mome22 Posted March 29, 2004 Report Share Posted March 29, 2004 Hi all, I am new to the boards and was wondering if neurocardiogenic syncope is the same as POTS? I have a 13 yo daughter that was Dx with NCS at 12. I read one of the posts about a senior in high school having trouble with the teachers understanding the condition. I went straight to school clinic with a note from the doctor explaining her condition because the teachers werent allowing my daughter to go to the clinic or bathroom. Being 12 she didnt really want people to know she was having a problem and asking to go to the bathroom instead of the clinic when she was getting the dizzy, faint, tunnelvision feeling. Well when she came home one day and looked horrible I called the school and spoke to the nurse, she gave her a permenant pass to the clinic and restroom. She no longer gets told no when she asks to leave the room. The nurse talked to each of her 8 teachers individually and explained her condition. After they found out that she can "pass out" and drop her BP and heartrate when she faints they were a little more happy to send her to the clinic. She is on Atenolol. Let me know if I have the right boards before I keep rambling. LOL. Thanks Quote Link to comment Share on other sites More sharing options...
Merrill Posted March 29, 2004 Report Share Posted March 29, 2004 mome22--Yes, you've come to the right boards, and no, POTS and NCS are not exactly the same thing. However, both are disorders of the autonomic nervous system. The Forum on this site is a fantastic place to get information and advice--even to rant a little when you and your daughter are having a tough day. However, I highly recommend that you read everything you can about dysautonomias (NCS in particular, since that's what your daughter has been diagnosed with). Education is power--and you'll be needing that power as you wend your way through the medical system to find your daughter knowledgable and empathic doctors. You'll also need it to educate her high school teachers in a year or two! There's much terrific info to be had on the potsplace.com home page and links; also be sure to visit the ndrf.com web site (national dysautonomia research foundation); go to the "references" section and read the pdf versions of the books listed there. Good luck to you both--wishing you healthier days ahead.Merrill Quote Link to comment Share on other sites More sharing options...
mome22 Posted March 29, 2004 Author Report Share Posted March 29, 2004 Merrill, Thanks for replying! Can you tell me the difference between the two? I found this site by actually looking something up for me. I have a very fast heart rate and am on Atenolol also. In the past my symptoms were the fast heart rate, feeling faint, low BP and others. The symptoms I have been having is slightly different than before. I get headaches, cant bend down then stand up too quickly because I get dizzy I am trying to figure it out. I just got dx with a murmur and had an echo done, getting the results today. I am 31 and have been going thru all this for years, since before 18 and have gotten sooo many dx. Any ideas? Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted March 29, 2004 Report Share Posted March 29, 2004 Dysautonomias are related to each other, but differ in some symptoms/effects. From the main DINET board, here is the POTS overview:http://www.dinet.org/pots_an_overview.htmand here is the NCS overview:http://www.dinet.org/NCS/ncs.htmThe differences lie in the symptoms, in particular, with NCS, there is "syncope" or fainting. This doesn't mean that you always lose conciousness...for me, it's a "near faint".I have BOTH POTS and NCS.For additional descriptions, see NDRF free PDF downloadable handbook on dysautonmias:http://www.ndrf.org/NDRFHandbook.htmor look at their descriptions here.http://www.ndrf.org/autonomic_disorders.htmLastly, check out www.dynakids.org as they are geared specifically toward kids with autonomic disorders. Nina Quote Link to comment Share on other sites More sharing options...
mome22 Posted March 29, 2004 Author Report Share Posted March 29, 2004 Thanks Nina! I am going to check out all the links. Quote Link to comment Share on other sites More sharing options...
Merrill Posted March 30, 2004 Report Share Posted March 30, 2004 Mome22--I would have answered the question/s you asked me the way mm did--by pointing you toward some informative Web pages and articles that are written by experts in the field. I couln't explain NCS vs POTS any clearer than the sites mightymouse pointed you toward--in fact, I'd probably much it up and leave you even more confused! (But I wanted to post a reply, lest you think I hadn't been keeping up with you.)I hope you find the information you're looking for! Take care,merrill Quote Link to comment Share on other sites More sharing options...
mome22 Posted March 30, 2004 Author Report Share Posted March 30, 2004 Merrill, Thanks for replying. It is glad to know that I can get help here. You all have helped me alot and I greatly appreciate it. I am sure I wil think of more questions soon, I hope I get replies then. LOL. I think the worst thing is when you post and lots of people read but noone replies. I wouldnt even mind a "sorry i cant help you with that one". Just to know that people are going thru this and we are not alone helps. Thanks Melissa Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted March 30, 2004 Report Share Posted March 30, 2004 Hello mome22, welcome and yes you are in the right place. Sorry it took so long to drop you a reply...NEVER take it personally, we are all our funky potsy selves and unfortunately we sometimes are funky at the same time!!! Wouldn't it be wonderful if we could actually "book" a week of symptoms and then have some planned not potsy times!I really couldn't address your question accurately because I was first told I had POTS, then four years later they added the NCS and then recently (Mayo Clinic) said it was less of NCS and more of hyper adrenergic POTS because I have denervation of my legs and splanchnic areas. Sooo, the abbreviated explaination is what you have been told now may in fact change, however all those type of symptoms share the "dysautonomia" label.Well anyway, I'm glad you found us and keep that super pro-active style! Warmly, tearose Quote Link to comment Share on other sites More sharing options...
mome22 Posted March 31, 2004 Author Report Share Posted March 31, 2004 Tearose, Thanks for replying. Wouldnt it be funny if everyone did have the symptoms at the same time. At least we would be able to know when things are happening.LOL. Do you take any meds for your condition? My daughter is on Atenolol 25 mg. But being a young teen she always forgets it. i feel like im giving meds out all day between my 2 kids. Oh well thats why Im a stay at home mom I guess. Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted March 31, 2004 Report Share Posted March 31, 2004 I can't take any medication because what would help the POTS would agrivate two other conditions I have. ( I can't take in too much salt because it would inflame the lymphedema I have in my left arm and leg. I can't take a beta-blocker because my heart rate is low when I lay down.) My daily treatment plan consists of: a body compression garment that goes from my mid thigh to my breast, a pair of 30-40mm compression pantyhose,(on rare occasions I will go lower to the 20-30mm level if I need a break), I always use a heart rate monitor and I also use lymphedema compression. I have teased that getting dressed in the morning is an aerobic exercise for me, and actually it probably is! I do maintain a good daily balance of water, electrolytes, and vitamins. I am not a religious person however spirituality and a positive attitude have been important to me on a daily basis too. I try to see blessings in my life where I might have missed them if I weren't paying attenion...I mention this because for me it is an important part of my healing/living process. Whatever healing plan works for you and your children is the right one. Be well, tearose Quote Link to comment Share on other sites More sharing options...
goldicedance Posted March 31, 2004 Report Share Posted March 31, 2004 Check out www.dynakids.org for information especially of interest to parents and children who have dysautonomias.Not only does this site have interesting information but also has a place where one can get adorable medic alert bracelets. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.