Levine Exercise Protocol

[bombsh3ll]

After much research and self directed exercise on my recumbent bike since soon after POTS struck, I decided to try and obtain the "top secret" Levine protocol. Surprisingly after what I had heard, I had this within a couple of days - I think things have changed now the research has finished and they are giving it out much more freely without any registration process or exclusions. 

It turns out I have actually been doing the cardio part of month 1, nearly every day, for 4 years, but no weights or strength training (I had thought the bike would take care of strengthening my legs). Also, I am not sure I have been getting/keeping my HR into a high enough zone consistently when on the bike. I have therefore decided to start the protocol doing my best to achieve the intended HR zones, from month 1. 

I would really love to hear from anyone who is doing/has done the Levine protocol and how it went. In particular, ideas for strength training lower body exercises would be welcome as it basically gave instructions for gym equipment but just to do your own thing if you can't get to a gym (I am housebound & even if I could get to a gym would soon be banned for recurrent syncope!)

B x

[dancer65]

Hi 

Dyna bands are a great way to start resistance training , they are 

great for toning muscles which will help stabilise the joints. You can buy different resistance bands , I have bought sets of three , easy medium and strong from amazon. You can tie them to go around the ankles so you can do adductor and abductors on your side . On your stomach you can do hamstring curls . And sitting on your bum leaning on elbows leg raises . Untied you can do arms bicep curls, lateral raises by having one end of the band under your foot whilst sitting . Triceps can be done by dropping one arm down your back behind your head , other hand reaching up the back each hand holding end of band , the tighter you make the band the more resistance . Those are a few very basic exercises. Gym balls are also great for core but no good if you get dizzy ! A small foam football can be placed and squeezed between knees , under the foot for thigh and calf work and between hands with elbows lifted in line with chest  for pectoral and arms .

Pelvic curls are great for core. Placing the hands on the the ichiums means you can feel the back muscles working whist working the abs .

I  am fitness instructor and sports therapist ,  I do quite a lot of work with disabled clients,  I live in Wales if you send me private message I would be happy to send you my number to have a chat if that would be helpful . I know you have EDS another consideration for you .

I hope this helps ! Xx

[KristaKupcake]

I have not done the Levine protocol but I started doing my own exercises at home to start feeling better. So far it seems to be helping, though it can be very difficult some days. I do squats and lunges (can make me lightheaded), calf raises with weights, bicep curls and other arm / shoulder exercises, crunches / bicycle kicks, leg lifts and of course, the treadmill. I’ve been slowly increasing the amount of weights I lift as well as increasing the difficulty (incline) and speed I walk at. Fingers crossed it continues to have positive results - so far so good. 

Today I did some vacuuming too - that is a workout on its own!

[firewatcher]

I did the complete Levine protocol starting January 2015 and in November of this year, I earned my Black Belt in karate. WooHoo! BTW, Dr. Levine is extremely kind and supportive of our efforts with his protocol, I saw him in July of 2015 and he tweaked my exercise to meet the requirements for karate and supported me during my efforts.  I started with strength exercises given from my Pilates instructor/PT (who also oversaw the protocol for me,) but there are plenty of books that you can look at for Pilates exercises too. They are very good because they are supported by the floor or other things and many are supine or reclining. I worked up to a personal trainer at the gym and did several of the easier strength machines for several years. I continued to do the entire Levine protocol during the last several years and still do it today. I have noticed that it is "lost" quickly if you stop and very much a health/orthostatic maintenance thing for me. Quads, hamstrings and calves are critical for the "muscle pump" of getting blood back to your head. I try to workout 6 days a week and have found that muscle soreness and fatigue are far greater when I take a break. The beauty of Dr. Levine's protocol is the gradualness of the effort. It can seem so very slow that you don't see improvement until you look back and realize that you just did "whatever" without graying out. My heart rate is still excessive (for a normal person) with exercise effort, but I can tolerate so much more effort now than I could before that almost no one would realize I have any issues at all. Soreness and fatigue WILL be an issue, but it improves if you stick with it. If you can't progress, keep doing what you did before and don't stop. I'm happy to answer any questions you have about my experience.

[bombsh3ll]

2 hours ago, dancer65 said:

Dyna bands are a great way to start resistance training , they are 

great for toning muscles which will help stabilise the joints. You can buy different resistance bands , I have bought sets of three , easy medium and strong from amazo

Thanks I'll def look into those. The CHOP modified protocol instructions show somebody using a rubber band & it sounds like it can be used to tone a wide range of areas!

