It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Rare Disorders Message Board

  • Neurocardiogenic Syncope

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 06-16-2006, 09:12 AM   #1
    saraharl
    Newbie
    (female)
     
    saraharl's Avatar
     
    Join Date: Jun 2006
    Posts: 1
    saraharl HB User
    Re: Neurocardiogenic Syncope

    hi i was just diagnosed after a tile table (out in 7min to the thrill of the nurse) and i had some questions. Does anyone else have swelling in their lower legs, i was perscribed TED hose with the Toprol and if i dont have them on my calfs swell and hurt. Also does anyone know if haveing this means you cant scuba dive anymore? THanks! also, is there anyway to join the other NCS group?

    Last edited by saraharl; 06-19-2006 at 08:10 AM. Reason: adding

     
    Sponsors Lightbulb
       
    Old 10-29-2006, 11:25 PM   #2
    taloura
    Newbie
    (female)
     
    taloura's Avatar
     
    Join Date: Oct 2006
    Location: Chouteau, OK
    Posts: 2
    taloura HB User
    Re: Neurocardiogenic Syncope

    I was diagnosed last December but I have been passing out from it since I was 16 and I am now 24. I don't wear TED hoses but I do get pain and I have problems with being tired. I was told to take in a lot of salt which has caused me to gain weight. I really can't give you any advice except try making time to put your feet up.

     
    Old 12-11-2006, 11:19 PM   #3
    johnson1226
    Newbie
    (female)
     
    johnson1226's Avatar
     
    Join Date: Dec 2006
    Location: AL
    Posts: 2
    johnson1226 HB User
    Question Re: Neurocardiogenic Syncope

    hi. i got diagnosed with the condition 2 years ago. I have been struggling with it. i just have one question. what types on medication are you allowed to take for colds? i haven't found anything to take to help with congestion and coughs. if you have any suggestions that would be great.

     
    Old 12-30-2006, 10:48 PM   #4
    taloura
    Newbie
    (female)
     
    taloura's Avatar
     
    Join Date: Oct 2006
    Location: Chouteau, OK
    Posts: 2
    taloura HB User
    Re: Neurocardiogenic Syncope

    You can take any med that you want I would however check with a pharmacist to make sure that it doesn't interfear with any other meds that you are on.

     
    Old 02-15-2007, 11:27 AM   #5
    Crave~
    Newbie
    (female)
     
    Crave~'s Avatar
     
    Join Date: Feb 2007
    Location: Tucson
    Posts: 3
    Crave~ HB User
    Exclamation Re: Neurocardiogenic Syncope


    hi everyone! I was just wandering if anyone besides me is completely frustrated with all of this medical stuff? I will be put in the hospital for the 2nd time, for observatin... here are some of my symptoms:
    -dizziness
    -severe head pressure
    -hot sweats (sometimes)
    -heart palpatations
    -hillusinations (sp) (sometimes...)
    -shaky
    -chest pain
    -FATIGUE!!!!
    -hard to breath (sometimes)
    -blurred vision
    -WEAK
    those are pretty much all that I can think of... I was diagnosed with Syncope not to long ago, probably about a year agao, and have been put on third line drugs, but nothing seems to have worked. I barely ever make it to school, and I am a cheerleader, and cant go to my competion coming up I am over frustrated! They think that they have some what controlled the syncope with the meds, and think that I am having other problems.
    They thought that I was having Panic or anxiety attacks, and put me on Zoloft to try it out, but found that I hillusinated and was doing worse, so now Im off of that! I was also on a sleeping med that was supposed to help with the severe head pressure with them thinking that they could be migrains, but they took me off of that as well. Someone who my mom works with suggested me getting tested for Lupus, b cuz I have some rashes, but I have always had some difficulties with my skin, so we dont really think that is what it is, but we are definetely going to get tested! We are at our witz end, and are willing to try anything at this point. I am 16, almost 17. If anyone has ANY advice, I would be most appreciated!!! thank you so much!

