“Grinch” Really? "caused By Deconditioning " Really?

[looneymom]

Exercise really does help if you can manage it. My son caught the flu in January. However, as soon as he was well enough, he started back with physical therapy. The amazing thing was that he had not lost any muscle strength in his legs but he lost strength in his shoulder area. He still has trouble raising his arms straight up. He can sit up but starts shaking after he gets to a standing position. The cardiologist, physcial therapist and I have come to the conclusion that this is a POTS symptom and probably has nothing to do with muscle strength. Even with this symptom, my son continues to do exercises so he maintains muscle strength in legs and as much as possible in core. However, he can't do bridges because it makes the shaking much worse. My advice to anyone with POTS is to exercies if possible. Our next step, is to try a new medication to manage this last symptom. He has been off clonsapam for a week but have to wait two more weeks to try a new medication. My son was an active healthy 10 year old boy before this POTS beast came into his life. Deconditioning is not what causes POTS. Hope our medical schools are doing a better job of educationing our future doctors.

[Angela]

yeah, sound similar, when i came down with pots bad I was doing vinyasa/power yoga and the real kicker was after shower, trying to blow dry my hair, hence lifting up my arms. idk, cuz i could somewhat tolerate bridges tho, hands crossed underneath? it was a harder move for me as far as yoga went, but blowdrying my hair much worse go figure! btw, did you mean clonazepam i think? that controlled my total body shaking completely if so. I only take 1mg. if that is what he was on, how many mgs?

[tachyfor50years]

Chaos,

Thank you for the links, appreciate it.

[ramakentesh]

The approach of the community to this article seems to require a difficult balance. Ancedotally, reading all of the stories on here and hearing stories from doctors, I haven't heard of a single person who has gotten better from POTS without significant cardiac exercise. Levine's protocol, which emphasizes the unique exercise requirements of people with POTS, seems to at least be a step in the right direction (at the very least as a guide for exercise to patients and physical therapists).

Yet, it in itself is not a cure. And it certainly has led to a lot of trouble and misunderstanding for those with POTS since it gives outsiders the wrong impression. Overall, I'd say it's a net negative - but at least it reminds all of us to try our best to do more and more activity each day as we can tolerate... I know some of us can't tolerate any at all - and I know the amount we can tolerate can be fleeting - but we must try right? Because at least for me, it seems like no medical cure is coming my way anytime soon - so this is one of the only hopes for improvement I've got - and I need hope... and since cardiac exercise works at least partially for most... it gives me some hope.

i think exercise can be helpful for some - me included. When im not in a relapse I use it to help keep my symptoms under control. It has many effects that may be beneficial - increasing blood volume status, improving skeletal muscle efficacy, perhaps vagal tone, etc -

But I dont agree that all anecdotal reports of improvement from POTS have only come about as a result of cardiac exercise. In fact I can only think of one person on these forums in the last fives year who claimed that. I can however think of a number of patients who experienced profound and sustained improvements from treatment with IVIG. Also some who have done very well on florinef. The facebook POTS pages are littered with stories of people who have improved with IVIG.

In my own experience I first got POTS in 2003 and it went away after 8 months completely with the only exercise being conducted at the time was dog walks around the block. it came back in 2005 and I went insane with exercise - pushing myself hard and through all rebound symptoms. My POTS went away completely after about four months and i was convinced that exercise had cured and treated my POTS.

But despite being the fittest Id ever been and running 5 kms three nights a week, swimming 1 km twice a week, doing weight training twice a week and also playing soccer, one day after a very bad stomach infection POTS just came back again. So at least in my case exercise helps to control symptoms between relapses but it did not protect against further relapse. No surprise I guess when you consider that I developed POTS for the first time WHILE running...

Interestingly the girl with POTS who just ran 50 miles over 12 hours in the heat for Dysautonomia International to raise money for POTS states that she still experiences daily symptoms despite her amazing level of general fitness.

But when there is a poor and incomplete understanding of what causes an illness or group of illnesses in the first place its very hard to say anything much about what cures it.

So I would conclude by saying:

1. Exercise can be helpful for some POTS patients but there is no evidence that it cures POTS.

2. Most of the people I know who have improved greatly from POTS would not agree that it was exercise alone that got them there

3. POTS is a syndrome, not a disease with many potential causes.

4. Disputing the fact that POTS is caused by deconditioning and that exercise cures POTS does not imply that I think exercise does not have an important place in helping POTS.

[looneymom]

Angela, Yes that is the medicine he is being weaned off . This medicine seems to be making him exteremly tired during the day time. He was only on 1mg to begin with. Since he has been off it for a week, he is so much more alert. He is even beginning to smile and laugh again. However, he is still waking up to or three times during the night as before. He was having tremors in his arms and upper body but this has stopped. The doctors are wondering if his body has built up an intolerance to this medicine.

[Angela]

well it is a seizure med at a much a higher dose, but assume you already tested for that. and NO, my pots was not from decondintioning and all my heart tests showed normal, both from regular card year half ago. and ep.

[RichGotsPots]

Exercise that helps us has nothing to do with the heart Or deconditioning. There are a bunch of things that mimic POTS and deconditioning is a totally different "condition" than POTS. Astronauts that are deconditioned get autonomic dysfunction and so do some elderly people in nursing homes. They do rehab and improve quickly. There aren't a bunch of astronauts walking around with POT or else we would get some great PR lol

Meanwhile POTS and autonomic neuropathy are caused by many illnesses. For example Diabetes. Everyone knows that exercise helps Diabetes. Once you treat your cause you will start to get some relief. And almost all debilitating illness are helped with exercise. Next to diet exercise is the biggest predictor of longevity. So yeah it's always good to exercise some what.

But I'm also in the group of ppl who were pushing the limit of exercising when I first became ill and 3 years later when I had my major relapse I was starting to work out hard again. So I have a feeling that there is a very fine maximum line to our exercising that is not the same as other. And BTW I had several echos and I dont have a small heart in any way!

[Angela]

yeah, no my tremors were well before on meds of anysort. I was not dx'd

[tachyfor50years]

I am a post-menopausal woman with extreme presyncope symptoms, Atrial Fibrillation,

severe SVTs, MVP, Hypoglycemia, unstable BP, severe Migraine Headaches, Arthritis in my back,

knee and upper shoulder and bone spur in my feet and disk.

Living in 5,183 ft above sea level.

Exersice? No thank you!