2 hours ago, dancer65 said:

I  am fitness instructor and sports therapist ,  I do quite a lot of work with disabled clients,  I live in Wales if you send me private message I would be happy to send you my number to have a chat if that would be helpful . I know you have EDS another consideration for you .

I will do that's really kind! I had actually contacted a couple of local personal trainers looking for someone to supervise my exercise initially - particularly in relation to trying to go to the gym where I wanted someone qualified who was there just to keep me safe & not have the gym staff panicking and calling ambulances - but none of them wanted a syncopal client or had heard of POTS or EDS. 

 

43 minutes ago, KristaKupcake said:

I’ve been slowly increasing the amount of weights I lift as well as increasing the difficulty (incline) and speed I walk at. Fingers crossed it continues to have positive results - so far so good. 

Well done you! It's so encouraging to hear positive exercise stories. I bought a treadmill back when licorice root capsules were working for me, but I detest the thing and am glad it isn't on the first couple of pages of the Levine protocol!

Well, I just did day 1, month 1 - almost. I timed it wrong and started my cool down 5 mins early, but think it was about right for me. I do 30 minutes on my recumbent bike most nights, but can tell I worked harder tonight minding to stay in the designated HR zone, as I was sweating much more and my knees are sore. I am glad it proves to be more taxing than I've been doing so far, otherwise it would be disheartening if I'd been doing it all along without benefit. If that was the first session though, goodness only knows how I'll cope with the harder levels!

B x

[bombsh3ll]

13 minutes ago, firewatcher said:

I did the complete Levine protocol starting January 2015 and in November of this year, I earned my Black Belt in karate.

Wow that's amazing! 

14 minutes ago, firewatcher said:

Soreness and fatigue WILL be an issue, but it improves if you stick with it. If you can't progress, keep doing what you did before and don't stop. I'm happy to answer any questions you have about my experience.

Thanks I am sure I will have questions. The guide that comes with the protocol now it is being widely disseminated makes clear that the Levine team are NOT to be contacted for advice as they don't have the resources to help everyone outwith the research study, so it is good to find someone with first hand experience. 

B x

[p8d]

If you are on beta blockers you need to go by perceived difficulty rather than heart rate.  I do a modified Levine protocol that’s tweaked by my PT.  Single leg raises while holding something will strengthen calves.  Sitting leg raises with ankle weights, bands around ankles and moving one foot back then the other side and then off to the side are some I do.  Getting in a squat with your back against the wall and holding for several beats is one I do while doing bicep curls.  Just remember to pace yourself and listen to your body if you are fatigued the next day.  

[bombsh3ll]

13 hours ago, p8d said:

If you are on beta blockers you need to go by perceived difficulty rather than heart rate.

I couldn't tolerate beta blockers, made me more synopal, I just have a low resting HR. I know I would probably "cheat" with the RPE scale too - oh that's the hardest I can manage huff puff! - whereas the heart rate doesn't lie. I have a polar watch with a chest strap. 

What I did realize is that up until now I probably haven't been working hard enough to benefit as I felt the effort way more when keeping in the prescribed HR zone. Just because I'd been on my bike for 30 mins before, pedalling at a certain resistance, I thought I was doing pretty well for someone who can't stand, but I must have been going at too leisurely a pace. I guess there will be no more reading or playing tetris whilst I pedal, just fast music!

I kind of like the idea of target heart rates - I was thinking if I find this tough & I've been on the exercise bike since I've had POTS, how on earth does someone who doesn't already exercise just start this, but I suppose someone starting out wouldn't have to pedal as fast or as hard for their HR to hit the same level. 

Today is my strength training day, & I found some ankle weights that I used to wear back when I was a real gym bunny, happy memories! I'm going to do some floor exercises with those, but I think I will still do a shorter spell on the bike tonight as I feel I'd be going backwards dropping my cardio sessions from 6 evenings a week to 3. 

Come to think about it, with Dr Levine describing his program as "mild to moderate" exercise, it's made me question if I was ever really fit at all - in my 20's I measured success in the gym as looking like Barbie. I showed up in my gear & did the time, but the reality was probably that I was naturally slim anyway & wasn't actually putting much effort into working out. Seems so silly now!