     
    Old 04-05-2007, 03:10 PM   #6
    kelinva
    Newbie
    (female)
     
    kelinva's Avatar
     
    Join Date: Apr 2007
    Location: Front Royal, VA
    Posts: 1
    kelinva HB User
    Red face Re: Neurocardiogenic Syncope

    I have just been disgnosed today... I'm a little freaked out. Does this mean I can never drive again? Apparently I have had this problem (passing out for no apparent reason) since early childhood, but since 9/6/07 it is a CONSTANT problem. I have passed out standing, sitting and laying down; heart rate drops to the low 20's and blood pressure is non-existant. What kind of life can I expect? Will I be able to work again, drive, live a normal life? Help!

     
    Old 04-11-2007, 09:00 AM   #7
    ode_to_fantasy
    Junior Member
    (female)
     
    ode_to_fantasy's Avatar
     
    Join Date: Apr 2007
    Location: Gainesville, Florida, USA
    Posts: 13
    ode_to_fantasy HB User
    Re: Neurocardiogenic Syncope

    if your heartrate drops below the 40's I think they might recommend that you get a pacemaker. Perhaps if you got a Pacemaker you would be able to drive? I know that I am not allowed to drive...but it seems that some people are, I guess it depends on what your doctor tells you.

     
    Old 04-17-2007, 02:55 PM   #8
    cwjackson
    Junior Member
    (male)
     
    cwjackson's Avatar
     
    Join Date: Nov 2006
    Posts: 16
    cwjackson HB User
    Re: Neurocardiogenic Syncope

    Hi, I'm 31 and after 6 months and tons upon tons of medical bills, I was finally diagnosed with neurocardiogenic syncope yesterday. This disorder has completely changed my life. My cardiologist has prescribed Toprol XL and Celexa to try to alleviate my symptoms. What kind of meds have worked best for those of you that have NCS? What do you do to help cope with NCS everyday? Have any of you had success in treating this disorder? Any feedback is greatly appreciated.

     
    Old 04-19-2007, 09:23 AM   #9
    lyn777
    Newbie
    (female)
     
    lyn777's Avatar
     
    Join Date: Apr 2007
    Location: Orlando, FL USA
    Posts: 5
    lyn777 HB User
    Re: Neurocardiogenic Syncope

    Hi, I am on Toprol XL too, it seems to be helping I have gone from numerous episodes a day to one every couple of weeks! I was wondering if anyone might know if NCS is considered Heart Disease? Thanks

     
    Old 04-19-2007, 10:38 AM   #10
    cwjackson
    Junior Member
    (male)
     
    cwjackson's Avatar
     
    Join Date: Nov 2006
    Posts: 16
    cwjackson HB User
    Re: Neurocardiogenic Syncope

    lyn777- I am unsure if NCS is considered heart disease. From all that I have read, it is an autonomic dysfunction, a miscommunication between your brain and your heart. If your NCS was caused by something abnormal with your heart like tachycardia, which has caused my NCS, mabye it can be considered heart disease. My cardiologist really didn't go into detail with me about it, he said to go online and find more about NCS. That's what I hate about DRs' they tell you that you have to cope with this the rest of your life, but then don't spend time with you to talk about it. How many mg Toprol XL do you take, and how long did it take before you could tell a difference? Are you on any other meds that help you with the NCS? Thanks, cwjackson

     
    Old 04-20-2007, 04:53 AM   #11
    lyn777
    Newbie
    (female)
     
    lyn777's Avatar
     
    Join Date: Apr 2007
    Location: Orlando, FL USA
    Posts: 5
    lyn777 HB User
    Re: Neurocardiogenic Syncope

    I am on Topral XL 25mg, I was up to 50mg which I understand are low doses but I was getting terrible headaches so I went down in dosing. It took me about 3 months before the episodes started subsiding. And yes I agree with you. Most Dr's don't even listen to what you say, they assume alot and are very noncommittal which can be very frustrating. My heart rate and blood pressure both go towards zero when I have an episode, isn't that fun

