similar. On at least two occasions I pushed myself to do 15 minutes on the rowing machine (which didn’t have a heart-rate readout), only to experience near anaphylaxis a few hours later. Yes, I’m not a standard POTS case, because my mast cells apparently degranulate during strenuous exercise only to provide a delayed allergic response several hours later, not during my actual exercise. Thanks, life. No doubt my heart rate was well beyond my recommended 140 bpm. Anyway, lesson learned, but some life lessons shouldn’t be so hard won.
No reclining or laying down during your waking hours.
A great tip from the Levine Protocol! They recommend staying upright for most of the day during your waking hours. Reclining or laying down for prolonged periods when not sleeping at night or for a nap can degrade your existing conditioning, and erode the gains made by your workouts.
What kind of exercise?
The goal (according to my doctors) is to get to 45 minutes of exercise 5 day a week.
It’s recumbent, and yet a powerful combination of strength and cardio. Great for building big strong hearts. Seems to be a favorite of the Levine Protocol. Careful you don’t overdo your heart rate with this like I did!
Targeting the core and leg muscles can especially help. Muscle tone and overall strength can be hard to maintain with this chronic illness.
The pressure from the surrounding water reduces orthostatic problems. For this reason, a lot of POTS patients find it easier to stand in the water even if standing is generally tough. I feel so much more normal in the pool- it’s amazing, but you won’t find me doing any laps. There’s been some research indicating that chlorine from swimming pools may “cause parasympathetic dysautonomia and increased response to inhaled beta-2 agonists, consequently resulting in increased baseline airway smooth muscle constriction airways dysfunction and neurogenic inflammation.” The study says these subtle effects seem to reverse after stopping swimming practice, but if you seem to be sensitive it’s something to keep in mind. Anecdotally, many POTS/MCAS patients seem to do better with outdoor versus indoor pools and salt water versus chlorine pools.
Some doctors will recommend this, but this can be way too much. All I’m still able to do is very light “easy” yoga for maybe a maximum of 10-15 minutes… meanwhile I can walk for 2 miles straight. The changing posture causes lots of blood pressure swings- that on top of the blood pooling make this very challenging for a lot of us.
Something that most healthy people take for granted. Walking is great to help maintain bone health, since it’s weight bearing. Osteoporosis and osteopenia is common for those of us with MCAS unfortunately too, so weight bearing exercise is very needed. Walking with ankle weights are especially helpful for keeping our hip bones stronger for those of use who are on the slim side too… if you’re up for it. Even what looks like a stroll is considered cardio when your heart is in target range- you can just walk as slow or as fast as you need. I’m now able to walk 30-45 minutes most days, and I can actually do some speed walking on my good days!
This is something I wasn’t sure I’d ever do again. Recumbent, and unlike the rowing machine it’s in the fresh outdoors! A nice treat in the right weather. My little therapy baby makes it extra special these days. Staying close to the shore makes it easy if I need to get pull myself out and flop onto shore quickly. It’s still nowhere as easy as it used to be and I’m not going out for 3 hour sessions anymore, but getting out on the water feels like reclaiming a part of myself. It counts and it’s fantastic. It’s all relative. I say take what you can and savor it.
Updated: July 5th, 2019