Levine Exercise Protocol - now available online

[bombsh3ll]

Anyone interested in the Levine protocol who hasn't been able to access it through their healthcare provider - it is now publicly available from the following website:

https://sites.google.com/site/patientcarejs/levine-protocol

B xxx

[Clb75]

Thanks for posting this. I’m starting physical therapy next week to help me get an exercise program together. I’ve heard the protocol is hard but some people have had some good results.

[bombsh3ll]

I was not able to progress through the full thing but found it helpful to customize to my abilities & equipment that I have. For me the heart rate zones were an issue as it seems to start from the assumption of a high resting heart rate (therefore a relatively low level of exertion would take you into the required zone), which wasn't the case for me, however you can use perceived exertion instead. 

I just thought it would be helpful to let anyone know who might be looking for it as it is much discussed & until now remained a big mystery to anyone who didn't get a copy through their provider. When I got mine it specifically forbade sharing, but now that it has been released to the public I can see the sheets are exactly the same as what I received, so it comes raw & not already individualized. 

Good luck with your PT.

B xxx

[Pistol]

1 hour ago, bombsh3ll said:

I was not able to progress through the full thing but found it helpful to customize to my abilities & equipment that I have. For me the heart rate zones were an issue as it seems to start from the assumption of a high resting heart rate (therefore a relatively low level of exertion would take you into the required zone), which wasn't the case for me, however you can use perceived exertion instead. 

I am very exercise intolerant and take many medications for my tachycardia and hypertension, hence my HR does not go up very high any longer. I started using a rowing machine daily and I know I hit my limit when I get short of breath and my heart beats out of my chest - but the actual rate rarely goes above 100 from exercise. My current limit is 1 minute and 15 seconds when I feel I cannot go any longer, so I agree with your suggestion of using perceived exertion. If I would push myself trying to hit a higher HR I would mostlikely pass out and then have to stay in bed for several days.  

[Lily]

I downloaded it and read it with interest.  The focus on heart rate zones and the use of different zones throughout the week is consistent with various training programs I have seen in other contexts, such as training for a race.  I didn't see anything in the document about where to start if you already can do upright exercise.  Or is this protocol only for people who are quite badly off?  All my doctor told me was to do "cardio against resistance" and to work up to 30 minutes 3 times per week.  When I said that I can already do that (although I am very inconsistent at actually doing it), he said I can just exercise however I want to, as long as I keep doing it.  Now if only I can figure out how to get myself to exercise consistently....

[aelizabeth3300]

I'm terrified to exercise with my heart rate and exercise intolerance as they are right now. Light cardio gets my heart rate above 200 easily even on a beta blocker. My muscles have also been losing strength at an alarming rate despite regular activity. I don't know what to do. :(

[Lily]

Probably you should do whatever you can, even if it is only the tiniest amount of recumbent exercise.  Alternating leg lifts while lying down, add one more each day.  Something like that is better than nothing.  You might feel terrible at first, but exercise helps in a long-term manner if you're consistent.

[Yhoun]

Thank you for posting. I've been working my way through the CHOP protocol, and I'm interested to compare them.

[katyroq]

4 hours ago, Lily said:

I downloaded it and read it with interest.  The focus on heart rate zones and the use of different zones throughout the week is consistent with various training programs I have seen in other contexts, such as training for a race.  I didn't see anything in the document about where to start if you already can do upright exercise.  Or is this protocol only for people who are quite badly off?  All my doctor told me was to do "cardio against resistance" and to work up to 30 minutes 3 times per week.  When I said that I can already do that (although I am very inconsistent at actually doing it), he said I can just exercise however I want to, as long as I keep doing it.  Now if only I can figure out how to get myself to exercise consistently....

I've just been looking at this too, and it does look very similar to training plans for running, etc. I'm in a similar boat to you. I'm able to take walks with no problems, and I have been doing 30 minutes of rowing or recumbent biking 3-4 times a week (inconsistently) for the last 2.5 years. I'm thinking it might help with consistency to follow this plan, and I'm thinking of starting at month 1 because I haven't been doing any weight training, so it will still be a challenge. Since I've been exclusively doing seated exercise, I want to try to push myself to do more upright, but other than that I am not too worried about the exact mode of exercise recommended in the plan. I kind of see this as just an exercise plan more than a POTS solution. I know regular exercise has helped me, and this is a well laid out plan for increasing to a healthy level of exercise to maintain for the long term. 

[bombsh3ll]

On 8/27/2019 at 5:44 PM, aelizabeth3300 said:

I'm terrified to exercise with my heart rate and exercise intolerance as they are right now. Light cardio gets my heart rate above 200 easily even on a beta blocker. My muscles have also been losing strength at an alarming rate despite regular activity. I don't know what to do.

If heart rate zones are an issue for you - they are for me just the other way around, I would be unconscious long before my HR got into the recommended zone - you can go by the RPE (rating of perceived exertion).

Yes, this protocol was developed for people who are significantly limited in terms of orthostatic ability, I would think those who are able to walk with no problems or work out upright are not really the group it is aimed at. Of course healthy people or those with mild symptoms that don't limit their daily life can benefit from exercise too, they just don't specifically require a recumbent plan to do so.

 B xxx