     
    Old 04-20-2007, 05:42 AM   #12
    cwjackson
    Junior Member
    (male)
     
    cwjackson's Avatar
     
    Join Date: Nov 2006
    Posts: 16
    cwjackson HB User
    Re: Neurocardiogenic Syncope

    lyn777-I was hoping that my symptoms would subside sooner than 3 months. Wishful thinking I guess!! I actually feel worse than I did before I started taking the new meds. I only experience my symptoms while standing, about 15 min. after waking up. My heart rate shoots from 90bpm to over 120bpm when I stand and my blood pressure either shoots up or goes down. Then I stay lightheaded and blurry eyed all day.I work in a convenience store and have to stand all day which makes for an enjoyable experience. My boss and co-workers don't really understand what I'm going through. I have been off work for 2wks because of an appendectomy, I dread having to go back and deal with it. It took me 3 Dr's, a neurologist, a cardiologist, and $30,000+ in medical bills before I got diagnosed, it's lovely when you don't have insurance.

     
    Old 04-20-2007, 06:56 AM   #13
    lyn777
    Newbie
    (female)
     
    lyn777's Avatar
     
    Join Date: Apr 2007
    Location: Orlando, FL USA
    Posts: 5
    lyn777 HB User
    Re: Neurocardiogenic Syncope

    Oh my!!! The toprol takes awhile to adjust too, and it also slows down your metabolism. But it does get better. I too know how frustrating it is to go from one appointment to another without any answers. I can't imagine the dispair you must have with the rising medical bills!! It is hard for other people to understand, just keep faith in yourself. You knew something was going on and now finally you have a diagnoses!! And they should not give you any problems at work. Do you have a stool you can sit on at the register to take a break? Did they tell you about the leg exercises that you can do to strength your leg muscles which really does help?

     
    Old 04-23-2007, 12:59 PM   #14
    cwjackson
    Junior Member
    (male)
     
    cwjackson's Avatar
     
    Join Date: Nov 2006
    Posts: 16
    cwjackson HB User
    Re: Neurocardiogenic Syncope

    Lyn777 I wasn't informed about the leg exercises, what type are they?

     
    Old 04-24-2007, 06:23 AM   #15
    lyn777
    Newbie
    (female)
     
    lyn777's Avatar
     
    Join Date: Apr 2007
    Location: Orlando, FL USA
    Posts: 5
    lyn777 HB User
    Re: Neurocardiogenic Syncope

    You tighten the muscles in your legs and lower abdomen and hold it for 30 seconds. And do this periodicly during the day. It doesn't matter if you are standing or sitting.

     
    Closed Thread

    Related Topics
    Thread Thread Starter Board Replies Last Post
    how rare is neurocardiogenic syncope? cbjag2 Rare Disorders 9 09-30-2011 01:21 PM
    If Neurocardiogenic causes syncope , what causes the horrible cramps and pasting out Hypo-Sharon Brain & Nervous System Disorders 2 06-05-2008 12:59 PM
    Neurocardiogenic Syncope symptoms going away and then all of a sudden coming back? kat314 Rare Disorders 1 02-05-2008 11:17 AM
    Neurocardiogenic Syncope Superwoman07 Rare Disorders 147 05-24-2006 06:26 AM
    Neurocardiogenic syncope-waking from sleep to pass out februarygirl High & Low Blood Pressure 1 05-13-2005 04:32 PM
    lupus/ vasovagal syncope (neurocardiogenic syncope) mtm9138 Lupus 5 02-13-2005 11:17 AM
    Neurocardiogenic / Vasovagal Syncope collardak Heart Disorders 15 09-13-2004 02:41 AM
    neurocardiogenic syncope sgwlamb Rare Disorders 0 08-05-2004 04:07 PM
    Syncope vs. Seizures jpos Rare Disorders 3 06-18-2004 02:58 PM




    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 02:54 AM.





    © 2021 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!