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Orthostatic Intolerance Without Postural Tachycardia: How Much Dysautonomia? Article


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The article states, "We recently reported that deconditioning is almost universal in both patient groups"

I would like for them to define how THEY define and determine deconditioning.

Sorry folks....but I'm so tired of hearing people try to blame patients for this because they are 'deconditioned'. I agree that regaining or maintaining a conditioned status can help improve symptoms if/where possible however, there are a LOT of people who were in great shape when they first got sick.

In my own situation I was out in the heat, in marching band 4 hours a day in the summer and multiple hours a week in other seasons and felt like crap but I persevered (and was able to), I was in gymnastics, a runner and an active, on-the-go teenager when all of this was becoming worse. I have been fatigued and tired since the day I was born and I've always needed tons of sleep, I've had a very high heart rate my entire life but I was NEVER "deconditioned" until well after I was diagnosed and the syndrome kept escalating and invading other organ systems.

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Poohbear,

I totally agree. I was training for a fitness competition...I was in the best shape that I had ever been in. I had Doctors tell me that I was using excersise as a anxiety reliever and since I wasn't excersising I was just having anxiety. It was really frustrating.

I have always had a high heart rate too. I was always jealous of people that were in the 50's and 60's, and wondered why I wasn't there because I did work out a lot.

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Thanks for posting, Alex.

My worst flare-up happened after completing a half marathon. I'm in better shape than most of the doctors I've visited (seriously) and yet they don't have POTS. It's so disheartening to keep hearing this deconditioning accusation.

Notice also the last paragraph says our dysautonomia is "mild!" And yet we have people so sick they are unable to work or even leave the house.

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I originally had POTS, which progressed to orthostatic hypotension.

The cause of my problems is autoimmune. I have been one of the lucky ones, whose antibody has been discovered. I do not have any genetic diseases or syndromes, that I know of.

I have heard of people with EDS who have AAG or autoimmune small fiber neuropathy. I have also heard of people with mitochondrial disease who have various autoimmune neuropathies. Immunofluoresence is used to identify autoimmunity with small fiber neuropathy, and also autoimmunity in general within tissues. However immunofluoresence does not identify the antibodies involved.

Keep in mind that even if you have a genetic disease, autoimmune diseases are still a possibility. Autoimmunity is a possibility for a lot of people.

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Every time I read about deconditioning causing POTS I want to yell, "then why aren't 90% of the American population being diagnosed with POTS?" I was in great shape when I got sick. Would LOVE to be able to return to that level but every time I try I get worse! UGH!! When I see how many people ARE deconditioned and don't have what I have it makes me crazy to hear docs keep trying to blame this tired old excuse!

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That's true Chaos, but the only problem is that there have been imaging studies suggesting smaller, "grinch" hearts.

In some ways, proving you work hard is the best way to stop this problem. Either through physical therapy or cardiovascular rehabilitation. Supervised and monitored exercise is key as you have to show up and put in the effort according to what professionals think is necessary. They record what you do, so outcome and efforts are measured by them. Therefore, you cannot be blamed.

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Alex, I too have noticed the last few articles seem to be biased toward anxiety and deconditioning. I have seen a big shift over the past few years in Mayo, Rochester--combination of factors but disappointing none-the-less.

I will be anxious to read the full article. Re-reading the abstract helped me some....In the end I think they are still saying that there is more unknown than known in these illnesses. They also point that there were few differences between severely deconditioned patients and non-deconditioned patients so that kinda 'un-does' the earlier statement in the abstract.

Chaos, I hear ya....True, there are many people that are deconditioned, but they don't have the excessive heart rate and/or drops in blood pressure to make them get to a Dr. That's the crazy thing....why don't these researchers see that? That there are MANY people in society who are deconditioned but they aren't SICK with rapid heart rates and passing out.

I had a Dr. at one of these top places ask me at a follow up appt. years later why I wasn't better. I was told, "Most of our patients improve in 5 years why haven't you?"--All said with a blaming, accusatory tone.

There are some great Dr's out there but there are also some who aren't so great because their ego's get in their way and many people don't realize the politics, red tape and bias that some research (and subsequent papers) have going in to them from the beginning.

