Update - Dr. Levine's Exercise Program - I'm Nearing Completion Of The 3 Months

[futurehope]

For anyone who has tried this program or who is interested.....

I have one more week to complete the 3 month program. I have been walking on a treadmill for the heart portion of the program: there is a weight portion of the program as well. I did not need to do sitting/rowing/biking ever because I had been exercising before I started this, so I guess walking was not one of my difficulties.

The beginning was tough, because my heartrate easily went up into the desired range with minimal exertion.

Now that I am more fit, it is getting much more difficult to get and keep my heartrate in the correct range (base pace or mean steady state). I have to really increase the incline and increase the speed of the walking. That is tough and tiring to have to do that, especially for extended periods of time.

Also, as I'm nearing completion of the program, I am expected to maintain these heartrates for longer periods of time. Today was 50 minutes at base pace. That was really tough. I can do 20 - 30 minutes easily enough. Anything over that length of time, it gets tough.

Overall, I'd say after pushing through the difficulties of longer periods of time and increasing my speed in order to get the heartrate up, I'm finding that in comparison, everyday life (normal activities), are a breeze.

I mean, in comparison to how difficult it is to have a high heartrate for 40 minutes to one hour, every day life is much easier. The exercising is not easy. It is tough. I get sweaty and tired. But normal life is easier.

Also, I still fatigue easily. I need rest more than a normal person. I also may have an MCAS (mast cell) issue going on. I'm in the middle of determining that. I still feel "potsy" when standing sometimes. I can tell by the feeling in my head that the blood is pooling.

So, I am going to summarize what I've always thought, and that is....I am not curing my underlying medical conditions by exercising, I'm just making everyday life a bit easier.

For all you other Dr. Levine people, did you continue pushing yourself to do more and more difficult stuff after the first three months? Thanks in advance.

[nunntrio]

I tried the exercise program this past fall. While difficult I was able to push through the first 2 months. When I tried to do the extended BSS and MSS workout required the last few weeks I just could not push through. Like you I had to push myself so hard to maintain those heart rates that I was completly unfunction for about 24 hours after. I ended my program at about the 9 week mark. I have been trying to maintain that level but must admit I have slipped back. I can honestly say that excercist in no way came close to curing my of my sympotoms. I was able to exercise and do more phyical activity then I thought possible. My conclusion was similair to yours. I felt the exercise somewhat helped with the a small percent of my symptoms but I still have some underlying cause my POTS which until I can figure out what that is the exercise is not helping.

Thanks for sharing your experience with the program.

[ACB]

futurehope, I completed the three month protocol last summer and contacted Levine's PT for advice on how to proceed. She shared an additional three month protocol that had not been studied, but was recommended as a next step.

I did about three weeks of that protocol and my POTS sx became much worse. I also developed some problems with a vein in my calf that I'm still having now. I'm actually going next week for an ultrasound to rule out superficial thrombophlebitis. The protocol increased in difficulty in large part by the addition of interval workouts. Sweet mother of pearl! Those workouts were HARD and seemed to be inappropriate for me to try at that time.

Like you and nunntrio, my perspective is that exercise is helpful for me, but not a cure. BTW, I'm also exploring MCAS and have a call in to Dr Afrin's office to schedule an appt.

[futurehope]

ACB,

I have the 2nd three month exercise program. Yikes! I don't know if I want to do it or if I even care. I would need to be a for-real athlete, and I am not sure my body can handle it.

About 15 years ago, I could walk at 3.5 MPH for a full hour, and then go back in to my desk at work. So, at one time in my life I could do it.

The difficulty with this program is getting and keeping the heart rate in the correct zone. When I used to walk, my heart rate had maxed out to what a fit person has, and I did not concern myself with increasing it to get aerobically fit. I would walk not concerning myself with heart rate.

So, I am not sure about the next three months. They look beyond what I need. I'll see.

Good luck with the possible MCAS and Dr.Afrin.

[ACB]

Yes! I totally felt like I was pretending to be a for-real athlete. It was pretty funny. I was panting so hard during those intervals, I felt like I was in labor at the wellness center.

I just completed the initial three month protocol again and then repeated the final two weeks of it several times. Then, after realizing that sort of rigidity wasn't going to solve my problems, I finally decided to just take a more relaxed approach to working out in a similar way with the mix of aerobic and strength training workouts. I seem to be doing just as well as I was following the program.

Best wishes with your continued exercise and I look forward to reading how you decide to proceed and what sort of response your body has!

Thanks for the well wishes with the MCAS stuff!

[POTLUCK]

I have not done the Levine program but am exercising more.

If I can ask how much better do people feel who did the program? ( like 1-10 scale )

Do you go off your meds on the program or can it be done on meds?

Is the goal heart rate based on something? ( like 220 - age= maximum and 80% max for cardio training was the rate I learned before POTS )

glad it has helped everyone some!

[ACB]

Exercise seems to have helped me tremendously. I would rate how I felt pre-exercise program at about a 2 and at the end of the program at about a 7.

[Frugalmama]

If you have MCAS, excercise could definitely be triggering your mast cells to degranulate. Are you on meds to get those reactions under control?

[sarahm]

Is this protocol readily available? I am a big fan of exercise. I am currently in cardiac rehab, but I am their first POTS patient and I am curious to compare the differences. It would also help my current therapists as they are still trying to figure out how to approach my rehab.