Dr Levine Exercise Program

[handmadebyemy]

I've heard a few people mention Dr Benjamin Levine's exercise program / clinical trial. From what I found online he is a cardiologist in Texas. Does anyone have any info on this or is anyone following his protocol? From what I've heard its quite effective.

[Guest humanb4monitor]

wow--yes--I just potsed on 'Chit-Chat" bout weight loss!

Especially when we feel soooo TIRED!

What is this?

[heathmcev]

My EP has brought up that guy's work with me. I think the jist is that hardcore cardio exercise helps enlarge the heart, which will in turn help our symptoms in the long-run, and stop the deconditioning which we so often encounter as a result of having POTS. Don't quote me on that as I haven't seen the study, but it's what he suggested the study says. Even the thought of me doing cardio right now is laughable since walking the dog wears me out!!

When I asked my POTS neuro about the study he said that it's a good concept, but with my fatigue levels & adrenal insufficiency I have to be careful not to deplete my reservoirs... so he recommends small bits of exercise throughout the day rather than going full-on all at once.

If you do find Dr. Levine's study please post - it would be interesting to read.

dizzyde

[Birdlady]

We had a small discussion about this in the thread here, but it is probably better to post in here so we don't hijack the thread further lol

I think the study was rather disappointing to be honest.

[handmadebyemy]

I did find out some info from POTSDad:

1. Send an email to THR-IEEM-POTSRegistry@texashealth.org saying you would like to apply for the POTS Exercise Training Program.

2. They will send you an email which you could take to your doctor. Your doctor must then directly request the application package.

3. Once your doctor receives the registration package, you setup an appointment. Your doctor will have instructions on how to do the 10 minute stand test, which your doctor must complete.

4. You and your doctor must complete and sign a number of forms and then your doctor sends in the forms for processing.

I emailed them and just got a response back (took about a week) and send it to my Dr to see what he thinks of the protocol and if he is willing to help me get into the program. I used to feel the same way about exercise - why would I exercise when I don't even have enough energy to do my laundry half the time? But as strange as it seems, exercise has given me much more energy. I'd recommend starting with swimming since its a great workout and not too difficult. If I get into the program with Dr Levine I'll let you know my thoughts.

[TXPOTS]

You have to stop all medications prior to the program, so this may not be an option for everyone. I hope the protocol will be available to ALL patients in the future.

[lieze]

That part about enlarging the heart doesn't sound right to me?

An enlarged heart from everything I've been taught isn't a good thing necessarily.

I think it would be beneficial to increase stamina and endurance but I don't want to change anything structurally about my heart. I already on the first echo had some slight thickening of the left ventricle and valve, I don't want to make my heart work too hard, I just want to strengthen it if possible. I imagine that damage possibly occurred during my pregnancies. It was so difficult at the end with all the extra weight and fluid. I would get short of breath after meals etc etc. and do a lot of swelling especially in the evenings. So I'm not sure my normal state strains my heart the way my pregnancies did.

The same with lungs. I was having so much shortness of breath and tightening up sensation of my lungs in the beginning. It was for instance a strain to read a book to my kids without feeling very oxygen depleted by the end. Also phone conversations were difficult and yelling at the kids was hard. Since that time my lung capacity has improved because I have continued to exercise my lungs. It isn't 100% again but much better than it was.

[abbriggs]

He is my dr. While the program helped me for a while and it did help me to be able to function with out the use of medications. I had a huge crash and had to go back to meds. He really believes that all POTS is due to deconditioning, period. When he realizes that his program will not help you he pretty much tells sorry there is nothing I can do for you. You just have to get used to it. I was really disappointed with the way he went about it.

[sue1234]

Abriggs--THANK YOU for that info. I am from Louisiana and had called months ago to possibly go see him. It is a huge effort for me to travel(6 hours) and spend days away doing appointment stuff. I had this recurring thought in the back of my mind, thinking exercise is just not going to cure me. I had been walking a few miles almost everyday before POTS hit abruptly, and I know it is not from deconditioning. I due realize after four years of alot of sitting that some exercise would definitely benefit my now-deconditioned body, I honestly don't think it is going to make POTS go away.

I guess that recurring thought is what kept me from ever having a local doctor see if they could get me in.

[TXPOTS]

He is my dr. While the program helped me for a while and it did help me to be able to function with out the use of medications. I had a huge crash and had to go back to meds. He really believes that all POTS is due to deconditioning, period. When he realizes that his program will not help you he pretty much tells sorry there is nothing I can do for you. You just have to get used to it. I was really disappointed with the way he went about it.

Did he perform a MRI of your heart that showed your heart was smaller?

I would think a MRI of the heart would answer this. I don't think the standard ECHO necessarily measures dimensions of the heart chambers?

Also, my husband spoke with him, and he was not saying POTS patients were deconditioned, but something had occurred to change the size of patients's hearts. In predisposed individuals, this change can occur within 24 hours based on his research.

[TXPOTS]

I don't think Dr. Levine is accusing patients of being lazy or deconditoned, but he is saying that patients have a smaller heart than the rest of the population (only one or two standard deviation difference). The reason is unknown, and many patients were very active before POTS. I don't have an opinion yet as to whether he is correct or not. Personally, I have not been cured by exercise, but I have never gotten the impression from his team that patients are lazy, deconditioned coach potatoes.

[lieze]

This maybe getting off track but I was messaging an acquaintance on the internet trying to explain to her my health issues.

She immediately said that she had learned in biology years ago that a virus has the capacity to knock out like 90% honestly I don't remember the percentage of a cells capacity for respiration.

