cvincent Posted December 17, 2008 Report Share Posted December 17, 2008 Hey everyone, My doctor recently told me that he is probably going to send me to the Cleveland Clinic. I know a lot of people have been treated there. I guess I'm just wondering about your expiriences. Im not really sure at this point about going. Ive had POTS for 4 years now and know what a lot of the treatment options are and I also know that there isnt a cure. Im just worried that if I go down there with the hope that they can help me feel better they might just tell me that there isnt anything that they can do that I havent already tried. I just dont want to get my hopes up and then be let down again. Thanks for any input.Candace Quote Link to comment Share on other sites More sharing options...
mkoven Posted December 17, 2008 Report Share Posted December 17, 2008 I'd do a search on cleveland clinic. A lot of folks have been. I believe the consensus is that they are really good with diagnostics and less good for followup. I had a mixed experience. But the tweaking of my treatment has helped me quite a bit, though it seemed like minor tweaking at the time. I'm debating whether to make a followup trip, but don't know if I will get new ideas. Quote Link to comment Share on other sites More sharing options...
Ernie Posted December 17, 2008 Report Share Posted December 17, 2008 Hi,I would go because I would like to have access to more tests to have a better idea of what is going wrong with my body. Quote Link to comment Share on other sites More sharing options...
mkoven Posted December 17, 2008 Report Share Posted December 17, 2008 The tests they did on me were a tilt table, which showed pots and oh, even when on meds. they then did more testing to determine if the cause is neurological or vascualr. they did hemodynamic testing, to show where my blood pools when I change positions. They would have tested for blood volume, but I'm allergic to their contrast agent. they then checked autonomic reflexes--valsalva, sweat, hr variability. The upshot is that my reflexes are intact, but I pool too much because of poorly constricting veins. I also have a "hyperkinetic" heart. The new recommendations involved increased florinef to increase blood volume, cardiac rehab, and an abdominal binder after I eat. No explanation of my nocturnal chest pain, and no real interest in helping me figure out what that was about, which is disappointing. They were not as good about communicating betweeen departments as I might have liked. Quote Link to comment Share on other sites More sharing options...
Radha Posted December 20, 2008 Report Share Posted December 20, 2008 could you please explain what an abdominal binder is and where i can get it? thanksRadha Quote Link to comment Share on other sites More sharing options...
mkoven Posted December 20, 2008 Report Share Posted December 20, 2008 You can go on amazon and type it in--some wear it for back support. Picture a corset with velcro. Quote Link to comment Share on other sites More sharing options...
firewatcher Posted December 20, 2008 Report Share Posted December 20, 2008 Radha,Most medical supply stores and some pharmacies will have them, they are bands of strong elastic with a big velcro closure. I wear mine low and as tight as I can get it. It really helps. I also find that I need to wear a long, light shirt under the binder or the velcro that doesn't stick will scratch. Quote Link to comment Share on other sites More sharing options...
Radha Posted December 21, 2008 Report Share Posted December 21, 2008 how long do you wear the binder? how long after you are done eating? and how did it make a difference? thanks for your inputRadha Quote Link to comment Share on other sites More sharing options...
mkoven Posted December 21, 2008 Report Share Posted December 21, 2008 I just wear it when I'm having a rough time. It keeps the blood from pooling in your abdomen-- not only legs. Quote Link to comment Share on other sites More sharing options...
Radha Posted December 22, 2008 Report Share Posted December 22, 2008 could you please tell me which brand you bought and how tight it should be, how long do you wear it? i dont know what size to buy, sorry for so many questions! Radha Quote Link to comment Share on other sites More sharing options...
MelissaCrystal Posted December 22, 2008 Report Share Posted December 22, 2008 The tests they did on me were a tilt table, which showed pots and oh, even when on meds. they then did more testing to determine if the cause is neurological or vascualr. they did hemodynamic testing, to show where my blood pools when I change positions. They would have tested for blood volume, but I'm allergic to their contrast agent. they then checked autonomic reflexes--valsalva, sweat, hr variability. The upshot is that my reflexes are intact, but I pool too much because of poorly constricting veins. I also have a "hyperkinetic" heart. The new recommendations involved increased florinef to increase blood volume, cardiac rehab, and an abdominal binder after I eat. No explanation of my nocturnal chest pain, and no real interest in helping me figure out what that was about, which is disappointing. They were not as good about communicating betweeen departments as I might have liked.Where any of these tests really scary? Like did you suffer having to undergo most of that testing? My TTT was excruciating and I'd hate to ever have to do it again. I thought I was dying with my BP dropping below 40/20. I'm hoping the other testing isn't as traumatic. Took a week to recover from the one of my worst POTS episodes afterwards, too. Quote Link to comment Share on other sites More sharing options...
mkoven Posted December 22, 2008 Report Share Posted December 22, 2008 Melissa, I read your description of your ttt right before I had mine and was freaked! they were very humane at CC--told me I could stop the test at any point, and they were not trying to bring me to the brink-- just noting a trend. It wasn't that bad. the other testing wasn't that bad-- but we all react differently. Quote Link to comment Share on other sites More sharing options...
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