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Dr. Levine's Excersize Protocol


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I grabbed this info off someones pots blog and then promptly lost the blog, so apologies if the writer is on this site!

Has anyone tried this and are you willing to share the exercizes?

'The Institute for Exercise and Environmental Medicine has ongoing medical trials, some of which relate to POTS and Orthostatic Intolerance. Also, Dr. Benjamin Levine and his team at the IEEE have started an international POTS Registry to better track and understand POTS in the long term. You can join their Registry for free with the help of your local doctor. You do not have to visit their office in Dallas, Texas to be part of the Registry, but they do see patients if you live in the area. If you join the Registry, they will also provide your local doctor a specific POTS exercise protocol, and they ask that you do a 10 minute standing test before and after several months of the exercise program. This will help them better understand what impact exercise can have on POTS. They did a controlled study at their Texas lab, and found that MANY of the POTSies who completed the exercise protocol were significantly improved - some did not even meet the criteria for a POTS diagnosis by the time they were done. This is wonderful, so I am in the process of signing up for this Registry and exercise protocol with my local doctor's assistance. If you are interested in the Registry or the Exercise Protocol, have your local doctor call, e-mail or fax a note to Dr. Levine's team and they will send over the Registry application paperwork to your doctor. Their contact info is:

RE: POTS Treatment

The Institute for Exercise and Environmental Medicine

7232 Greenville Avenue, Suite 435

Dallas, TX 75231

Ph: 214-345-4607

Fax: 214-345-4618

E-mail: THR-IEEM-POTSRegistry@texashealth.org'

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I did sign up for this program and from my experience it doesn't work. Did you know that you can't be on any medications for pots while doing this program? While I agree that exercise is an important part of our plan to try and improve, it is not the cure for pots, in my humble opinion.

Maggie

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Did it help at all? I didnt know you cant be on any meds. i suspect that bit is for research purposes though. also, do you mind if i ask about the dna test for drug interactions? I react to danm near everything a western doc tries to shove at me these days. I wont take any and am terrified that if im ever admitted and unconscious i wont make it out of the hospital. the last pill i took was an antibiotic and it brought the pots back! course it was an antibiotic that took it away too, so i guess there is some irony in there... anyway, im very curious about that test if you wouldnt mind sharing...

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My doc got a hold of this at my insistence through a colleague; I didn't join the study. I tried it. Didn't quit my meds as exercise can trigger flares for me. Could not get my hr up high enough (the meds, I guess). Also, my doctor investigated and believes the premise on which it is based is faulty (something about our hearts being too small).

That being said, exercise has helped me as much as anything, so I highly recommend any kind of exercise.

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Exercise is the cornerstone of most POTS patient's treatment programs but for me without medication it takes a lot longer for it to work than with medications. ofcourse, until we have a better understanding of the causes of POTS its hard to make a claim that anything improves the condition other then subjectively (unless we presume that tachycardia alone can be used to measure symptom presentation)

For me, i have found that when my blood volume is up I cope with exercise much better. i also take blue berries when I can and do lots of stretching to avoid excessive cytokine elaboration and oxidisive stress. Why? Well i just assume it might help :)

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For me, i have found that when my blood volume is up I cope with exercise much better. i also take blue berries when I can and do lots of stretching to avoid excessive cytokine elaboration and oxidisive stress. Why? Well i just assume it might help :)

The same thing was true for me re: blood volume. I tried for 10 1/2 months to exercise, but couldn't get beyond 6 minutes on the recumbant bike. I was completely exercise intolerant (with nasty side effects/heart rhythm issues/severe dizziness/long recovery time, etc) until I started Florinef. After 5 weeks on the med I was able to exercise and I'm up to 25 mins on the upright exercise bike and last week I walked around the block without squat breaks! The second time around wasn't as successful...but it's still a big improvement. No amount of salt and water intake helped me with this before the med. My doc did look into the Levine protocol for me as well months ago, but I know I would not have been able to do it. My EP/cardiologist and internist agreed that I should just work slowly/at my own pace.

There are people who have reported success with Levine's protocol, but some have said that as soon as they stopped exercising, symptoms return.

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Yes, I have completed Dr. Levine's protocol--twice. It helped me greatly, but did not cure the problem. The reason I completed it twice is that after I completed it the first time, my tachycardia was much improved and a local cardiologist then questioned the diagnosis and I went off the 10 gm sodium diet. My weight then dropped from 104 lb to 97 lb in 5 days (due to hypovolemia) and I got very sick again, so sick that I had to start the program back over. As Dr Grubb says on his hyperPOTS video on YouTube, exercise is extremely important in the management of most POTS patients. If you just lay in bed (which is the only thing you feel l Ike doing if you have severe POTS), that will make you worse which will make you want to lay in bed even more--a vicious cycle. I get severe "episodes" where I can't stand or sometimes even sit without vomiting. As soon as I get past the most severe symptoms, usually one day, I make sure to get right back to exercising. I workout less intensively and only do for example the bike rather than elliptical until I start to bounce back, usually a few to several days and I am able to do the more intensive, upright workouts again.. I have heard that dr. Levine's research study has completed and you can get the protocol online. You do not have to go off meds, that was just for research purposes and even then, you could stay on meds if needed. The protocol is difficult. In the beginning, you will feel worse, particularly after the MSS workouts. It has, however, helped many patients tremendously. There is a great video testimonial from a POTS pt on You Tube, called POTS--how to get better. Good luck.

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Exercise makes my POTS worse, but I'd be open to this program. My HR has trouble going back down once it gets elevated from exercise. I have high blood pressure, so stopping any of my meds would cause my BP to spike.

Mine does too. My orthostatic tachycardia is worse, and my Hr when changing position sky rockets. However, the next day it's back down lower than normal. I told my husband I have irritable heart syndrome lol.. I swear anything that gets it going .. Whether that be standing up or running makes my heart irritated & it doesn't want to slow back down. I've read it's a sign of being out of shape. BUT I do spin atleast twice a week for an hour & I don't think I'm that out I shape. Or it could be from overtraining.Hmmm....

On the topic of exercise, I've seen great results! My standing HR was 120 in February, now it's 85. Im now medfree.. So the only thing I can blame it on is exercise

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Weatherman, some people take a month or so to build up to the Levine protocol. If I remember correctly, it starts with about 50 mins on the recumbent bike--10 min warmup, 30 mins at your target HR (which of course will be more difficult to determine in your case since you are on metoprolol...you will probably just need to go off "perceived exertion" instead) and then 10 min cool down). It is the graded nature of the program that is important. Graded both in terms of level of exertion, time of exercise, and also starting out with all exercises being done recumbently, eg recumbent bike, rower, or swimming and seated weight lifting to strengthen your leg muscles, progressing to upright bike, and finally elliptical or walking.

I had worked out all of my life and also just made myself worse in the beginning trying to exercise on my own by doing too much too soon.

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Once I started to exercise I noticed my fair days turned to good days...it progressed from there. The bad days were still as bad and I had the urge to blame the exercise but really for me POTs does what POTs wants to do to my body. I couldn't have done it without meds at the time - currently I'm med free. Also I started with low weights/low reps resistance training. I added cardio a little later. I am about 80-85% better. The drug I used was hydrocortisone....I weaned without adrenal difficulty - (lucky) - but I liked how my body felt on it. I miss it. I also think it wasn't the best steroid to chose but it was the one that was prescribed and it worked. But back to topic - for me if I didn't keep re-attempting the exercise I would not have gotten better.

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