I don't know for some of us if this is why we see improvement in time. Since cells are always regenerating, once the "injured" cell dies and a new one is produced it should function normally correct?

I'm not sure how much this even applies to POTS.

It is difficult for me to comprehend how I was healthy (except for a bit fatigued) no problems with tachycardia etc.

And suddenly after chicken pox I developed these symptoms.

How did I instantly become deconditioned and did chicken pox actually do that much damage to my nervous system?

It's just all difficult for me to comprehend at this point.

[abbriggs]

For me I was fine one day then I got pregnant with my 2nd child and all **** broke loose. My pots literally started with in days of conception. For me I truly believe that I have some sort of virus or something underlying in my body that when my immune system lowered its self so it could sustain the pregnancy the 'bugs' were able to take ahold. After I have been on antibiotics for a few weeks I always feel so much better for the next month.

I was on bed rest at the end of my pregnancy for about 4 weeks. This is what they thought led to decoditioning for me. I don't agree since my pots started at the beginning of my pregnancy not the end.

[Crow]

Have they found the smaller heart in people with POTS from Ehlers Danlos?

I get regular echocardiograms and no one has ever mentioned an odd-sized heart.

[Birdlady]

During the study they performed MRI's of the hearts to get dimensions. I have no idea if an echo would show the same things. Mine have always been "normal" too.

[abbriggs]

I am lucky enough to have an EP in Austin that was one of Dr. Levine's interns so I at least have a dr. that knows about POTS. They never did an MRI. All my echo's have come back normal as well. I have lots of other neurological symptoms. So for me I really believe that there is an underlying cause. I know I will find it one day. Just have to stay hopeful. I am thinking about long term antiobitics. If I feel better after a few weeks of use I am wondering how I would feel after a few months of use?

[lieze]

Yeah I think mine is normal too.

I've had multiple echos and then during the ep study they put a dye in the heart and view it on a screen as they hunt and pick through it. It looked like a perfectly normal heart to me??? And I guess to my cardiologist too. I had to keep looking away because it was a bit odd to watch all those wires going up into it.

That is the one strange thing about all of this is I'm told over and over there is nothing wrong with my heart-okay correction.

I do have some normal abnormalities that have occurred over the years but nothing that should be causing these symptoms I'm having. There is another source to the problem and my heart just reacts to it. (gets tachy)

[roxie]

Abbriggs: did you continue exercising after the study?

How much of an improvement did you see?

How long did the improvement from the program last?

[lieze]

Those were my same thoughts!

Don't give up just because you didn't fit the parameters any longer for the group.

Keep trying to increase your endurance if you can without pushing yourself too far.

Those words, "sorry there is nothing I can do for you" are so discouraging.

We don't have to let it become our reality though that nothing will help us.

We can't give up.

[KristinL]

I am so curious about Dr. Levine's program. I was diagnosed with POTS post viral myocarditis. Like many of you my echos are normal but symptoms still present. I too was NOT deconditioned prior to the virus ...I was training for a marathon. I can not say that I am not deconditioned now though

I do worry about my heart now because my doctor (Dr. Grubb) says my heart will never be the say post virus...he compared it to a broken bone and because it was broken it will never have the same strength as it did prior to the break...so when I get the chest pain when exercising I tend to back off and not push. I am wondering how that is going to work with Dr. Levine's protocol? Do you have to push through to get to the next level?

I wonder if Dr. Levine's protocol can make a lasting difference? I just want to know more...

Thanks for starting this discussion!

[roxie]

Kristen: my plan is to start at a more manageable level for my body and build from there. Reading about heart rate zones and stuff there is absolotuely NO WAY I can row for 30 minutes with my heart under 100, my resting hr is like 95 just sitting up puts it over 100

[Mito Momma]

I don't think Dr. Levine is accusing patients of being lazy or deconditoned, but he is saying that patients have a smaller heart than the rest of the population (only one or two standard deviation difference). The reason is unknown, and many patients were very active before POTS. I don't have an opinion yet as to whether he is correct or not. Personally, I have not been cured by exercise, but I have never gotten the impression from his team that patients are lazy, deconditioned coach potatoes.

My "prescription" for a cure was to exercise. When I was diagnosed my docs said that I would slowly get better over the course of a few months with exercise.

Yeah, if I'm able to exercise!

You said you have not been cured by exercise... What exercises have you done to try to help? Are you on Dr. Levine's program?

[Birdlady]

After reading the study it's not as bad as I first thought. I posted in the other thread...

I think a lot of us are starting off with exercises that are not going to be helpful. I'll be the first to admit that on days where I exericse, I usually over do it! Then a day later, I feel like crud and I don't' want to exercise. The key is to do exercises that do not require you to be upright and then slowly go from there.

My husband bought me a recumbent bike years ago because I always wanted to exercise but he was afraid of me being on an upright bike. Now I just need to get my butt back on it and start to work my way up. I am starting very very slow and only doing 5-10 minutes 2-3 times a week.

[sheba33]

For me I was fine one day then I got pregnant with my 2nd child and all **** broke loose. My pots literally started with in days of conception. For me I truly believe that I have some sort of virus or something underlying in my body that when my immune system lowered its self so it could sustain the pregnancy the 'bugs' were able to take ahold. After I have been on antibiotics for a few weeks I always feel so much better for the next month.

I was on bed rest at the end of my pregnancy for about 4 weeks. This is what they thought led to decoditioning for me. I don't agree since my pots started at the beginning of my pregnancy not the end.

This what happened to me.

[handmadebyemy]

I started my paperwork today to get enrolled in the program. I'm anxious to start.