Has Exercise Helped You? Levine Protocol

[stephsurf]

Hello,

Just interested to see who has had beneficial results from exercise, I know there are a number of factors which have contributed to people's recovery but can any of you say exercise alone has had a considerable impact?

I am about to start an exercise program at my hospitals gym and have also purchased a rowing machine (as recommended by my cardiologist) to kick start this. Has anybody else had any positive benefit from the Levine protocol as well?

The problem I have to overcome at the moment is the horribleness that I feel after and especially the day after (or for a number of days after) I do even minimal exercise. I am trying to ascertain whether the gain outweighs the pain, pretty much, because I am happy to feel worse for now if I know that in a months or so's time I will at least see even the hint of improvement.

Any experiences shared will be appreciated!

[targs66]

I have neurally mediated hypotension and chronic fatigue, so my experience may not be that helpful, but here's my 2 cents worth... I do find that doing even minimal amount of exercise can make me worse for days, like you said, but I was getting increasingly worried about my deconditioning. I felt like anything at all would help, so I just started doing what I can manage a few years ago, which was usually - literally- about five minutes of pilates type exercise lying down on the floor. This was several years ago, and I'm pretty religious about doing even a few (20) sit ups, some leg exercises and stretching every day. I tell myself - I can manage five minutes, and find it sometimes leads to 10 or even 20 minutes of exercise. I try to walk when I can, but it can definitely tip me over the edge into "now I need a few days to recover" if I overdo it.

I guess my point is that I do what I feel I can do on the day and listen to my body - I feel like if I tried a prescribed regimen, it would not offer me that flexibility to "listen to my body" and stop when I need to.

On the plus side, even tho I'm unfit from a cardiovascular point of view, I've definitely noticed improvement in strength and how much I can do!

Good luck, and keep us posted!

[Goschi]

Let my put it simple and short:

As soon as I was able to tolerate some kind of exercise, I started and benefitted (and still do) from exercise.

Before I could tolerate it, it made me worse and worse, whenever I tried to push thru.

For me personally, it is as simple as this.

[handmadebyemy]

I did Dr Levine's exercise protocol a few years ago. I stuck to it faithfully for about 4 months but once I got to the treadmill stage I hit a wall where my heart rate wouldn't cooperate and I couldn't finish the program. I was feeling some positive benefits before that, but it was quite a time commitment! It took me about 3-4 hours per day 5 days per week since I don't live near a gym so it was the time aspect of it that ultimately made me quit.

Now I have an exercise bike at home which I do several days per week for about 20 minutes which seems to help marginally. Its definitely good for my legs since I've lost a lot of muscle tone in them from wearing compression stockings daily for 5 years.

I hope you have success with the protocol!

[stephsurf]

I did Dr Levine's exercise protocol a few years ago. I stuck to it faithfully for about 4 months but once I got to the treadmill stage I hit a wall where my heart rate wouldn't cooperate and I couldn't finish the program. I was feeling some positive benefits before that, but it was quite a time commitment! It took me about 3-4 hours per day 5 days per week since I don't live near a gym so it was the time aspect of it that ultimately made me quit.

Now I have an exercise bike at home which I do several days per week for about 20 minutes which seems to help marginally. Its definitely good for my legs since I've lost a lot of muscle tone in them from wearing compression stockings daily for 5 years.

I hope you have success with the protocol!

Oh whilst you mention about the compression stockings, do you also work out with the compression stockings on or have you been advised against this?

Thank you for your reply too!

[stephsurf]

Let my put it simple and short:

As soon as I was able to tolerate some kind of exercise, I started and benefitted (and still do) from exercise.

Before I could tolerate it, it made me worse and worse, whenever I tried to push thru.

For me personally, it is as simple as this.

Thanks for your reply Goschi. I feel like sometimes if I just push through I actually feel better after the exercise, but I am interested to know whether I can just get some sort of long-term goal out of it.

[futurehope]

I did Dr. Levine's protocol, as well as my own exercise regimen for three years. I was getting worse. I felt extremely weak and debilitated and finally went to a heart doctor to have myself checked out. Exercise has never benefitted me other than it helped me to exercise, but that did not translate to benefitting my daily living.

So as of right now, I've quit. I will be talking about it to my cardiologist. Also, I am noticing marked improvement in my spaciness and in my weak, debilitated feeling by wearing 20-30 hg compression hose. I guess more blood is getting to my brain? So, obviously my circulatory system could use some help.

So, for me, exercise resulted in nothing noticeable except the ability to exercise.

BTW, through an bicycle exercise stress test, the cardiologist noticed a deficit in my body's ability to increase stroke volume during exercise. For whatever that is worth, I guess my body cannot compensate for the increased needs during exercise.....and this was after exercising religiously for 3 straight years. So there you have it.

[imapumpkin]

i don't know levine's protocol but I know that when i am feeling up to it, exercise is helpful and i have definitely benefited. when i am very fatigued, it makes me worse and "pushing through" it is simply not worth it.

before my POTS flared up and my only symptoms were tachycardia and mild fatigue and I was fully functioning (working, going to school, exercising with no interference from POTS) I found that if I went a few weeks without getting to the gym, my fatigue got worse, so I'd start going to the gym again and I would feel better, and I never was set back afterwards.

Now that my POTS is flared and I'm not fully functioning (unable to work, wake up before noon, be on my feet for the whole day) I only go for short walks and do recumbent bike for 10-15 min a few times a week. If I do this on my good days, I feel the benefits of the endorphins, the toning of my legs to help prevent pooling, and a tiny boost in energy.

[handmadebyemy]

I did Dr Levine's exercise protocol a few years ago. I stuck to it faithfully for about 4 months but once I got to the treadmill stage I hit a wall where my heart rate wouldn't cooperate and I couldn't finish the program. I was feeling some positive benefits before that, but it was quite a time commitment! It took me about 3-4 hours per day 5 days per week since I don't live near a gym so it was the time aspect of it that ultimately made me quit.

Now I have an exercise bike at home which I do several days per week for about 20 minutes which seems to help marginally. Its definitely good for my legs since I've lost a lot of muscle tone in them from wearing compression stockings daily for 5 years.

I hope you have success with the protocol!

Oh whilst you mention about the compression stockings, do you also work out with the compression stockings on or have you been advised against this?

Thank you for your reply too!

They didn't have a good answer for me when I asked that question. When I did the program initially for the 4 months I did the exercise with the stockings on. I tried to get back into it later that year and tried without stockings just to see it if made a difference. I'd say I had more exercise endurance when I wore the stockings

[ramakentesh]

Once you realise that POTs and OI comprises of probably 40+ different disease processes you realise that works for some may not for others.