Follow Up...

Wow what a road I have been down over the past month. I appreciate the advice I have received here. Today I had a Tilt Table Test. I was passed out cold in less than 8 minutes. It would have been sooner if I wouldn't have convinced the man giving the test to unstrap my legs to allow me to bend them. They have diagnosed me with Neurocardiogenic Syncope and I show the signs of Heart Block but he feels these will go away if we treat the syncope. The 2 treatment options at this point are Proamatine or a PM. I am going to try the medicine first but the doctor says it is hit or miss and has a lot of side effects. It has been so frustrating diagnosing this. I have dealt with everything from the doctor telling me I was fine to my employer telling me that I was lying and making it all up because I was too young to have a heart condition. Anyone know anything about Neurocardiogenic Syncope, Heart Block, or treatment with Proamatine? Thanks to you all again!

3 Comments

Welcome to the NCS club...

by ela-girl - 2008-05-01 06:05:38

Hi, BriBoy.

There are a number of us on the site with neurocardiogenic syncope (NCS). This condition also goes by other names, too, so try not to get confused! And feel free to ask whatever questions you can think of...we will do our best to share our experiences in hopes of helping you and letting you know you are not alone.

I replied earlier today to a post where a member was saying how doctors didn't believe what the person said was going on. I, too, had this problem. I suffered from blackouts (with no warning signs a blackout was coming) for 5 years. Instead of rewriting all I said, check out the post titled "Dealing with Pacemaker". You can also pull up other posts/replies about NCS and the like by using the "search" feature in the upper right hand corner in the gray.

My old cardio didn't know how to deal with me, so he drugged me with Toprol XL 50mg daily. He also didn't believe what I told him was happening to me because no tests ever caught anything (except I did have a positive tilt table). I was also told I was too young for these problems (I am 30 now). I was on this med for it's beta-blocking effects--I don't feel it helped at all and it just made me even more tired and sluggish than I already was. Let me know if you want a further explanation of how a beta-blocking drug is supposed to help with NCS (I also have severe bradycardia and heart block along with the NCS).

In my humble opinion, good luck treating the syncope. I don't know many people who stop having syncope just by trying things like compression stockings, having a higher salt diet, drinking sports drinks to keep the electrolytes up, etc. I wish you the best, though!

Have you been to see an EP (electrophysiologist) yet? They are a cardiologist with 2 or more years of training specifically in the electrical system of the heart. Heart block is an electrical problem so...you may want to see another doc about this. I doubt it's just going to "go away". I would hate to see you suffer for longer than is necessary...sounds like you may need to look into this more...

For me, the pm saved my life and gave me a quality of life I hadn't had in MANY years. I haven't had any problems since (although you can still have your previous symptoms even after a pm--the pm can only do so much).

Ok. I've lost my train of thought for now, but feel free to message me or add to your post here.

We're here for you!
ela-girl

NCS

by BriBoy01 - 2008-05-01 06:05:47

The doctor I am seeing is an EP. I have another visit with a different cardiologist May 7th for a second opinion. I really hope the medicine (proamatrine) helps but from what I am reading online it doesnt seem likely, but Im staying positive I read your other post and know exactly what you are talking about. I am 25 and active so the doctors and my employer all think that I am totally healthy, but most days I struggle to have enough energy to function. Are there any good places for information regarding Neurocardiogenic Syncope? The EP explained it to me that it is caused by my reaction in my body that slows my pulse down naturally is overactive. Does that make sense?

Some info...

by Swedeheart - 2008-05-02 12:05:38

Hello,

I do not know much about Neurocardiogenic Syncope, but have read a little about it. According to an article at WebMd:

Neurocardiogenic syncope occurs when blood flow to the brain is decreased due to reduced blood flow from the heart and falling blood pressure. The exact cause is often unknown and syncope can occur with little forewarning. Therefore, physicians have traditionally discouraged patients with this type of syncope from driving.

The article talks about driving with this "issue" ~ if you'd like to read the article here is the direct link:

http://www.webmd.com/news/19991215/people-with-fainting-spells-may-be-able-to-drive-safely

Here is another short article from webmd about vasovagal syncope:

http://www.webmd.com/heart-disease/tc/fainting-topic-overview

About.com offers what appeares to me to be information that looks useful on treating vasovagal syncope:

http://heartdisease.about.com/cs/arrhythmias/a/Syncope3_2.htm

You might also check out some of the other medical sites online to see what they say about this. The Cleveland Clinic has a good site and may offer information.
www.clevelandclinic.org

Good luck!

Swedeheart

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