Decided On Exercise Strategy

[futurehope]

My neurologist and I discussed the possibility of using Dr. Levine's exercise program for improving my POTS. Since my doctor is a neurologist, he would agree to send the research team the data showing my diagnosis, but is unwilling to monitor me. If I go that route, he suggested I get a cardiologist who is associated with a cardiac rehabilitation program.

I agree that a cardiologist would be the doctor of choice to be the contact point between Dr. Levine and me. But, I do not have one.

Since my neurologist has seen another study in which POTS people were using recumbant bicycles (or some such) to improve functionality, he suggested continuing what I currently began last week in the fitness center, and the other exercises I do on my own. I will be seen again in three months to see if I notice any improvement, and if he can measure any improvement via the poor man's TTT (poor man's TTT means stats sitting, then at intervals of standing for up to ten minutes).

My neurologist does not see the need to use Dr. Levine's program, per se, since he feels we can benefit from exercise on our own.

I will do my own experimenting. If after three months, I think I've reached a plateau and desire to move forward, at that point (he suggested) I will get in touch with a cardiologist to monitor me and give suggestions.

So, for now, I'm sticking with what I'm familiar with, and that is:

One of two exercise/stretching DVD's for abdominals on a daily basis.

Light free weights at home for use on the floor for biceps, triceps, pectorals and shoulder muscles.

Using some of the weight machines at the gym I have just joined (I've used them in the past (pre-POTS), and am familiar with them) , including their abdominal machine.

Using the recumbant bikes and treadmill to monitor my heartrate, speed and time.

We'll see how it goes. Personally, I do not see how I can "cure" POTS unless I modify something. Apparently, Dr. Levine is deliberately having patients enlarge their hearts. I will not do anything of the sort unless I'm under a cardiologist's care.

I said I'd check back in, so this is the latest.

[lieze]

Good luck to you-let us know how it goes.

[Miriam Poorman-Knox]

For what it's worth, participating in this extreme exercise is just asking to have setbacks. I understand dys. Can go into remission , yet is not technically cured. Doing the recumbent bike and toning and stretching is the most appropriate. I think. I would however ask card how he wants you to check HR either PRE or counting pulse Inthink Pe. Good luck. Miriam

[futurehope]

Miriam,

I've been doing all my at home exercises, plus mall-walking for years....all during POTS. At the fitness center, the recumbant bike and treadmill that I use continuously monitor heartrate because your hands are on the sensors.

So, what I am saying is, that exercise itself is not new to me. Like I said, I seriously doubt any "cure" at this point, just improved functionality. We'll see.

I was exercising on a daily basis pre POTS, and a "POTS attack" (heartrate went way up) occurred, had me breathless, and scared the living daylights out of me. Then began my quest for answers. Unfortunately, I stopped moving all together because of the fear of 'what might happen" and because I had no clue.

Since my diagnosis, I have always tried to maintain some level of fitness, so like I said, this is nothing new for me really, except for the bike and treadmill's abilities to monitor my heartrate.

Just thought I'd add that my experience has shown me that illness and stressors (like lack of sleep) can have serious repercussions and set me back for a few months. That's why I try my darnedest to avoid getting sick and to maintain an even emotional keel. If I don't, it can set me back more than it should.

Well, now that I think about it, maybe my foray into exercise is really nothing new for me, but I will stick with it and remain disciplined about it as long as I can (until the next set back).

For those wondering how I managed to do all this, I can say that at the beginning of my personal exercise routine, post POTS, I was scared out of my mind. I remained close to home, wore identifying info around my neck, and coerced my husband to be with me in case I began feeling "weird". So, after many moons of feeling weird, spacey, whathaveyou, I now think I'm capable of more than when I first began. It was scary, but necessary for me to push through the fear. It's just the way I am: PUSH is my middle name.

But.... when asked by my doctor, I tell him "I'm unchanged." Not better. Not worse.

[juliegee]

Good for you!!! I have been intermittently very fit with dysautonomia. Like every one else, I struggle to find the right balance. When I exercise, I tend to push myself beyond what I can handle. I am focusing on dialing back- run/walking-whatever feels right about 15 miles a week. For the first time, I'm also adding a yoga class offered by our local hospital's Mind/Body institute. In addition to strength training, they claim to really focus on breathing & relaxation techniques- I really need that.

I think being conditioned definitely helps. It's wonderful to find what works for you and what you are comfortable with. I applaud you for involving your doctor in monitoring your progress. Your plan does NOT sound too taxing to me. Just hydrate, hydrate, hydrate. I drink less in the Winter when I exercise outdoors, but still sweat enough to soak the clothes closest to my body. That sweat needs replacing, so be careful with that.

One thing in your post caught my attention. I was taught that when you take vitals in a Poor Man's TTT, you start in a supine (lying) position ideally for 10-15 mins. THEN, move to standing for 10 mins. That will give you vitals that will more closely mirror real life and a TTT. It's hard to find a physician who will take that amount of time. Keep us posted on your progress. When you're dripping sweat, think of us cheering you on!

Julie

[Dizzysillyak]

Hi Future,

That's great that you've been exercising for years. I'm sure it's helped you from getting deconditioned.

I was wondering if you could give me the link to Dr. Levine's exercise program. Will his info on enlarging the heart be in it ? Why is he doing that ?

I've been exercising for my OI since October. I have CFS/FM also and haven't had any relapses so far. KOW ... I started PT a few weeks ago to get some directions. Something I was doing was making my back and shoulder pain worse.

