I Really Believe Exercise Is The Most Effective Treatment Currently.

[AllAboutPeace]

I don't know about Dr. Levine's program but my husband was telling me about something he recently read and it basically said the same thing. He said that the study said that you could do exercise in short burst - but, more often and it was the continuing of it that was important. So, my 5 minutes 6 times a day goal - is a good one. That will give me a total 30 minutes for the day. But, if I can only get 5 minutes at a time - that's better then no minutes. If you can only get 2 minutes or even 1 minute - that's better then no minutes. And then add in more segments. I'm not there yet - but, working on it.

Issie

This is exactly what has been working for me. {Thank you, Banana's, for advising me on this a few months ago }. I've been doing the short bursts for the past 5 weeks consistently. I started at 2 mins, 3X day and now I'm up to 4 mins, 5X day on the recumbant bike. I don't push my heart at all because it pushes back and I get very dizzy when I doing any kind of cardio. I did not expect to see any benefit from this limited amount of "exercise", my goal was to simply boost circulation. I have noticed some small but nice improvements (before this I had zero improvement in 6 mos)

* more stamina (by that I mean that I don't have to lay my head down as much; I can do more without resting)

* days that I'm not thirsty - I'm finding that some I need to choke down the extra water 2 1/2 liters was no problem before.

* My big veins in my arms are starting to plump up again. I just had bloodwork and they had no problem getting blood. Previously those veins looked flat and blood would stop coming out.

* brain fog seems to be improved

* nightime crazy heart rhythms are less frequent.

My heartrate and bp numbers are still the same, although my hr doesn't seem to jump up as quickly. The blood pooling is still really bad.

I had tried all kinds of different routines, but so far this frequent/short bursts is the only one that I've been able to do. I agree that even a little bit can make a difference if it's all you can do

[Birdlady]

I did my 2 minutes of exercise today reaching a HR of 125. I'll do another 2 minutes in a few hours and see how this goes. My heart rate was 145 walking back upstairs after exercising...lol

[issie]

I did my 2 minutes of exercise today reaching a HR of 125. I'll do another 2 minutes in a few hours and see how this goes. My heart rate was 145 walking back upstairs after exercising...lol

You go girl. (You do know that stairs gets all of us. )

Issie

[Ashelton80]

Yep, I just got finished with my trainer and I was more out of breath climbing my stairs to come rest than during the entire 20-30 minute workout. My workouts are mostly on my back or on my hands and knees so it's not too bad. I can already tell it's getting easier. I've been back at the bike and work outs for 3 weeks now.

[corina]

After a great outing yesterday I had severe blood pooling today, low hr and lots of dizzyness. As I couldn't go swimming at rehab (to dangerous to drive and swim) because of that, I decided to try 5 minutes on my exercise bike and repeat that during the afternoon. I think the pooling is less now and I feel very proud of myself for trying! Thanks Issie for bringing the short bursts up, I wouldn't have thought of that myself!

[Troy]

After a great outing yesterday I had severe blood pooling today, low hr and lots of dizzyness. As I couldn't go swimming at rehab (to dangerous to drive and swim) because of that, I decided to try 5 minutes on my exercise bike and repeat that during the afternoon. I think the pooling is less now and I feel very proud of myself for trying! Thanks Issie for bringing the short bursts up, I wouldn't have thought of that myself!

Glad to hear you weren't so easily deterred by your symptoms and still found the strength to work through it.

Routine is the keyword here and that is the source of the treatment, and sticking to the excercise routine is very important. About 5 years ago I actually made a topic on the benefits of excercise on POTS, it was a theory I discovered from personal experience. I was going to bump that topic to show everyone that I had also made the same mutual discovery on excercise and POTS but none of my past topics from 5 years ago seem to be avaliable on these forums, did they clear our past posts?

Anyways the point I wanted to make was that POTS had really debilitated me and I had llost my ability to sweat...until one day I went overseas for a holiday. I went for walks everyday along the sea shore at the holiday resort we were staying at, at first the it was only short walks but eventually I began to be more active with each passing day and taking longer walks. I kept this routine up everyday for 2 months and then suddenly one morning during the walk I realized I had begun to sweat. I was so excited beyond words....

It was the first sweating I had done in 12 years and furthermore I was no longer feeling overheated and i could stay outside in the sun. Miracelously walking and excercising everyday had allowed my body to begin functioning like normal. The main point I want to make to everyone is that it took 2 and a half months of excercising EVERYDAY before I got results and saw imnprovement, so it does not happen right away and improvements do not happen if you get lazy and miss out on the routine, you have to stick with it everyday and condition your body into working in a normal way.

Sadly though I got too carried away from the improvements and pushed myself too far by playing soccer and football again which resulted in an ankle injury and put me out of action for several months, soon after I reverted back to my old lazy habbits and once again all my pots symptoms came back, including the overheating and lack of sweat. So now i at least know the potential for improvement is there if I go back into the excercise routine but the trick is to not overdo it and to stick with it everyday.

