Mytwogirlsrox Posted September 19, 2012 Report Share Posted September 19, 2012 So do you typically get an EDS diagnosis before a POTS dx? Or vice versa? And since it's hypothesized that "loose" vessels causes POTS in EDS does that mean it won't get better or go away? Does mididrone help tighten up these vessels? Quote Link to comment Share on other sites More sharing options...
issie Posted September 19, 2012 Report Share Posted September 19, 2012 I don't know of anyone with EDS and POTS who has gotten over it . . .but, one can hope.You will have different EDS people tell you different things as for the veins. There is a fine line of how much compression I can put on my legs externally - but, I personally - can not use vasoconstriction type things. I have found that I need to vaso-dilate. So, each person is different.Issie Quote Link to comment Share on other sites More sharing options...
brethor9 Posted September 19, 2012 Report Share Posted September 19, 2012 Rox: I was diagnosed with POTS/Dysautonomia long before my new diagnosis....my immunologist explained the 3 syndromes are usually linked together....you can have just POTS but if you have MCAS.....you very likely have EDS of some form too. He told me it is usually life long and a long road to find the right treatment.I agree with Issie...now with my new diagnosis; obviously I wont be cured any time soon so I am just trying to stabalize my symptoms. I also have issues with compression....can only do it for a few hours then have to take it off because I start to ache.Issie; I think I may be opposite of you....I need mostly vasoconstriction.....the cold weather we are having now in Canada is such a blessing (except for the Raynauds now kicking in ......but I also think that certain areas of my body need to vasodilate at different times or I get pain; headaches, leg cramps...does that make sense? Quote Link to comment Share on other sites More sharing options...
roxie Posted September 19, 2012 Report Share Posted September 19, 2012 I had a POTS dx long before EDS, it wasn't until I got to a POTS specialist that EDS was even talked about. He told me that with the right treatment (which takes a lot of trial and error) I should be able to manage but it takes a lot of awareness and consistency.He sees in his patients the midodrine & exercise are the best for EDS patients & loose veins. Quote Link to comment Share on other sites More sharing options...
Kellysavedbygrace Posted September 19, 2012 Report Share Posted September 19, 2012 I have an appt next mo to see Dr, Afrin bc I suspect MCAS. I have wondered if EDS is also involved but I've never had joints go out of place which is what I initially think of w EDS. I recently read a bit about the blood vessel type. So I'm wondering do I have those symptoms?What are the symptoms you all had that made you/ your drs suspect EDS? Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted September 19, 2012 Report Share Posted September 19, 2012 Bren - were you diagnosed with EDS? I missed that somehow. Can I ask what type and what EDS symptoms you have? Quote Link to comment Share on other sites More sharing options...
brethor9 Posted September 19, 2012 Report Share Posted September 19, 2012 Naomi: The immunologist I consulted with last week suspects that it is likely type 3; I have hypermoblie joints in my hands, feet, hips and spine (I am always throwing my back out over the smallest stupid things).........translucent, velvety smooth skin, very elastic skin, easy bruising, scoliosis, problems with anesthetics, gastro issues, joint and muscle pain etc...... and he said POTS or autonomic dysfunction can be the result of MCAS and EDS....so in my case we think the MCAS and EDS is causing the autonomic dysfunction Quote Link to comment Share on other sites More sharing options...
Mytwogirlsrox Posted September 19, 2012 Author Report Share Posted September 19, 2012 Do any of you POtS + EDS people have any valve problems? I wonder if the relationship is because of structural problems in the heart also? Quote Link to comment Share on other sites More sharing options...
issie Posted September 19, 2012 Report Share Posted September 19, 2012 Do any of you POtS + EDS people have any valve problems? I wonder if the relationship is because of structural problems in the heart also?Yeah, there's going to be problems all over your body. I have valve leaks and now diastolic dysfunction. You have to support collagen function - support things that may displace and be too lax (maybe with braces). And mostly do the best you can with what our imperfect bodies handed us. I'm going to try to shorten my muscles to tighten up my ligaments. We are already too limber - so we need to tighten up around the joints - etc. I have issues with veins breaking all the time. So. . what I plan to do is: support vascular, do all the vein strengthening things I can. Other things I think are important are: Figure out if you need to vasodilate or vasoconstrict. Also, I think it is important to know if you need more or less NO (nitric oxide - I need more). Help with circulation to all levels above heart level and try to stimulate circulation in perpherial limbs. Decrease abdominal pooling - and support pooling in extremities. Do whatever you find that gives you relief with tachy, dizziness etc.That's about all we can do. Have a positive attitude and realize that life is not over and there is still a whole lot we can enjoy. There will be good days and bad days. When they are bad - have a cup of tea and put your feet up - when they are good - don't over-do it. This is the approach I've taken. I have discovered some other issues that medicine might can help with and am pursuing them more. But, where there is an EDS issue - that's about the best we can do when the issues are connected to EDS. (Just my opinion and time and science may change what I think about this later.)Issie Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted September 19, 2012 Report Share Posted September 19, 2012 Wow, Bren - I had no idea you had all that going on. Does it give you some peace to have narrowed in on a cause for the POTS symptoms? I think if I found my cause (even if it couldn't be fixed), I'd feel better mentally just knowing why I have all these crazy symptoms. Quote Link to comment Share on other sites More sharing options...
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