Excercise And Pots

[AussieOI]

Hi Everyone,

I would be keen to hear about what sort of excercise people do, duration etc

Has anyone tried Dr Levines program?

I am trying to start some sort of excercise program - even basic walking but find I can get quite tired sometimes and my heart races!

I do think excercise could be of great benefit and would be interested to hear your thoughts.

Aussie

[Lel]

I just started working with a physical therapist, and I'd definitely recommend it as a way to begin incorporating fitness back into your life. Their expertise is rehabilitating people -- knowing how to properly progress exercise intensity per the individual. Mine pinpointed my muscular weaknesses, so we're working on that and improving my balance. PTs connected to a hospital or medical center might be more inclined to understand POTS rather than traditional orthopedic center.

I have also read that rowing machines and recumbent bikes are good for POTS people.

[Relax86]

I started in sitting...I didn't start any cardio or walking before I could do some basic arm and leg PRE's (progressive resistive exercises). I started very light. I did 1 set of 10: bicep curls, shoulder raises, knee extension, heel raises in sitting, etc... I added treadmill way later to my routine. One reason is that my resting HR has always been outta control (should have been a POTS clue) and I had such a tough time keeping it down and keeping me comfortable. Usually after an exercise attempt I would have a bad day, followed by some distinct good days - real bright spots. My cardio today is only about 15 min on the treadmill but my weight training has bumped up to quite a decent program. I just like the way my blood pumps with toned muscles and I'm not sure why. There are some very intelligent people on this forum who could probably explain the chemistry.

[jangle]

Exercise has many different mechanisms that could improve POTS symptoms. It improves your skeletal muscle pump's strength, aiding blood flow throughout the body. It regulates nitric oxide which also assists in blood flow. It strengthens venuous return which reduces tachycardia.

Which is an important characteristic. Even in normal athletes, resting heart rates decrease with endurance exercise. It is possible to modify one's tachycardia through exercise alone.

In addition, exercise boosts parasympathetic control of the heart, so it directly affects the autonomic nervous system. It also has regulatory roles on the Renin-angiotensin-aldosterone system.

It also lowers serum norepinephrine levels and raises blood volume.

In short, exercise is probably the best treatment for POTS there is.

[Relax86]

And there you have it.

[bustersacc11]

Dysautonomia for me the past 5 years has made it hard for me exercise consistently. I will go periods when I can start on a recumbent bike and work up to a brisk walk and weights. Then I will have a relapse and quickly get deconditioned and have to start all over again. But I always keep trying to exercise.

I have tried Dr. Levines program but I do not have POTS. My dysregulation comes with slow heart rate and high blood pressures / surges. I used his program as a guide. There was no way after 2 weeks of exercising that I was going to be able to do 20min of recumbent bike and keep my HR in 140-150bpm. I was having to go from 40bpm to 150bpm and it was exhausting. Nevertheless, his program certainly will not hurt to try, if interested.

I used to work in surgical ICU as a nurse. If they were not on a breathing machine and had activity orders to get out of bed and walk. THEY MEANT IT! Even back in school we learn the benefits of exercise BUT we were drilled on the consequences it can have on your body if you don't do anything. Whether it is dysautonomia, cancer, heart disease, having a surgical procedure, etc. laying around has no benefit. If it just means doing range of motion exercises in a chair or even leg muscle exercises in bed. Do something.

Science behind exercise outlined above I agree with. I recall Dr. Biaggioni simply shared with me that with exercise you are giving your engine (ANS) a tune-up. Once that tune up (re-regulation) takes effect the engine is running on all cylinders correctly again. Take it slow, find what works for you, but never stop trying some sort of exercise even when you may think it is nothing.

[seattle chris]

I do cardio on the elliptical, stair climber and stair master. I also put my road bike on an indoor trainer in the garage (had just bought the bike before the onset of my symptoms last summer). For hydration, I drink plenty of water with Nuun tablets, and sometimes an added tablet of sodium chloride. I typically limit my routine to 30 minutes as I get real fatigued beyond that point and see diminishing returns. I also lift weights several times a week and use a combination of free weights and weight machines, but have eliminated lay flat routines such as bench press as I felt real disoriented after trying these. In most cases I feel physically and mentally better after my workouts.

