New Here

Greetings to all from Maine:

I've been lurking on this site for the past 2 weeks and am so relieved to see that so many people have the same questions that I have had.

My story is one that reinforces the old saying: Trust your instincts.

Long story short: I've been misdiagnosed for over 10 years with "epilepsy" - - - when I've actually had malignant vasovagul syncope aka neurocardiogenic syncope.

I had questioned my neurologist for years regarding causes of my continuing episodes and he would respond by upping my meds and telling me that I just had to accept the fact that I had epilepsy. Even when another doctor in his office suggested to me that I get a Tilt Table Test - he scoffed at me and told me that it would be a waste of my time and money.

Well, 3 minutes into the nitro I flatlined - twice. Had to have CPR right there in the testing room. Had the test on 12/15/08: Had the pacer put in on the 17th.

I'm still reeling. Have to remember to breath sometimes. Feel hypervigilant. Feel angry. Feel betrayed. Feel relieved. Looking forward to getting off the seizure meds I didn't need.
Just because someone has a diploma from Harvard on his wall and had been practicing for 20 years doesn't mean they're always right.







5 Comments

Interesting

by maryanne - 2009-01-05 11:01:11

I am glad you have gotten to the route of your problem....but I have a question...where was your GP through all of this....what about your physicals....did no one ever think to have you wear a holter monitor or at least have an ECG, BP monitoring? That all just seems so strange.

Now I have been hearing a lot about the neurocardiogenic syncope and have done a lot of research on it.... and to me it is just a fancy word for syncope....which of course can be caused for a variety of reasons....low blood surgars, vaso vagal response to repositioning, hypotention, drugs and others. Neurocardiogenic syncope is a neurological response to a decrease in cardiac output which causes you to become faint(syncope). It's nothing new.

I am glad you got to the bottom of things...but I would be questioning your GP as well.

Welcome to the club...and all the very best....

welcome

by bowlrbob - 2009-01-06 12:01:59

There are quite a few of us on here who have VVS or NCS whatever you want to call it. I was diagnosed 3 years ago. My pacer keeps me alive. I flat lined at least 3 times that i know of the day before getting the pacer. The pacer gave me back my life and I am now released except for the 6 month readings. I only take 1 medicine Atenolol 25m for a slight high blood pressure. Otherwise I have no restrictions. The rate drop response was turned on and set up 3 years ago and now I have no fainting or dizziness. So if you want to talk or ask questions myself or Ella girl have both been there so ask questions or private mail us. We will be glad to help if we can. Bowlrbob

CPR

by Jade - 2009-01-07 02:01:03

I had to have CPR during the Tilt test. I told them I didn't need pepper spray for attackers, just get some of the spray nitro and it would drop a rhino.

I have had neurocardiogenic syncope probably all my life, but just was diagnosed.

I too have felt some negative emotions towards the medical field for misdiagnoses thru the years.

A "specialist" told my mom when I was 5, my passing out was her having empty nest syndrome!!

She told him she had picked me up off the floor enough to know there was something wrong with me, not her empty nest.

So what damage did going DECADES with this problem cause? And I had a severe vitamin D defiency last year that can cause damage to the heart.

Research, Read, and learn as much as you can.

I took seizure medicine for migraine, then stopped it because of the side effects. I really feel for you taking that!

take control

by Tracey_E - 2009-01-07 05:01:19

Like maryanne, I'm amazed they didn't do a holter and tilt test on you sooner. You've got every right to feel angry and betrayed! For the sake of your own mental health, try to concentrate on the relief more than the negative.

I'm a strong believer in doing my homework and taking control of my own health. They doctors may have a diploma on the wall, but they don't know me like I do, and they aren't invested in my health like I am. Any doctor who has a problem with treating me like an intelligent adult and answering my endless questions and listening to what I have to say, well they aren't the doctor for me! You got a new doctor, didn't you???

Thanks all

by J-M - 2009-01-07 09:01:47

Appreciate all the feedback!

Guess I should have mentioned that I did have all the other tests over the years. Just tried to keep my post to a minimum. Anyway, my problem was that all the tests came back negative. My spells are (were?) so sporadic - I only had about 5 a year - that the likelyhood(sp?) that I'd have one while wearing the holter etc was pretty remote.

Again, thanks for the responses.

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