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Reconditioned my bumm. I chase my 5 kids and run a home daycare. When I saw the specialist he asked about exercise, I told him that I do yoga and plates when at the end of the day I can just screen myself off the floor. He actually said to be....."No, real excercises".....lol

I asked him what he did to be conditioned, that was the end of the appointment!

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That's true Chaos, but the only problem is that there have been imaging studies suggesting smaller, "grinch" hearts.

In some ways, proving you work hard is the best way to stop this problem. Either through physical therapy or cardiovascular rehabilitation. Supervised and monitored exercise is key as you have to show up and put in the effort according to what professionals think is necessary. They record what you do, so outcome and efforts are measured by them. Therefore, you cannot be blamed.

Believe me, I've been trying to exercise my way out of this for the past 4 years, including doing a supervised cardiac rehab program. As a PT, I was worried about deconditioning from the very first day I became ill, so I've done everything in my power to NOT become deconditioned. I've built up to the levels of exercise my POTS docs insist upon only to crash again and again and even while exercising, I still have a ton of symptoms- which is what these researchers with their "grinch heart" theories never address. (They always seem to exclude those people from their studies I've noticed.)

Doing the Steven's Protocol 2 day CardioPulmonary Exercise Stress Test showed me why it's not just deconditioning. I'm trying a new method of exercise now and we'll see how that goes. I've done 4 years of the other way and have just gotten progressively worse so it's time to try something new, despite what "those" researchers want to say.

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I think OI is what they call it when you don't quite meet the 30 bpm increase. One dr. at Mayo said I had POTS another said I had OI, (didn't quite meet POTS). My TTT at Mayo was much better than the one at Baylor where I failed it miserably and got dx'ed with POTS.

When I saw the cardiologist there he noted that I had normal sized left ventricle contrary to the "grinch" syndrome theory. They stopped my exercise test early (I wasn't finished running yet), but showed only "mild" deconditioning as measured by VO2 max. However, from a physiological point of view, if your HR is beating too fast (200+), it's not going to be pumping blood efficiently, this will itself cause the reduction in exercise capacity. So I think it's an error to think the deconditioning is entirely causing the OI when in actuality it could be the OI causing the deconditioning.

Nonetheless, controlled studies have shown that endurance exercise in normal people as well as in OI can dramatically lower standing HR values, and that roughly half of patients with OI will respond to aggressive reconditioning exercises. In this view it makes sense to follow an exercise program as tolerated.

It does not however make sense to think that exercise is the only thing one needs. For some it is, but for others, autoimmune/norepinephrine/EDS/mitochondrial/hypovolemia/mast cell issues need to be evaluated.

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I too was in excellent shape before succumbing to dysautonomia/POTS..... in fact I was an exercise nut! 2 hrs of intense cardio and weight training every night. My stomach was so toned (200 crunches every night) that my Dr once mistook one of my muscles for a tumor lol...... that's why I get soooooo angry when crap articles keep coming out saying in a nice way we are lazy. I agree that if that's the case why doesn't more of the general population have this then??? arrggggh..... in my case I kept digging and finally was diagnosed with mast cell and just recently through biopsy....surprise!! EDS..... so in my case the dysautonmia/POTS is actually being caused by the EDS/mast cell issues because both disorders weaken blood vessels and effect the nervous systems. I think the ones who really need to stop being lazy are the researchers/doctors who keep chalking this disorder up to being either all in our heads or deconditioning ;)

Bren

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Wow Bren,

I know you've been looking for answers for quite some time now.

Hopefully with these new pieces of the puzzle you'll be able to figure out the best treatment course for you.

And yes, the deconditioning and anxiety tunes are getting old...fast.

Alex

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Thanks Alex :)

Yes it is nice having more pieces to the puzzle and definitive diagnoses; but to be honest even with the additional meds I am still struggling on a daily basis. I am starting to think once you hit a certain age no matter what the illness, you have little chance to getting back to your baseline before onset :( its all about adaptation at this point..... and I look forward to the day when someone invents time travel lol ;)

Hugs

Bren

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