humbled_pie Posted March 29, 2012 Report Share Posted March 29, 2012 Though we're not new to Dsyautonomia/POTS symptoms - we are still new (and learning) about the actual disorders, etc.!I'm wondering whether someone can have Orthostatic Intolerance *without* the Tachycardia...?My oldest has so many of the same symptoms as my youngest and I (both diagnosed with POTS)... She's always lacked stamina (though it *could* be just the HEDS). But stand her up and you can see her legs turn red (almost purple) from the pooling. She has instances of dizziness and tunnel vision. She does not have the fatigue to the extent that my youngest does (and I do), but has been tired since the day we brought her home for the hospital, I think. She doesn't have the breathlessness we both get from time to time, but she's always asking if she can sit down and rest when we are out and about for any period of time.She has the same triggers - warm weather (though she'd less heat intolerant than either of us), especially when it's humid, standing (which she avoids at all costs) for any length of time, shopping, etc.And her concentration and memory problems are worse than the youngest's...almost as bad as mine.But when we do a "poor man's tilt table" at home (over the course of the last couple of months), only once or twice has there been a rise above 20 in pulse, and that time it only went up 25...(though I don't think I've ever asked her to stand for a full ten minutes).And she is responding well to increased water/Gatorade - though she's certainly not "cured"!So, is there an Orthostatic Intolerance *without* Tachycardia?Since she's not having overt cardiological symptoms, we can't take her to our cardiologist until she has the HEDS diagnosis (at which point she'll need her echo, etc.) and we can talk more about the symptoms then. (The youngest was having palpitations plus horrendous fatigue plus headaches, so the pediatrician felt we were "spot on" taking her to the cardiologist immediately.) Besides...our cardiologist would rather get me stabilized before treating the girls, because he's hopeful that what works for me will work for them. I agree - I'd rather be the guinea pig, and then we'll at least have a good starting place for their treatment so long as they are both functioning *well enough* for now, which they are - for now.I *know* my oldest doesn't feel well and I *know* she's *never* been "normal"...and I believe her when she has the same symptoms we do (though my husband/her dad still struggles sometimes with thinking she's just trying to get attention --- he's still learning, too). I'm just trying to understand the mechanisms behind it all...Many thanks in advance!~Kari Quote Link to comment Share on other sites More sharing options...
forevertired Posted March 29, 2012 Report Share Posted March 29, 2012 When I did the poor man's tilt table test it did not show I had postural orthostatic tachycardia. It wasn't until I did the regular tilt table test, that it showed I had postural orthostatic tachycardia. In other words I think it is very possible she has POTS, even though it doesn't seem like it from the poor man's tilt table. It is also possible she has a different form of dysautonomia. Either way it sounds like it would be worthwhile to have her do autonomic testing. Quote Link to comment Share on other sites More sharing options...
bellgirl Posted March 29, 2012 Report Share Posted March 29, 2012 Yes, I agree with forevertired, that it is the 60 degree angle tilt table that trigger's the dysautonomia symptoms the most, and you can't determine that at home...I've never heard of orthostatic intolerance without tachycardia. I believe the tachycardia is the way your body compensates for the orthostatic Intolerance. I think you are doing the right thing in getting tested and treated first, like getting your O2 in a plane in an emergency before putting on your children's masks. You have to be more balanced and well physically in order to take care of them, and since you are related, they would probably present with the same form of the disorder, too, so it may eliminate testing that isn't necessary for them, possibly. I can relate to your daughter's dizziness; that was my main symptom before diagnosis. I'm not good standing in line or for long periods either. I have to make short trips out, as well. I always know when I've had enough...I'm usually only 5 minutes from home! If I'm feeling bad, I don't go out at all; I rest It's an art and a science! Quote Link to comment Share on other sites More sharing options...