I used to run, hike and ski extensively, but have had to stop these activities. I have hope that someday I may able to resume these activities again.

[Mydoggielovesme2]

AussieOI, I have been working with a physical therapist for about 4 wks now. It was very hard to begin with. I think the main thing is to start out slow, don't get discouraged on bad days, and stay VERY hydrated. There are days when I can do 30 min, and there are days 15 is my bodies max. She has me do the recumbent bike, and leg exercises. Bike for aerobic, legs for strengthening muscle for better blood flow return. As others said, try to do something every day. As for Dr Levines program, maybe someday, but I'm so not there yet.

[AussieOI]

Thanks guys for your responses - much appreciated. I will definitely start an excercise program.

What target heart rate should I be training at? Does anyone know what Dr Levine's program recommends?

[Lel]

I used to run, hike and ski extensively, but have had to stop these activities. I have hope that someday I may able to resume these activities again.

I used to run, bike and hike extensively ... and have had to stop. I too am hopeful. Can anyone out there speak to success on regaining past fitness? I know we all are different, but it's nice to get some positive news stories some times : )

[Racer]

I seem to be out of the norm, in that I was a elite level athlete in peak shape before my symptoms forced me to cut back on exercise.

Up until a couple years ago I raced road bicycles and was fit enough to keep up in small pro category races.

Things slowly got to the point that I couldnt handle symptoms the day after a hard workout. I was to the point of not being able to get out of bed in the morning before I decided I need to cut back. Cutting back to 3-4 days a week and limiting myself to moderate workouts helped even things out.

So, intense exercise made things worse, but being fit probably means that things are not as bad as what they could be! Take this with a grain of salt though, since I am not sure of my dx.

What target heart rate should I be training at?

It really depends on if you want to exercise your aerobic or anaerobic systems. I would start with your aerobic system, since this is your main endurance system. The anarobic system kicks in for short hard bursts, but then you must rest when you "hit the wall". To effectivly train with target heart rates, one needs to know there personal lactic threshold. The lactic threshold is the point that you reach your aerobic limit, and you body starts building up lactact acid. Once your body builds up to much lactic acid, your body forces you to take a rest. To train your arobic system, you want to train in a target heart rate near (but below) your threshold.

Limitations aside, any "canned" workout programs you find, is not a good idea in my opinion, since they do not take into acount your base physical condition. This Dr Levine might be a great guy, but I am highly skeptical of any exercise "proticol", since a program must take into accont more then the syndromes/conditions a person has. Technigue is just as important, since pedaling a bike at 20rpm vs 100rpm might mean the difference between aerobic or anerobic conditioning. Unfortantly, Dr Levine will not be at the gym to monitor your technique, exertion level, or to test you. I would suggest at the least getting a personal trainer, since most will be able to give you the proper testing to properly exercise with heart rate. If you go for a personal trainer, look for one with a degree in a exercise science or equivelent health degree.

[Miqual]

I was a lifetime bicycle commuter, 5-6 day a week exercise type person mixing weightlifting with cardio and spin classes, and a hardcore downhill skier in the winter before this second outburst this last 2 years. Went through the standard deconditioning at first as I was down to doing nothing. Started getting back first through daily stretching and light walking (as much as I could handle before getting too dizzy). But started doing mostly floor based Pilates as I started feeling a bit better. Had seen here on the board in a previous exercise posting a link to the Blogilates pilates channel on Youtube someone had put up, and slowly started adding short Pilates videos from there into my daily routine. Little by little I was able do do more and more, and now have my bike up on a indoor trainer in the garage and slowly upping the time on it. 20-30 min is the max and can sometimes blow me out pretty much for the rest of the day but symptomatically, I'm doing better when I keep on those routines. I tend to catch cold/flu's ALOT this winter, and when I step back from working out due to that, I notice symptomatically with the Dysautonomia symptoms, things tend to start acting up more and more the longer its been since I workout

[badhbt]

My neurologist told me that dysautonomia tends to hit the athletic people. I wonder why that is? I was in the best shape and was working out 5-6 days a week pretty hard.

I have started doing cardio again, but nothing like before. I am slowly working my way up. I started lifting weights and doing floor exercises, but I put a timer on and don't go over 10 minutes right now. I sometimes start working out and I feel good, but then I do too much and pay for it.