[issie]

Endure, I really appreciated your post. It makes me more determined to do what I can do - every single day - despite how I might feel. I'm slowly improving - however so slightly - but, even 1/2 a step forward is better then backwards.

Issie

[sue1234]

I've been doing short-burst walking out my front door for the last few years. For some reason I could not build up to longer, so I figured a couple of minutes here and there has got to be better than none! Now, I've been doing the short-burst routine on my recumbent bike for about 4 weeks now. I do it for 0.25 miles about 6 times a day. At first, I got out of breath and that was my limiting factor. The breathing got easier. Now, my thigh muscles turn to jello and burn at that same 0.25 miles. They feel like they ran a marathon!! That part does not get better, and I'm not sure why. I'm taking in adequate protein

The recent cardio I had a consult with(literally, about a short, 15-minute consult!), agreed that I was probably not de-conditioned when I started with POTS, but said through the years, I had become de-conditioned. I agreed. He said it is imperative to build up the lower leg muscles again and showed me some ways to exercise them. He said to not be impatient, to give it about 6 months, and he said I should begin to notice a difference. He even said, "I bet you have difficulty exercising standing up", and of course, I told him yes. He said that with the way my hyperPOTS overreacts to being upright, it's just impossible to get enough done upright as far as exercising. He said go slow and build those leg muscles up, and give it plenty of time. Then, I'll begin to make progress after that. So, I am definitely going slow and not rushing results. I have to admit I felt more "energized", but still did not physical do anything more than my usual daily activities.

Endure, that is interesting that you began to sweat again after your exercise build-up. I don't sweat anymore either, and it is awful to not sweat with the summer heat.

It makes me wonder, why does exercise work? I mean, above and beyond becoming "fit", what is exercise correcting in our body that just a week or so of not doing it puts people back to square one?

[POTLUCK]

I am continueing to exercise via running and walking, and have cut my Propranolol from 80mg LA twice daily to 60mg LA twice daily without increasing HR or Lying to Standing difference overall.

I am doing about 6 miles per week running ( ~3 times per week ) and trying to increase about 1/2 mile per WEEK. ( It seems I should be able to increase faster but I get fatigue, and soreness later, which I do not understand. ) I started with fast walking mid April , and increased to Run/Walk in May.

It seems to be helping me, as I am definately doing better.

[Foggy01]

For those of you who have significant "brain fog"/"mental fog"/"mental clouding"/etc. has this intensive exercise helped it? If so how bad was it before and how bad now? Thanks.

[McBlonde]

After this topic was first discussed in March, I started with 2 laps around my living/dining room.....gradually working my way up to as of today, 29 minutes walking outside briskly. Unfortunately, the only thing that has improved is the length of time I can walk.... The other pots symptoms are still the same.

[blueskies]

After this topic was first discussed in March, I started with 2 laps around my living/dining room.....gradually working my way up to as of today, 29 minutes walking outside briskly. Unfortunately, the only thing that has improved is the length of time I can walk.... The other pots symptoms are still the same.

This is sort of how I am. Except I do start to get sick if I walk long enough. The muscles strength (motstly in my legs and buttocks) I gain from walking does not bleed over into improving standing or sitting with my legs down. I get very potsy then. I get potsy when I walk too long too. If I keep on pushing I will eventually walk myself into migraine breakthrough.

I had a laminenctomy last year in May and have had a painful back since. I've tried physio but it made my back worse. I want to get back to pilates -- all mat work -- so have had a CAT scan yesterday. If there is nothing wrong there that I could make worse by doing pilates (I should find out early this week if back is okay) I'm going back to the pilates which I was doing before my a disc slipped and I needed the laminectomy. I felt better about myself when doing pilates (calmer) and I didn't bring on migraine and shakiness like I do when I walk too long. And I never know when I do walk too long until I do it and feel the nasty effects! I just can't predict it. Times vary. I can think I've had a good walk and feel great when I get home but then get a migraine a few hours later or feel really exhausted, etc. I haven't done any exercise for 2 months and although, for me, exercise doesn't do much for my symptoms it does make me feel a little bit better aobut myself. As long as it's the right type of exercise.

blue

[anaphylaxing]

Things have finally settled enough for me to be able to walk, hike and bike. I am SOOo ecstatic! Tried a few steps of jogging, but going to build more up on these and see how it goes first. Might get back to jogging yet! Fingers crossed.

It's been a slog of days/months where I could barely get out of bed or walk. With minute progress along the way, but we can never give up who knows what great things are ahead!

[futurehope]

Ana,

I bet you will be able to jog again! Never give up until you are six feet under.

