Guest guest Posted February 16, 2004 Report Share Posted February 16, 2004 Hi, Yea, I'm the one with the appt with Dr Byers. Me and my 2 daughters are seeing him tomorrow. I'm a bit nervous. Don't know if I have all the info he is gonna need. But, oh well. I have heard about that tilt-table test. I'd hate for to have another iv. They can hardly find a vein anymore on her. They are so tiny in her arms. She's had so many over the last year. I'm afraid they are soon gonna have to go in her neck. I'm gonna ask dr Byres about all this. And, I see my gp on thurs, so I will ask her about the heart monitor. is going to start seeing my gp next week. She is getting a physical so she can get her cystogram on her kidneys. I will make sure to get her heart checked out. I suppose she will send us to a cardiologist. Ugghh! Another dr! oh well. We have to do it. I keep thinking we may be ticking time bombs here. Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2004 Report Share Posted February 16, 2004 > This is in response to you and your daughter having a high heart rate, > feeling dizzy, etc. The heart monitor you described is called a Holter > Monitor. It is worn outside the body (hanging around your neck, in a > pouch), and attached to patches/wires on your chest. It is non-invasive > (which is good), but often doesn't catch the episodes you are having. This is exactly what I had when I lived in Arizona. Because I had to wear the monitor, I couldn't actually participate in my regular dance class. Just having the monitor on modified some of my behavior enough that I didn't faint once in the time I wore it. Every time I stood up, I had to check to make sure all my wires were clear and hadn't snagged anything. Taking that amount of time to go from resting to standing prevented me from fainting. Interestingly enough, they did think that they found a siginificant cardiac event. Unfortunately, the elevated heart rate corresponded to the time I spent in front of my classmates attempting to sing a song from Les Miserables for my voice class. I was so nervous, I could barely get the words out, and definitely not on key or with enthusiasm. My heart rate shot up for the entire duration of the song, which seemed an eternity. > Not exactly a " true " POTS, NCS, etc., but actually secondary to > our veins, etc. being too " stretchy " to dilate and constrict efficiently > enough to pump the blood back to and from our hearts/brains in a > timely manner. This is what is believed to be the problem in my case. I started drinking coffee several years ago to raise my bp. I drank about 4 cups every morning, and then followed a strict no-caffeine diet the rest of the day. That worked very well for me. If I missed my coffee though, I would have fainting for several days. Since having my thyroid treated, my bp has gone up and I don't faint nearly as often, even without any caffeine. To read about the link between EDS and POTS and CFS, click this link to view the Fall-Winter issue of EDS Today. http://www.edstoday.org/newsletter/FW2000.htm -Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2004 Report Share Posted February 16, 2004 , My prayers and thoughts are with you all today! Hugs, Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2008 Report Share Posted November 27, 2008 I forgot to tell you, the NAC went out 2 days ago.. Don't eat too much. MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Quote Link to comment Share on other sites More sharing options...
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