Guest brianala Posted February 9, 2009 Report Share Posted February 9, 2009 I'm new here so I just wanted to say hello!Last summer I started having palpitations pretty much constantly. I'd also been having a lot of other little problems, joint pain, migraines, etc. so I finally went to see my doctor. Went through the gamut of blood testing, had my thyroid checked, checked for arthritis, lyme disease, and a half a dozen other things before I finally got sent to a cardiologist. In the past few months I've had an echocardiogram, a holter monitor, and a tilt table test. I've been diagnosed with mitral valve prolapse, inappropriate sinus tachycardia, and neurocardiogenic syncope. My doctors told me to give up caffeine for good (I'm very, very sad about that!) and I'm on 25mg Toprol daily.I've done some research but I'm still new to all of this so and there are some things I still don't understand. My doctor never actually diagnosed me with dysautonomia, but does that matter? Aren't all of these things part of the same constellation of issues? Also, I'm still a little fuzzy on the difference between NCS and POTS. I know that NCS is is diagnosed from a positive tilt table test and what causes fainting, while POTS is diagnosed by a drop in blood pressure upon standing. My doctor never mentioned that to me so I assume that I don't have it, but it's possible to have both, right? Is it possible to have NCS without POTS, or did my doctor just not mention it?Last, how on earth do you ever get used to drinking so much water?! My doctor told me to drink 100 oz a day, and that just seems impossible to me. I don't know if that amount was scaled for someone my size (I'm very short/small) or if that's how much he tells all his NCS patients to drink. On a good day I can get up to 60 oz but even then I feel like I'm going to pop! Does it get easier? Are there any tricks?Thanks!Bri Quote Link to comment Share on other sites More sharing options...
all4family Posted February 9, 2009 Report Share Posted February 9, 2009 Hi Bri,I just wanted to say hi and welcome. I am also pretty new to this, and don't have a lot of answers for you, but you will find a lot of answers here. I really get what you are saying about the drinking. Do you feel like you slosh when you walk? Did your doctor tell you to eat a lot of salt? That was my really hard one. But it is getting easier. I hope you find the answers you are looking for. Your in good and kind company here.Suzy Quote Link to comment Share on other sites More sharing options...
Katja Posted February 9, 2009 Report Share Posted February 9, 2009 welcome!POTS is diagnosed based on an increase in heart rate (+30bpm, or over 120bpm), as well as symptoms of orthostatic intolerance, upon standing. Your blood pressure does not have to drop - some doctors actually feel that if your blood pressure drops significantly upon standing, then you don't have POTS. I don't know much about NCS. Quote Link to comment Share on other sites More sharing options...
mjan Posted February 9, 2009 Report Share Posted February 9, 2009 Hello and a warm welcome to you here~!!Hang with us.. we learn along with way.. from one another.To me... still in process of getting ALL my diagnoses...I would rather be with a neuro who specializes in this Autonomic problems. But...thats just me.Be well..Warmly Jan Quote Link to comment Share on other sites More sharing options...
janiedelite Posted February 9, 2009 Report Share Posted February 9, 2009 Last, how on earth do you ever get used to drinking so much water?! My doctor told me to drink 100 oz a day, and that just seems impossible to me. I don't know if that amount was scaled for someone my size (I'm very short/small) or if that's how much he tells all his NCS patients to drink. On a good day I can get up to 60 oz but even then I feel like I'm going to pop! Does it get easier? Are there any tricks?For me, I just have to carry some liquid with me wherever I go. I keep a G2 by my bed at night so I can drink it when I first wake up because it contains sodium. I do feel really waterlogged at times, and I've only been forcing so much liquids for the last few days based on my doctor's recommendation last week. But my heartrate is much improved and I'm able to do more around the house ! I don't know if your doc wants you to take in a lot of salt, but salt helps us to retain fluids. I like salty fat-free chips or a cup of chicken broth (which has over a gram of sodium). Quote Link to comment Share on other sites More sharing options...
Guest brianala Posted February 9, 2009 Report Share Posted February 9, 2009 Thanks everyone! Yes, my doctor told me to increase my salt intake, too. Somehow I don't seem to have as much of a problem with that part though. Quote Link to comment Share on other sites More sharing options...
momofsara Posted February 9, 2009 Report Share Posted February 9, 2009 Welcome to our world, Bri-You have found a place where you will be encouraged, educated and always welcome. This forum has been a godsend for me. The only thing I will add to whats already been posted is to always get copies of your tests and reports. They will come in very handy many times. Sending you positive thoughts--Susan Quote Link to comment Share on other sites More sharing options...
firewatcher Posted February 10, 2009 Report Share Posted February 10, 2009 Bri,Welcome to our extended orthostatic family! I am sorry that you are here, but glad you found us! Ask us any questions and we will point you to the answers or give it to you outright! Don't forget to check out the homepage (top left link under the BIG DINET) many of your answers will be there! Quote Link to comment Share on other sites More sharing options...
Rachel Posted February 12, 2009 Report Share Posted February 12, 2009 Hi Brianala,Welcome to DINET! I'm glad you joined us. You said that your doctor diagnosed you with Neurocardiogenic Syncope (NCS). That does fall under the heading of dysautonomia. Dysautonomia is an umbrella term that covers many different types of autonomic dysfunction. NCS is a specific type of dysautonomia. POTS is defined as a rise in heart rate of 30bpm or more within ten mintues of standing. A drop in blood pressure is not necessary for a diagnosis of POTS. Some people with POTS actually have a rise in bp when they stand up. It is possible to have NCS without POTS, POTS without NCS, or to have both NCS and POTS.To make drinking water easier, I keep a water bottle with me and sip all day long. I even drink water during the night. Sometimes I'll drink a whole 32oz bottle at night. I drink a 14oz glass of Gatorade every morning and also a 12oz cup of coffee every morning. I usually drink a 14oz glass of water with lunch and supper. I'll have a 12oz cup of herbal tea in the afternoon and in the evening. Plus, I take sips from my water bottle throughout the day. When you add all of that up, it is over 100oz. Just take it in small glasses throughout the day and it all gets in!Make sure to check out the main DINET website. You can find a wealth of information there. Again, welcome! Glad to have you here, though sorry you have need to be.Rachel Quote Link to comment Share on other sites More sharing options...
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