[RichGotsPots]

I'm going to have to respectfully disagree. I think there is a decent percentage of people where exercise will be their most effective treatment, and it looks that mayo is using it effectively for kids, but then I think the majority of people it's only important for them not to become deconditioned and it will only help on that level. Then those who push it a little to far it will activate their sympothetic release maybe my endorphins and it will trigger a flare..

The question is how do we know who it will help. I know for me it's a completely impossibility because when I exercise or even walk fast I get too hot, will sweat, my HR goes sky high and then I can breath..

So I would say keep up the good work but try to do everything in moderation and don't push it Olympic levels

[futurehope]

Rich,

I was talking to Anaphylaxing only. I know her from another forum.

[green]

I have been "accepted" into Dr. Levine's exercise program, but I haven't gotten the information from them after 4+ weeks of waiting.

I am not sure I'm going to adopt their program - I've been pursuing my own system during the month I've been waiting: 140+ BPM for 30-40 minutes 3 times a week, and 6 resistance workouts per week (2 legs, 2 upper/lower back, 2 chest/arms). If they ever get around to sending me their BPM recommendations, I may adopt those, but I don't know that I'm obliged to follow through with the study - they've left me hanging for quite awhile.

[futurehope]

Green,

Something has gotten lost in the cracks for you with Dr. Levine's program. Email them. They respond rapidly. Or call.

[anaphylaxing]

Thanks for the encouragement futurehope!

[RichGotsPots]

Future I was talking to Jangles, it's his post ;-)

[ramakentesh]

Ive run 5 kms three times a week, 100 pushos and situps three times a week, various exercise programs and I think they may help. ANd they certianly didnt kill me.

[futurehope]

Way to go, Rama!

[futurehope]

My opinion after 4 months of exercising, the first three months being Dr. Levine's exercise study, it is not easy. As a matter of fact, it is difficult. I've had to overcome way more since being diagnosed with POTS in trying to exercise than before POTS.

There were days I did not feel like I was going to make it. There were days that I felt worse afterwards, especially after the interval running days. But, I refused to stop. If I had stopped every time I felt bad or worse, I would be in the same position I had been in before doing anything.

There is no doubt in my mind that I still have a malfunction going on in my body. It is more difficult for me than for a normal person to live my life. I have POTS, MCAS and assorted other ailments probably all tied together.

I know what happened to me when I first got symptoms of POTS. I freaked out. I had no comprehension what was happening. I stopped moving all together out of fear of passing out or of being dizzy.

Fast forward many years, many doctors visits, including an okay from a cardiologist......I decided to do Dr. Levine's exercise program.

I do not recommend exercise for anyone. This is a personal decision involving your state of health and your doctor.

I am not cured. I am helping my body re-adjust to its deficiencies. If I let up, I slide back more quickly.

I am motivated by challenge. I am not done living yet. I am determined to do the best I can with what I have.

Don't exercise if you cannot or do not want to.

All I can say is, it does wonders for your mental and physical well-being. Instead of sitting around, I've chosen to do this. I may crash tomorrow. I may pass out. I may die. But I will not give up living and striving until it's over, until I'm six feet under. Until then, I try, I fail, I push, I live. That has been my choice. It may not be yours and that's okay.

Just to let you know, the improvement does not happen all at once. It is gradual, slower than normal. But, the improvements are there. I will not go back to the way I used to be if I can help it. I will keep on keepin' on.

[arizona girl]

That was beautifully said futurehope! Dr.Grubb prescribed exercise for 20 min 3 x a week for me. The main reason being that strengthing the muscle pumps in the body is a back up system to get blood to the brain. Keeping the muscles strong provides some added assistance. I think that is why when I was younger I was able to function better then today. I had always been in gymnastics or dance. However knees up exercise like in aerobics or stepping uphill would trigger those dramatic episodes where I would collapse.

I have not been able to accomplish an exercise program in recent year there were a few attempts with PT's who didn't understand what I had and caused muscle spasm and flare ups, so I gave up.

How ever my neuro said lets try again and sent me to his to his PT that specializes in neuro diseases. I had my evaluation this week and low and behold I was weak exactly where I thought in the top mid part of my thighs and the same location in my upper arms. I was very strong though in my other muscles groups. So the muscles you use to climb stairs and stir a pot or clean the windows.

Because of the orthostatic issues he is sending me to pool therapy with specific exercises to strengthen me where I am weak. I will mention Levine's program next time I see him. I'll let you know how it goes and what the exercises are once I find out.

I'm not ready to give into this yet either. I may be 55 now, but I still feel like a girl in many ways and long for my dancing days.

[futurehope]

Arizona girl,

I definitely have to be careful of my knees. There is something going on and it has to do with age, so there are certain things I won't do.

I've also noticed that my thigh muscles are weaker than I thought they should be, even after trying to strengthen them. I have no idea why. My leg muscles tire more easily than when I was younger. Same for my biceps.

Anyhow, I'm glad your doctor has okayed you to give it another go. Let us know what happens.