Discussion Topic

15yo daughter with neurocardiogenic vasovagal syncope

Posted on 09/30/11, 10:55 pm
I would like to find someone with a teen that has been diagnosed with neurcardiogenic vasovagal syncope. My daughter was diagnosed 3 yrs ago which took a year to find a doctor that figured out what was going on. Her syncope is different from anyone else that I could find. She does not have fainting spells. She gets dizzy the ENTIRE TIME she is standing up. If an episode lasts longer than 1 day it will last 7 days up to 14 days. The doctor stated that she would starting fainting so we keep her in a wheelchair in public or at school or she crawls everywhere at home. The doctor stated that she would "outgrow" this. Well, its been almost 4 yrs since the first symptoms and frankly I'm tired of it. I can't imagine how she feels when she can't do what her friends are doing because she can't walk. I was just hoping someone else's teen has this but been treated with some kind of treatment. Thanks.
Jodi
Showing 8 Replies
  • Reply #1 10/03/11  6:32am
    Sounds like you and your daughter are having a terrible time.I know this may sound bit scary but has anybody said anything to you about your daughter having a pacemaker. I'm 45 and had one fitted in Feb and it has made a big difference to me. I used to feel giddy, constant headaches, funny numbness in legs and face, constantly tired, sicky feeling and odd fits. When I had my last tilt table test my heart stopped for 67 seconds. Even though I wasn't in a wheel chair I stopped aerobics and would only go out with people I really trusted. Did get myself to work but when there often struggled to get stuff completed, the same with house work. I do think I will always have to be careful and drink plenty of water and look after myself but I'm back down the qym, doing housework fine and more importantly am do longer terrified when I go out.

    Sue
  • Reply #2 12/22/11  11:51pm
    I'm 19 and just diagnosed with NCS in May. I was getting worse by the day until they put me on Norpace. I still have awful days and still have horrible episodes but they are getting fewer. If you haven't tried it, talk to your doctor about norpace. It's a high risk drug but it seems to have helped a little more than anything else. I am on 8 pills, which never wanted to live a life like that but if she needs someone to talk to, I'd be glad to be here for her.
  • Reply #3 02/10/12  12:18pm
    My daughter is 16 and has had it for about 3 1/2 years.. She's always feeling dizzy and has passed out many times.. Most of the time she can't remember things during and after an episode.. I've been looking for teens her age so she can talk with them and know shes not alone and maybe help her have more in common with others. She has a low self esteem because shes always being told what she cant do verses what she can.. Its very frustrating...
  • Reply #4 05/17/12  11:47am
    My 11 yr old was recently diagnosed. She's been ill on and off since Dec 2011. First med worked but she was allergic to it. New med not working as well. I just want my kid back. I miss the fun loving girl who had not missed school for 3.5 years before now. The school calls me several times almost every week. It's been a roller coaster ride for sure. Emily is now spending a lot more time in the house. She is still playing sports but it's taking a toll on her. She has always been active but now often lays around and doesn't do as much.
  • Reply #5 05/18/12  12:38pm
    I'm so sorry for your frustration, rjallen! I just joined this group feeling frustrated as well because my 16yo son has been going through the NCS thing for over a year and he's still in bed right now because he almost fell down the stairs this morning.

    I am sorry I'm no help with your always dizzy never fainting daughter. We have to deal with both, even on meds. They are just not helping like I want.

    I suggest, to everyone and to myself (about to do this) to get a second opinion from another pediatric cardiologist. I like mine, but I want to hear someone else's opinion.
  • Reply #6 05/22/12  10:18am
    We are now considering 2nd opinion. I'm sure my daughter has NCS but don't feel like it's being controlled as well as it could. Yesterday I had to rush home from work as Emily was short of breath. This is the first time this has happened. She was scared as was I. I took her straight to the cardiologist office. Her heart rate was low but blood pressure and all else seemed o.k. They did an ekg and monitored her for a while. Her heart rate got better. The doc said we could increase her midodrine but he didn't do that. Bloodwork, urinalysis, 24 hour heart monitor. In my heart I'm beginning to feel she is going to be one of the chronically ill - but my goodness, she is 11, such a great kid and way ambitious. She is starting a new school next year, all girls, exclusive private school that offers such a great education. She is one of 34 to get into to the 7th grade program. I find myself on edge constantly and worry about my job to some extent. They have been understanding but would liket o see me go part time. Not sure we can financially handle that with all of the medical bills, school tuition and life in general....
  • Reply #7 05/25/12  9:14am
    So after 2 unscheduled visits to the cario doc this week with a very symptomatic daughter he now tells me that in addition to the NCS Emily has POTS. They had put the 24 heart monitor on her. At one point her heart rate (norm for her is 85 beats per minute) was up to 174!! Scary stuff - even more so because she did not recognize it was happening. At other times when she thought her heart was racing it wasn't. I'm sad and scared for her. They are adding a beta blocker to her meds and talking about using birth control also.
  • Reply #8 06/14/12  9:40am
    I am 20 and recently got diagnosed in April.If Anyone Needs Advice Im Happy Too Be Here.

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