B x

[firewatcher]

I had to re-work my HR zones entirely. 220-age is not even close to accurate for me, my tested max HR was almost 20 BPM higher than that formula. IF you test MAX HR, do it WITH SUPERVISION, preferably a PT, doctor or nurse. My BP drops once I hit a certain HR and I will gray-out, but can still hear: Dr. Levine gave me tips on how to counteract the drop during exercise, like squeezing a ball in each hand. I also have a Polar monitor with a chest strap and found it very useful for tracking times and types of exercise: it has a wonderful progress/diary function that allows you to analyze you data from the computer. Even after 7 months of training, when I got to see Dr. Levine, he reworked my HR zones even higher (again under supervision.) We are a "special case" with our heart rates and PRE and orthostatic issues are always our nemesis.

[bombsh3ll]

14 hours ago, firewatcher said:

I had to re-work my HR zones entirely. 220-age is not even close to accurate for me, my tested max HR was almost 20 BPM higher than that formula.

Wow I'm the opposite - I don't think I'd be able to get anywhere near my supposed max HR for age without an ambulance ride! The way it is calculated, I found myself not for the first time glad I am not dealing with this in my teens! 

I can be exercising really hard on my bike and still well within the base pace zone. Fortunately, the first 3 months don't seem to require going beyond the max steady state, which I might just be able to scrape into the lower end of if I go absolutely flat out!

Do you/have you used a rowing machine at all? I tried one years ago in the gym when healthy but didn't like it, I found it really uncomfortable and difficult, but reading about how Levine favours this as rowers have the biggest hearts/blood volume, I've been thinking about trying it again. I found out I can hire one for home use for a trial - the "concept 2" same as the studies used.  

I am currently waiting for imaging to rule out a CSF leak due to EDS & the way my POTS started with a forceful valsalva, plus the splitting orthostatic headaches, so I am going to wait until after this as I read rowing is advised against if you have a leak, but if I've no sign of one I definitely plan to try it. I imagine it being much harder than the bike though!

B x

[firewatcher]

I started with a rowing machine, but I tolerated the treadmill pretty quickly. The Concept 2 rowers are comfortable and smooth as long as you get one that has not been beaten up at the gym, if the slide grabs or the chain is old, it isn't fun. I hope they figure out your headaches, I had to train around migraines and did not make much progress until they were better controlled. Whatever you do, protect your joints, especially once you begin to feel better and push yourself.

[p8d]

I love my Concept2!  I alternate between an upright stationary bike and rowing machine at home.  At PT I sometimes do a treadmill but the max I have lasted is 7 minutes so far.  I am thinking of getting one for at home.  I started at PT when I was really, really bad, in a water treadmill.  It was really helpful along with the strength training.  I, too, doubt I can get near my desired HR but I do do intermittent high intensity all out for 30-60 seconds then go back to base pace which isn’t too easy.

[bombsh3ll]

I am looking forward to trying the rowing machine! I had another good workout on my bike last night, however became very unwell about an hour after it which was a real blow. I managed my prescribed time & HR zones, felt OK during & really proud afterwards. I'm always lightheaded when I crawl back into the house & into my recliner from the bike in the garage, but usually feel my best all day once I have recovered. My husband and I watch TV for about an hour then get ready for bed. All was fine until I got up to get ready for bed, this is usually my most functional time of day, I get the kids' things ready for morning etc, but last night I was really hot & presyncopal, & my HR was up in the 130s. It settled to under 100 when I got in bed, and by the time I checked my BP then lying down, it was 127/83 which is about normal for me but high for lying down. 

My heart continued to pound all night with horrible adrenaline type feelings & I got no sleep at all. I didn't think I was going to be able to get up this morning, but I did, & my HR is back in its normal range, but I still feel a bit worse than my usual presyncopal, splitting headache state. 

This didn't happen after my first intense Levine protocol workout & was unexpected. I have heard people say exercise makes them feel worse in the short term & it is to be expected, but they seem to mainly be referring to fatigue which wouldn't bother me & I don't really identify with as a symptom - how does a chairbound person get fatigued?! but I didn't know to expect worsened presyncope, tachycardia, shaking etc. I had eaten a snack when I came in so wasn't hypoglycaemic. 

I am guessing this was probably post exercise hypotension/vasodilation, which I read about and seems to be a physiological response but obviously poorly tolerated in a POTS patient who is usually intensely vasoconstricted & clinically hypovolaemic. 

Did/does this happen to anyone else? 

I will be more prepared for it next time & have everything ready for the next day so that I can just go straight to bed after recovering watching TV and not expect to be on my feet at all afterward. I understand it is partially histamine related too and may also try taking a antihistamine before exercising. I would really like some reassurance that this is common & gets better. I had been so encouraged after my first Levine intensity bike session!

B x