All I can say is start out slow and add a little more each week...every little bit counts!

[AussieOI]

Thanks guys for your replies - so helpful.

I went walking today for 30 minutes which was good and I am going to try and incorporate walking, swimming, recumbent bike, tilt training and stretching into my routine.

I think the key is to pace yourself. On bad days I am not going to push myself to walk a lot if I feel bad but perhaps do excercise sitting down.

It is a bit scary though when your heart rate soars when just doing basic walking but I suppose you just have to accept that that the way it's going to be.

It's also important to try and get your confidence back and to try and take small steps at a time.

[ramakentesh]

After my second POTS relapse I exercised to the point where I was fitter than ever before in my life and it was the time that I basically felt that I had cured my POTS through exercise. It had a massive impact on symptoms back in 2005-2008.

But since about 2008 Ive had a few worse relapses for what ever reason and Ive had more trouble getting back to that level of fitness. If I go too hard to early I pay for it rather than feeling benefit. I can still run quite often between relapses even up to 5kms three times a week for about two years without too many problems but Im not as convinced that its a magic cure in my case any more. It certainyl didnt stop me getting a relapse unfortunately and when I do I have to stop and go back to square one exercise wise which is very annoying because I lose all my fit looking legs and arms, etc.

[Lel]

Thanks guys! Cheers to success!

Do you ever have times when your dysautonomia symptoms hit harder after you're done working out? Sometimes I judge that I need to stop or cut things back. But other times I'll go for a run and deal only with the typical fatigue and joint pain, but then post-workout wham! Dizziness and lightheadedness hit hard. I haven't figured out a way of predicting when post-workout POTS will hit and when it won't. I keep all walks/jogs at a vary low intensity level, and there doesn't seem to be a direct correlation to distance. A similar phenomenon is happening at my physical therapy. Any one else with experience or advice?

[Racer]

It is a bit scary though when your heart rate soars when just doing basic walking but I suppose you just have to accept that that the way it's going to be.

I would say this is the norm for people in general who are not very fit! When I am working with someone, I would be scared if they couldnt get there heart rate to soar. You should always be able to get your heart rate to max, just as you get more fit it should take more intensity to get to that point.

I haven't figured out a way of predicting when post-workout POTS will hit and when it won't. I keep all walks/jogs at a vary low intensity level, and there doesn't seem to be a direct correlation to distance. A similar phenomenon is happening at my physical therapy. Any one else with experience or advice?

How do you judge your intensity level? It is a proven fact that judging intensity level on how you feel at any givin time (percieved intensity) is usually false. Percieved intensity and actual intensity based on something like a heart rate monitor will ususally end up being very different.

If you want to try to find a direct correlation, I would suggest trying to exercise at different heart rate based intensity level, and comparing that to how you feel after. For instance, you could try to set a taget hr for a workout, like a easy intensity level, stay in that target range, then see how you feel the next day.

[ramakentesh]

Thanks guys! Cheers to success!

Do you ever have times when your dysautonomia symptoms hit harder after you're done working out? Sometimes I judge that I need to stop or cut things back. But other times I'll go for a run and deal only with the typical fatigue and joint pain, but then post-workout wham! Dizziness and lightheadedness hit hard. I haven't figured out a way of predicting when post-workout POTS will hit and when it won't. I keep all walks/jogs at a vary low intensity level, and there doesn't seem to be a direct correlation to distance. A similar phenomenon is happening at my physical therapy. Any one else with experience or advice?

yeah sometimes you can never tell whether you have overdone it until afterwards. its annoying to guage.

[Lel]

Thanks Racer!

I use Jack Daniel's VDOT system, which is based off of one's VO2 Max. Since getting POTS and autoimmune problems, I've noticed that many days I'm unable to keep up with (or keep up but with symptoms later) my calculated "easy" pace.

Since POTS is connected to heart rate, it might be interesting to see how it goes with a heart rate monitor, as you suggested. It'd also be interesting to compare Daniel's system to heart rate training. I bet someone has already tested this but where to find it...

Unfortunately I'm in a flare-up right now and am just trying to walk a bit. But these are good notes for the future.

[Racer]

Thanks Racer!