mully2014 Posted March 29, 2012 Report Share Posted March 29, 2012 Check out Neurocardiogenic Syncope...it is closely related to POTS but doesn't have the HR issues more BP stuff. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted March 30, 2012 Report Share Posted March 30, 2012 Sorry to hear both your daughters are affected. I agree with the others - get some official testing done. I find it so interesting (and disturbing) that this can run in families. What does that mean about this disorder -- genetics, environment, some wicked contagious virus? Wish we understood more about this condition. Quote Link to comment Share on other sites More sharing options...
humbled_pie Posted March 30, 2012 Author Report Share Posted March 30, 2012 Thanks for the info!I just found a link which describes 5 different types of abnormalities in orthostatic intolerance - POTS is just one type - and how the different types are determined. The link is HERE in case anyone is interested.None of the others describe my daughter either...but I am realizing I've not checked her out in the morning, either, and I suspect her numbers would look a lot different then given how much she's *not* a morning person.Thanks again! Quote Link to comment Share on other sites More sharing options...
humbled_pie Posted March 30, 2012 Author Report Share Posted March 30, 2012 In our case, the Dysautonomia is secondary to Hypermobile Ehlers-Danlos Syndrome, which is genetic. It's all related to our faulty collagen. They got the HEDS from me - and depending on which expert you listen to, anywhere between 30 to 70% of people with HEDS will develop Dysautonomia/POTS in their lifetime. The other issue therein is that while most youth who develop it in adolescence an look forward to a "recovery" when they reach adulthood, for those with EDS, once it develops, it's generally lifelong. Quote Link to comment Share on other sites More sharing options...
issie Posted March 30, 2012 Report Share Posted March 30, 2012 In our case, the Dysautonomia is secondary to Hypermobile Ehlers-Danlos Syndrome, which is genetic. It's all related to our faulty collagen. They got the HEDS from me - and depending on which expert you listen to, anywhere between 30 to 70% of people with HEDS will develop Dysautonomia/POTS in their lifetime. The other issue therein is that while most youth who develop it in adolescence an look forward to a "recovery" when they reach adulthood, for those with EDS, once it develops, it's generally lifelong.I'm one of those with EDS also and I've had POTS since I was very young. It really complicates the treatment too. I have yet to find something completely successful. There are things that help - but, it's always with me. And, I do honestly believe it is lifelong. I'm glad you're going to get your children help at a young age - because, all my life I knew something was wrong and only got it figured out much later in life. It might prevent some of the things that EDS brings - if they are aware of that early too. Issie Quote Link to comment Share on other sites More sharing options...
Lemons2lemonade Posted March 30, 2012 Report Share Posted March 30, 2012 My tachycardia has gone away with exercise and medication but I still get light headed Quote Link to comment Share on other sites More sharing options...
issie Posted March 30, 2012 Report Share Posted March 30, 2012 My tachycardia has gone away with exercise and medication but I still get light headedHappy for you lemons - it's great that you don't have EDS and have to have it for a life time. Maybe, some day you won't have it at all - since it was an all of a sudden thing for you. I haven't heard of any EDSers having gotten over it - if they get it. Has anyone?Issie Quote Link to comment Share on other sites More sharing options...
targs66 Posted March 30, 2012 Report Share Posted March 30, 2012 I was diagnosed with neurally mediated hypotension at Johns Hopkins almost 2 years ago. It seems to be what you are describing: orthostatic intolerance without the tachycardia. I get very dizzy and tired when i'm upright (that includes sitting down) but I don't have the typical POTS reaction (i.e., high heart rate tryng to compensate for low BP). Before going to Hopkins, I had a TTT where they said the results were "normal" - although my BP was very low, my heart rate didn't increase abnormally. During my TTT at Hopkins, the same thing happened but they then introduced (via IV) some kind of synthetic adrenaline - and my HR and BP plummeted. Apparently, this is neurally mediated hypotension.Sorry, I'm not very clear today - hope this helps! Quote Link to comment Share on other sites More sharing options...
anna Posted March 30, 2012 Report Share Posted March 30, 2012 My children have all the POTS symptoms some times they have the tachycardia sometimes they do not, their cardiologist and Dr. with a POTS interest, said they feel this is just the way POTS has presented in them. Quote Link to comment Share on other sites More sharing options...
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