Before starting PT, I was doing leg lifts and arm extentions while using 2 - 3.5 lb weights. And some sit ups and push ups.

I have to do most of my exercises while laying down because that's when I feel my best. I haven't been watching my heart rate with a monitor but I only push myself until I can feel it start beating hard. It takes me 2 hours to complete my exercises because I have to take so many breaks.

I've been totally "healthy at rest" since October 2007 but haven't progressed past that in all these years. Meaning as long as I'm laying down and rested, I feel GREAT. But as soon as I get up, my BP drops and it's just a matter of time before I HAVE to lay down for at least an hour. I have a left bundle branch block and I'm not sure what role it's playing here either.

FWIW. The only exercise I've found so far that really helps me feel less fuzzy headed is the one where you lay on your back and lift your legs slightly off the floor. I think it helps because it gives my spine a stretch that I don't get any other way. I couldn't do this at all prior to getting my ataxia under control.

Good luck with the bike. I can't imagine doing a recumbent bike right now. I tried riding a regular bike in PT the other day and only lasted 2 minutes. Then, I was down for 20 ...

I'm not sure if this is going to help me all that much either but like you, I want to give it a try. I've been sick and mostly couch bound for 21 years now so my body is definitely deconditioned ... Besides, this is a great way to clean out lymph nodes.

tc ... Marcia

[Sallysblooms]

I thought about doing it with that program but I am better off not going to a gym. I have exer. bands, weights, elliptical mach. pilates machine at home. I can only do a tiny bit, but I know it is good to get my legs strong. My supplements and G.Free have done a lot of good, so exer. can only help. Just have to be SOOOO careful with it. Movement is very important for so many reasons. Even if it is flexing the feet up and down. My doctor said to do that. We need the circulation.

[futurehope]

Dizzysillyak,

This is the email I sent:

THR-IEEM-POTSRegistry@texashealth.org

Hi,

I will be seeing my neurologist on January 13th and would like some info to give/show him before my visit if possible. I have POTS and have tried to exercise as much as I could, but am open to a regimen that might improve my functioning.

Thanks in advance,

[futurehope]

Mack's Mom,

I have no idea why my neuro does not have me supine, and then standing? He has an examination table in the room. It never gets used. Maybe next visit I'll ask, but I suspect it is the time constraint. As it is, he comes into the waiting room with his blood pressure cuff and takes my sitting BP, then does the 10 miniutes standing. So, he is skipping the time-consuming step of having come into the examination room, lie down, and essentially do nothing for 5 minutes.

Many times I have told him that sitting is just as bad as standing for me. Also, he is aware of how to do a TTT, since he has done one of them on me. I believe it is the time and monetary constraint affecting the methodology of his poor man's tilt.

[potsgirl]

Why aren't they doing a 'real' tilt table test on you?

[futurehope]

My neurologist has already done a real one, as well as NIH (National Institutes of Health). I already have a diagnosis. My neuro is doing his version of a poor man tilt on each of my visits. I suspect, in order to save time, he takes a reading after I've been sitting in his waiting area, then at intervals when I'm standing while in his office. Then he doesn't have to "wait" 5 minutes while I'm lying down before he begins my standing readings.

[DIXZELAND]

My neurologist and I discussed the possibility of using Dr. Levine's exercise program for improving my POTS. Since my doctor is a neurologist, he would agree to send the research team the data showing my diagnosis, but is unwilling to monitor me. If I go that route, he suggested I get a cardiologist who is associated with a cardiac rehabilitation program.

I agree that a cardiologist would be the doctor of choice to be the contact point between Dr. Levine and me. But, I do not have one.

Since my neurologist has seen another study in which POTS people were using recumbant bicycles (or some such) to improve functionality, he suggested continuing what I currently began last week in the fitness center, and the other exercises I do on my own. I will be seen again in three months to see if I notice any improvement, and if he can measure any improvement via the poor man's TTT (poor man's TTT means stats sitting, then at intervals of standing for up to ten minutes).

My neurologist does not see the need to use Dr. Levine's program, per se, since he feels we can benefit from exercise on our own.

I will do my own experimenting. If after three months, I think I've reached a plateau and desire to move forward, at that point (he suggested) I will get in touch with a cardiologist to monitor me and give suggestions.

So, for now, I'm sticking with what I'm familiar with, and that is:

One of two exercise/stretching DVD's for abdominals on a daily basis.

Light free weights at home for use on the floor for biceps, triceps, pectorals and shoulder muscles.

Using some of the weight machines at the gym I have just joined (I've used them in the past (pre-POTS), and am familiar with them) , including their abdominal machine.

Using the recumbant bikes and treadmill to monitor my heartrate, speed and time.

We'll see how it goes. Personally, I do not see how I can "cure" POTS unless I modify something. Apparently, Dr. Levine is deliberately having patients enlarge their hearts. I will not do anything of the sort unless I'm under a cardiologist's care.

I said I'd check back in, so this is the latest.

Are you in the Dallas/Ft. Worth area? I have seen Dr. Levine and now follow up with Dr. Amer Suleman, a cardiologist for my POTS. He has helped me very much!

[futurehope]

Dixzeland,

No, I'm not. But, believe me. if I were, I would be seeing Dr. Levine. I mean, why not? If someone could improve my life, I would go for it.

Like I said, I'll continue what I have already begun on my own. If, after three months, I feel there is no improvement, I will consult with a cardiologist. I will need a cardiologist to be supervising my use of Dr.Levine's program.

Praise God for your wonderful, caring, supportive and knowledgeable doctors!