I use Jack Daniel's VDOT system, which is based off of one's VO2 Max. Since getting POTS and autoimmune problems, I've noticed that many days I'm unable to keep up with (or keep up but with symptoms later) my calculated "easy" pace.

Since POTS is connected to heart rate, it might be interesting to see how it goes with a heart rate monitor, as you suggested. It'd also be interesting to compare Daniel's system to heart rate training. I bet someone has already tested this but where to find it...

Unfortunately I'm in a flare-up right now and am just trying to walk a bit. But these are good notes for the future.

VO2 Max cant be accurately tested outside of a lab test. Any VO2 max "calculators" are just taking a educated guess based on the average person. Most large hospitals with a sports medicine program do VO2 max testing.

I am not sure about the VDOT calculator, but after looking at it, I believe you are supporsed to use a HR monitor along with the calculator. For intstance, if in my last race, I ran a 5k at 17:43, then it is showing a easy pace of 7:41 with a HR target zone of 65-79% of max. They use the target HR zone that you set on the monitor, since simply running a 7:41 pace wouldnt take into consideration the difficulty of the terain you are running on.

You must take into consideration that the calculator is using averages based on average people, and average max hr (usually based on age) and does not take into consideration your individual needs. The VDOT calculator is a training system, while a heart rate monitor is only a tool that must be used with a training system/program. Because of that, you couldnt compaire the calculator to the monitor, but instead would have to compair it to a HR based program.

Just imagine if you went to the hospital, and besides hooking you up to a HR monitor, they simply calculated you HR based on what the average persons HR was while sitting, then went with a treatment based on that, combined with how well you ran your last 5k!

[Mydoggielovesme2]

Well I finish my Medicare allowable phys therapy visits this wk. When I first started, the therapist had these certain goals she wanted me to reach. It's been quite a learning curve for both of us. I am far from reaching those goals, but I am feeling some better. It's given me a little more energy and stamina. So now I need to try to continue doing something at home, so I don't go backwards. Wish I had a recumbent bike......but no matter, I will keep on exercising. I will get stronger, I will feel better!!

[ramakentesh]

Anyone else feel that in relation to exercise its like one day you can do heaps and the next day a 'switch' has been switched and you cant do much and get bad rebound symptoms?

[issie]

Anyone else feel that in relation to exercise its like one day you can do heaps and the next day a 'switch' has been switched and you cant do much and get bad rebound symptoms?

Oh yes, and the next two days are horrible. My second day after exercise is worse then the day after exercise. At the time of exercise --it doesn't hurt to bad at all and I think I can do more when I stop ----but, do I ever pay for it.

Issie

[Relax86]

Anyone else feel that in relation to exercise its like one day you can do heaps and the next day a 'switch' has been switched and you cant do much and get bad rebound symptoms?

I have days where I amaze myself in exercise and very little rebound issues. Other days where I cut my weights back to just 4# dumbbells and I feel like I can't finish a set. I can't seem to correlate a thing to symptoms, food, fatigue, mental status/stress or menstrual cycle. It's just this mean little game. Furthermore there are some days where I exercise with weights and reps that should give me muscle soreness and it never comes. Other days I have a short, light workout and I'm sore for days. My form is always good. There's a chemistry disconnect with my tissue. Like I said before - I rarely push my treadmill. I'm an amputee with a hip disartic ( which I don't think I even mentioned before here on the forum ) but I limit my impact cardio so I can energy conserve orthopedically for my job in outpatient physical therapy. I completely understand the switch. I used that phrase to describe my symptoms to my husband in my flare of 2009. The 2012 switch seems a little more like a dimmer - never quite turning off.

[Joann]

Ramakentesh and Issie,

I am like that also. I can have a day where I feel like I can just do so much, but if/when I do stuff, I rebound later that night or the next day or so. I will get a huge flare, so now I am really afraid to do things on good days. Recently I had been using light hand weights for about a week, I did a few more exercises with them than normal, and did not feel bad, but the next day started to feel bad and the following morning I had a flare that lasted several days. During the flare, there is no way I could use the hand weights (and they are only 2-3 lbs) just happy if I can get up and walk around the house.

I am looking forward to spring and think I will go back to increasing my walking. Walking seems to be safe for me, maybe if I can increase that I will be able to then add on to it.