jszesnatjr Posted March 25, 2015 Report Share Posted March 25, 2015 Hi I am a long time lurker first time posting. My name is John. I am 43 and I was diagnosed with NCS in December of 2013 after MANY MANY doctor visit. They thought it was vertigo and too many other things to remember. I can’t tell you how many time we changed doctors or went to the neurologist then to cardiologist then back and forth again. At first, and still sometimes, I think I’m going crazy thinking all of this is made up in my head. In December of 2013 I had a tilt table test 70 degrees (yuck). I don’t know what all the numbers mean but just after 15 minutes my HR dropped to 51 and BP started dropping from 112/80 to 84/42 and the sweating started. Then within 23 seconds my HR was 41 and my bp 60/0. <--- I Wish I understood what this really means. Anyway, the report said the test was Positive for type 1 mixed (primary vasodepressor) hemodynamic response. I have no idea what that means to be honest. The doctor put me on a beta-blocker, Metoprolol and loaded me up on sodium and hydrations. More salt and water. This seemed to work for a little while, at least it seemed to slow down the symptoms, dizziness, nausea, fatigue you know the drill. Then out of the blue it started getting worse. I actually started to have syncope issues and they seem to be getting worse. The dr started changing my meds but I feel like they don’t have a clue. So my wife got an appointment at NewYork-Prebsyterian/Weill Cornell. The doctor we are seeing is Dr. George Thomas. He works with Dr. Bruce Lerman. They specialize in clinical cardiac electrophysiology. I cant tell you how many times I have read stories and I know I am not crazy nor alone from all the info shared from this site and forum. Thank you and nice to meet everyone John Quote Link to comment Share on other sites More sharing options...
Raisin Posted March 25, 2015 Report Share Posted March 25, 2015 Nice to meet you John! It sounds like you are on the right track re getting further help. Keep the hope. Something that helped me was getting the full battery of autonomic testing. I had mine done at Cleveland Clinic through Dr. jaeger and it has been a great source of info. No cause found for me but I found out that I have significant blood pooling, sweating issues, etc. I think those tests, for me, have helped re medications, follow up, etc. so welcome! Hang in and we know you are not making this stuff up in your head! It's a journey. I hope this forum gives you a sense of hope and belonging. It has been that and more for me. Quote Link to comment Share on other sites More sharing options...
gjensen Posted March 26, 2015 Report Share Posted March 26, 2015 John, the way I understand beta blockers with NCS (someone correct me if I am wrong) is an attempt to calm the sympathetic response, and thus the over correction. Did your heart rate increase before the sudden drop, and if so, by how much? Sometimes salt and water is not enough. Some doctors will add florinef and/or midodrine etc. Especially if a beta blocker is used, which obviously, lowers blood pressure. If you are getting worse, and they are unable to help you get better, you may have to find a new doctor. Autonomic specialists are usually the most reliable. Now understand, I am no doctor. Even if I knew the specifics in your case, I am not qualified to make any judgments. You, I am sure, know more than I. I have a different presentation. I know what it feels like to doubt yourself, and get the run around. The right doctor can make a world of difference. They can be elusive. I wish you well, and hopefully someone will be more helpful than myself. We are close in age, and it is good to meet you. Quote Link to comment Share on other sites More sharing options...
jszesnatjr Posted March 26, 2015 Author Report Share Posted March 26, 2015 Thanks for the warm welcome and support. Going to look up autonomic specialist if this doesn't pan out. Quote Link to comment Share on other sites More sharing options...
corina Posted March 26, 2015 Report Share Posted March 26, 2015 Hi John, welcome to our forums! I thought to copy and paste the link to our physicians list for you just in case you might need a specialzied doctor! http://www.dinet.org/index.php/physician-listHope you will find the answers you need! Quote Link to comment Share on other sites More sharing options...
Katybug Posted March 26, 2015 Report Share Posted March 26, 2015 Hi. Hoping these links might bring some clarity to your diagnosis. Welcome to our community! circ.ahajournals.org/content/.../875.full.p...by AM WEISSLER - 1957 - Cited by 129 - Related articleshttps://books.google.com/books?id=x8_nZSPTT4YC&pg=PA932&lpg=PA932&dq=type+1+vasodepressor+hemodynamic+response&source=bl&ots=iGdhPa0igC&sig=HdJmAko8sM5iyTsqtg_cVUbjvLg&hl=en&sa=X&ei=l48UVcXpDqrisAT81YL4Bw&ved=0CD0Q6AEwBghttp://en.m.wikipedia.org/wiki/Vasovagal_response Quote Link to comment Share on other sites More sharing options...
db2504 Posted March 27, 2015 Report Share Posted March 27, 2015 Hi john. Welcome. Do not get discouraged because there are doctors out there who can help you. It took me and my daughter (she has it-I do the research) some time to get her diagnosis. i will keep u in my prayers and I hope u get an answer soon. Quote Link to comment Share on other sites More sharing options...
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