Neurocardiogenic Syncope - Rare Disorders Message Board

Superwoman07 · 06-13-2003, 02:47 PM

Is there anyone else out there that has been diagnosed w/ Neurocardiogenic Syncope?? If so, what forms of treatment have you been through?

Thanks!

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[This message has been edited by Superwoman07 (edited 08-04-2003).]

suezq0863 · 06-22-2003, 04:47 PM

Hey, I was diagnosed in Sept. of last year after 6 months of testing very just about everything. The doctor put me on Nadalol, and then added Florinef. I am now having problems again so he added Modidrin. I am currently wearing a loop monitor because the doctor thinks I need a pacemnaker. This condition really sucks. I would just like my life back. They keep telling me lots of fluids and extra salt. What about you.

Superwoman07 · 06-23-2003, 06:57 AM

I am taking Toprol XL (25 mg in the morning / 50 @ bedtime)...this is the THIRD betablocker I've tried, and it seems to work pretty well, but there are still times when I think I'm going to pass out... I lost my meds for 2 days and it was AWFUL-- my heart rate was through the roof. I was told to not go w/out eating... to drink a lot of fluids and instead of a high salt intake, Gatorade was recommended... I was taking salt tablets before I was diagnosed to keep my BP up, but the swelling was awful. Keep things like a pack of peanut butter crackers w/ you in case you start feeling funny... eating something like that will usually up your BP just enough to help.. I also always use a shopping cart when in a store... it gives me something to hold on to just in case. I COMPLETELY understand the frustration and just wanting to have your life back... I'd been married for all of 2 and 1/2 months when mine started... Do you have mitral valve prolapse as well? Or any other health conditions? I also have fibromyalgia... I'm asking b/c I'm trying to see if there is a link somewhere.
Good luck!!!

Quote:

Originally posted by suezq0863:
Hey, I was diagnosed in Sept. of last year after 6 months of testing very just about everything. The doctor put me on Nadalol, and then added Florinef. I am now having problems again so he added Modidrin. I am currently wearing a loop monitor because the doctor thinks I need a pacemnaker. This condition really sucks. I would just like my life back. They keep telling me lots of fluids and extra salt. What about you.

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[This message has been edited by Superwoman07 (edited 08-04-2003).]

~~NatureLovers~~ · 06-23-2003, 01:02 PM

Hi Superwoman and suezq......was wondering if you could give us a few of your signs and symptoms that led you to the dr. Were any other areas looked into and ruled out? What exactly is this?
Our son has been prescribed Aetonolol 12.5mg daily and major intake of salt, on foods and in tablet form , and must have Gatorade daily as well. But not sure of his diagnosis. Thanks

He also after a 2wk picu stay being rushed from school after episode and collapsed, mri showed rt frontal vein angioma, neurosurgeon stated nothing to worry about. Also found during echocardiogram hole in payton valley (?sp?). Treating yet not sure as vasovagele syncopy.

[This message has been edited by ~~NatureLovers~~ (edited 06-23-2003).]

Superwoman07 · 06-23-2003, 01:10 PM

Mine started w/ chest pains... heart attack-like symptoms... Sometimes the pain would start in my chest... sometimes my right arm would start hurting sooo bad... my jaw would become stiff and I'd get an AWFUL headache. Getting a deep breath would be almost impossible... like my chest was contracting and holding tight. These attacks would last anywhere from 3 minutes to 30... I have mitrol valve prolapse, so I was sent to a cardiologist. EVERY heart test (at least that I've ever heard of) was done on me-- even a heart cath... I was finally diagnosed after a Tilt Table Test in September of 02. Other symptoms include EXTREME lightheadedness / dizziness / queasiness... I've also had problems w/ hot flashes / cold sweats / seeing spots or glares or just blurry vision / ringing ears...And I sometimes black out. Most of the time I could feel it coming on and find a place to sit or lay down and that would help. The Toprol XL has helped a good bit (it took me a while to adjust to it), but I still have to watch it.

My condition is aggravated by weird things... If I tilt my head back too far to look @ something (several close calls in Home Depot!)Or sit up or stand up too fast... If I haven't eaten... if I get too hot...
I cannot stand for very long at all (more than 15 minutes) w/out the problem acting up. It helps to move around or 'pump' my calves when I feel this coming on.

Neurocardiogenic Syncope (from my understanding) is when your brain stem shoots a message to your left ventricle telling it that it is not pumping enough blood... Your LV then goes into overdrive pumping away which causes your heart rate to go through the roof and your blood pressure to drop (therefore causing the syncope -or fainting). It still has not be determined if my chest pains were caused by this or if was fibromyalgia related. I had presence of arrythmia as well....
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[This message has been edited by Superwoman07 (edited 06-23-2003).]

[This message has been edited by Superwoman07 (edited 08-04-2003).]