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I Really Believe Exercise Is The Most Effective Treatment Currently.


jangle
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" 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." (RichGotsPots post above).

This is one of my greatest heartbreaks. I, too, cannot exercise, try as I will. My first serious cardiac episode happened 15+ hours after I did my then daily rigorous exercise. For the next several years, many of my serious reactions occurred 12-18 hours after "exercising." Why the time delay? I LOVE to exercise, and have been fit and active all my life. Now, exercise is out of the question if I want to avoid serious cardiac events. It's so frustrating. The cardiologist couldn't believe my testimony because I looked so "good" so he ordered and attended my stress test. I lasted less than 40 seconds before he stopped the test. To add insult to injury, you don't get a discount for getting off early :unsure:

Sure wish someone could shed some light on why some of us are so exercise intolerant AND why the cardio-neuro response is delayed several hours - usually occurring during the middle of the night when you least expect it.

CT

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I am exercise intolerant and I to have several hour delay ( when i was able to exercise) I don't understand it I remember before I knew I had Pots and I would try telling my Dr about the delay and he said there was no way it was from the exercise, and anyone else i told thought I was crazy. But it is true and it happens. I have no idea why but I would sure like to know why. Kinda makes you scared to try anything because you don't know what is going to happen later.

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I get the delay too. I wake up the next morning and I feel awful. This used to happen when I traveled too - I made it OK through the trip and then a day or two later I got horrible symptoms: fatique, migranes and tachycardia.. I have improved over time and so it doesn't really hapen after travel anymore, but I still get it after cardio sometimes.

The way that I conquered the exercise is to take baby steps. I did stretching exercises laying on the ground for 5 mins. That didn't trigger anything so I slowly increased over time and gradually worked my way up to doing a recumbent bike. I monitor my HR on the bike and don't go anywhere near my capacity. I wear compression hose and make sure to drink plenty of water, warm up and cool down. I can work full time but I still can't do cardio upright - like the elliptical which I used to do almost every day before I got POTS. I think my body is just not meant to do it and I can live with that.

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Good for you Jangle its good to see testimony to actual results from the excercise treatment.

I have been sick with pots dysauto for going on 4 yrs. Dxed about 8 months ago. From day one my neuro prescribed vigorous excercise along with salt tabs and lots of water. I am also on 3 seperate meds as well. But like he said the meds are only to alleviate some of the symptoms to allow me to be able to excercise. I was unclear until recently just what he meant by vigorous excercise.

I was an avid cyclist before getting sick and even into my early days of the disorder. I was riding up to a couple hundred miles a week on road and trail. To say the least i was in very good condition. I believe this illness deconditions you at an exponetial rate compared to being healthy and stopping excercising.

I did good ealry on after dx with my meds and tried to excercise but we all know how hard it is to do that with this illness and i slacked on the excercise part. AS said i also didnt understand what he wanted with vigorous excercise. From my recent visit with him i now understand. I am suppose to excercise for 30 minutes everyday without fail. While doing so i am expected to get my heart rate to 80%of max(max is 220 minus your age) so for me that is about 160bpm. I have to sustain it there for 30 min. So my actual time will be a bit longer.

For this helps tremendously becaue i need that carrot in front of me to know what to strive for. I need a goal to work towards and the heart rate is it for me. It is very hard to do fighting through the fatigue. For one most of my fatigue settles in my legs. I have alot of troubles walking and with stability. It is also difficult when your on meds to lower your HR so its kinda an oxymoron type thing.

Ive got 4 days in now since my visit. I took a break today because my body said enough is enough. Tomorrow i will hit it again and hope to make it a 5 day stretch. I am doing the recumbent in home if i dont feel like getting outside on my bike. When i do the recumb ill do about 15 min pushing as hard as i can keeping my speed avg to about 20mph. That gets me warmed up but doesnt get the hr up enough so i switch to jumping jacks doing as many as i can taking a short break then jogging in place. I switch back and forth for as close to 30 mins as i can get.

I havent seen any result yet other than extreme fatigue and more difficulty getting around. But he stated this isnt a short journey. It could take a few yrs to normalcy and even then it wouldnt be the end of the road. It is a total lifestyle change. Push through the pain then push some more.

The three main things that everyone seems to be told to do with dysautonomia................Salt salt salt water water water excercise excercise excercise.

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It was probably the most effective treatment for YOU, and it certainly will help others prevent pooling alongside hydration, needed meds, and individualized help such as sleep apnea cpap for others.

The problem is, like MS patients, a lot of people here no matter how young simply dont have the strength to do "strenuous" excercise like jogging. Im on the older end, 52, but I was an athlete all my life before the "SUDDEN" onset. Believe me, theres nothing id like more than to be able to jog, but the complications that can arise from palpitations is scary not to mention potentially dangerous.

Each case to me is different. My base excercise is a consistent movement in a swimming pool or a 1 hour walk at a medium pace when im able. Sometimes I have to bring a bicycle along to lean on, but especially because i always walk uphill in case i run into palpitations or extreme weakness and have to get back to the car/house. This is a MAJOR issue for a lot of us. Imagine jogging 3 miles from the house only to suffer some kind of meltdown and being stuck and unable to move! Or worse, having been to the ER multiple times and having limited insurance!

Theres also the possibility that, as a young person, your pots simply got better with time. Strengthening your body helped, but Im not sure ive read that theres proof that excercise healed you. Either way, its extremely good news that you have your life back.

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Whenever I have tried the elliptical, my HR goes way up. I can only last about 5 min before I start to get a strange dull headache. The headache may last or go away but then come back a few hrs later or the next morning along witht tachycardia, fatigue and nausea. Since other forms of exercise work for me without any recovery time elliptical is not worth it for me.

On the recumbent bike I get the same thing sometimes. It never happens when I am wearing compression hose. So I am pretty sure my body can't maintain enough BP when I exercise upright. If I avoid this I can exercise

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I tolerate exercise pretty well, but it definitely does not help with my symptoms. I have had POTS for twenty years (since I was 9). Throughout those years I have had times of almost-normalcy and all different degrees of flares. In high school and college I was an avid tennis player, and now I do CrossFit. When I have a flare my workouts are certainly affected and I see the difference in what weight I can lift and how many times I faint after certain movements, but I have never noticed my exercise having an effect on my condition.

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Kay1027, I have the same reactions as you. I exercise and probably will continue to, but do not notice that it helps, or that I can do it anywhere near as easily (without the rebound fatigue) that I could 30 years ago.

I always say, the exercise has allowed me to exercise, but has not cured my POTS. My body is malfunctioning and no amount of exercise cures it. But...........there are a few things a bit better. I can exercise vertically and for longer periods of time than I used to. My resting heart rate has decreased somewhat.

I do wonder if I am injuring myself by pushing and doing what I do? Oh well. I don't know.

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Mytwogirlsrox, I am addicted. Have been doing it for almost a year and a half. I go at my own pace, just compete with myself, and I love it. When I experience a flare I adjust as needed and continue on. I had never run more than one mile in my life and within a few months of starting Crossfit I decided to try a 5k and didn't have to stop once. We never run long distances in the workouts, but my endurance had built that much from what we were doing.

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Ok .. I know three of you are hyper. I wonder if there is a difference? The only exercise I can do is recumbent or swimming. Still pay for it a little.

Well I think I have hyperpots.

-panic attacks

-strong urge to constantly be moving

-sweaty palms

-hot flushes

-anxiety

-BP increases

probably some other symptoms I'm currently forgetting.

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I can't remember when I commented on this - but, must have (don't want to go through 10 pages - to find it) since I'm getting notices of comments.

Yes, DX'd with HyperPOTS.

I'm exercise intolerant - can swim some - if I don't use my arms too much. Can do eliptical, but for no more than 15 minutes - I think the longest I worked up to was about 30 minutes - but, then I crashed for a couple days afterwards. I don't do well with walking for very long or very far, too much dizziness and tachy issues. I have periods where my legs, when fatigued - the signals won't tell my feet to pick up and I get stuck. If I don't get stuck, my thigh muscles won't fire and my legs won't pick up. When this happens there is very shaky gait issues, lack of balance. I seem to be able to swing my leg forward from the hip - but the up movement won't work. Part of it is because of POTS and part of it from a really bad ankle/leg break that put me into a wheel chair and not walking for 6 months. So, haven't regained strength from that and still have issues with the breaks and hardware that's holding it all together.

I have lifted weights - but, now am pretty weak in strength and my connective tissue doesn't hold me together very well and I'm constantly dislocating things. I have EDS. But, want to start back in light resistance training - because, I used to enjoy it and I think it would be beneficial - just will have to go low and slow. My husband is good with weight training and says I don't need to elongate the muscle but shorten it. That will help to hold me together better with the EDS. Since I'm already too stretchy and limber - no need to lengthen the muscles. In fact, making sure that I don't go through the full range of motion - is more important.

Issie

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Jangle-- if that's he case then I'm hyper too lol. Have you had your catacholamines tested standing? I haven't, but I have anxiety, hot flashes, sweatiness need to move move move. Sometimes, I feel so uncomfortable in my skin like I could burst out of it ... Weird, it has nothing to do with posture though

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Ha! Just had this eposide happen while sitting quietly watching TV. Just out of the blue - it happens. First comes a sense of anxiety and a panic feel - sometimes a hot flash - and then comes the tachy issues with the heart. You have to get up and move - redirect your attention to something else. I sat down and saw your message and that's what I'm doing to take my mind off the horrible feeling. I do have high NE levels with standing - but, my surges can happen with lying, sitting - just out of the blue. Some think that mast cell issues are the cause of this - I did go use nasalcrom - just then, and took some molasses to calm down the tachy. I would have taken the motherwort - but, I am out.

Issie

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My son was diagnoised with Pots in December of 2011. He has been going to physical therapy and just now able to walk 10 minutes before needing to rest. He also rides a stationary bike in the afternoon for 15 minutes. He is beginning to see some results also. I would agree that exercise has its benefits and to be consistent. He is just now able to exercise everyday. At first, he was only to do it every couple of days and he really didn't understand why it would help him. He has more energy and does not lie down during the day. Since the weather this week has been cooler, he has been able to walk outside and get some sunlight.

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  • 4 months later...

I have been reading all the comments in this thread to motivate myself. I've exercised for the past year, but I've never tried to get my heart rate up. Now I'm trying to do higher intensity exercise and so far I feel good while exercising.

The key for me is to not be miserable while exercising. I just know I won't do it every day (or even most days) if I feel terrible every time I get some exercise.

Cold is my best friend. Now that it is winter here, I've been getting out a lot more. Today I went for a 5+ mile hike and felt great for most of it. I have to walk **really fast** or I feel terrible. I was doing at least a 12-minute mile (5 miles per hour), which is about as fast as I can walk without breaking into a run. That's fast enough to get blood to my brain and keep the lightheadedness at bay.

I'm also thinking I should get myself to the pool. I think water aerobics or even just treading water for a while would do the trick. I feel good when I am in the pool, so I think I would do this consistently.

I just don't think I could push myself enough to run these days. I used to run when I was healthy--I've even done a few half marathons. But I feel horrible after running for even just a few minutes and just don't think I could force myself to do it consistently.

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The problem is, most of us wouldnt list PAIN is our primary issue.

For me, its breathing problems, dizzziness, weakness, shakiness.

Thus, "working my way out of it" isnt really any option.

I do walk nearly every day, but im incapable of pushing myself as if I was kobe bryant.

But all of us should do as much as we possibly can.

For other, that kind of pushing i suspect, can initiate flares.

Many of us suffer from exertion intolerance.

The prescription for people with fibromyalgia, for example, is NOT to push yourself

or you'll wind up flat on your back.

Dr. Thompson in Florida with POTS only sees so many patients because he cant PUSH

himself without initiating meltdowns.

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Spinner I am like you I have always had exercise intolerance, my family are odd ones we can walk ha some years back I could also sprint around, as long as I was on the flat, but should the ground be slightly hilly I am toast! even the smallest of inclines makes me more POTSie, same issue when I carry anything heavy I get really POTSie, my children are the same.

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