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Neurocardiogenic Syncope (Vasovagal Syndrome)
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MedHelp Member's Question

Neurocardiogenic Syncope (Vasovagal Syndrome)

by Stephanie Lee, Apr 07, 2000 12:00AM
I'm 15 years old and was diagnosed with NCS over a year ago. Besides fainting, heart palpitations, seizures, tremors, insomnia, and head pounding migraines are a constant reminder of it in my daily life. The doctors are totally clueless on what to do. I was diagnosed with this disorder after being on the tilt for only 30 seconds (without the IV and medication) I have to admit that I am better after cutting things out of my diet such as soda pop, chocolate, and anything that contains caffeine or aspartame. I drink over 5 bottles of Gatorade a day and eat gross amounts of salt on everything I eat. This has cut down on my daily fainting. Before this diet I was fainting up to 9 times per week, even sitting down. After I woke up seizures would occur as well as vomiting. I almost went to cardiac arrest at the hospital. This disorder has been a burden to live with. Currently I'm taking Florinef twice a day. The only thing it seems to eliminate is the migranes. I still faint and can not stand it anymore. I'm 15 years old and should be out there having the time of my life instead of sitting inside my house every weekend fearing that i might faint. If anyone has any suggestions please tell me....Thank you...Stephanie Lee
Doctor's Answer

by CCF CARDIO MD - DLB, Apr 07, 2000 12:00AM
I am not sure that NCS is responsible for all the different symptoms you mention. Certainly, it could be responsible for the fainting. In addition to Florinef, there are other medicines that  could be tried; much of finding what works is a matter of trial and error. The best doctor to do this is a cardiac electrophysiologist. In addition to keeping well hydrated, fitted compression stockings can also be useful in some cases to prevent fainting.
Member Comments (53)

by Greg, Apr 07, 2000 12:00AM
I can sympathize..i have psvt and pvc's and now what i believe to be atrial fib (not caught on monitor yet)and it all seems to be vagally mediated (sometimes, if conditions are right, i can trigger my own psvt by just bending at the waist and coughing). and still yet, many doctors refuse to belive that there is a link to arrythmia!!! i havent had a tilt table test, and my internist believes there is no need for one...he seems indifferent to my problem....hes history though as soon as i find a good cardio/ep.

by Lissan, Apr 07, 2000 12:00AM
Stephanie-

I was recently diagnosed with NCS and had the tilt table test done.  I am taking atenelol and have begun to feel better.  I am still not 100% better.  I do not get much support from my doctors, but I am very persistent.  I am 23 years old.  I teach and have a life.  This illness has affected my job, my driving and my social life.  I completely understand where you are coming from.  Although I have been feeling better than I did before I was on medication, I still have bad days(weeks).  Some days I can barely move.  I have missed a great deal of work.  I try to be optimistic, if not I could become very depressed.  Please be strong! I wish that there was more I could do or say.

by Mommydee, Apr 07, 2000 12:00AM
Caffeine could be a bad problem for you.  My older daughter was having problems with elevated blood pressure when she was 15, also dizziness, paleness, and faintness.  Finally, it was all tracked down to her caffeine intake.  She cut back on the caffeine and returned to normal.

My younger daughter started to get migraines at age 12, she is now 15.  Caffeine is a big trigger for her.  Unlike my older daughter who can still have caffeine in smaller quantities, my younger daughter can have NO caffeine, not even the small amount in chocolate.

Dee

by Stephanie Lee, Apr 08, 2000 12:00AM
This is a follow-up on my post....

I have been on all the medication that my body can handle...this is why the doctors are clueless. I am allergic to many medicines making it more difficult to find something that will work. all these symptoms are related with NCS and have been occuring with other people my age that also have this disorder. I thank you for the info...please keep me more posted...and may God be with all the people that suffer from this...for i have been to hell and back.

by Cindy, Apr 11, 2000 12:00AM
my 17 year old daughter has been diagnosed with ncs and prescribed a combination of lopressor and theophylline (low dosage of both).  She had a positive tilt table test; symptoms were dizziness, fainting, temporary loss of vision - all of which ocurred 2-4 times daily and wiped her out.  she has missed many days of school and seems to have many other minor health issues including:  non-specific arthritis, sleep issues, mild depression and anxiety.  She is also a vegetarian who will eat milk products, but no other animal protein and does take supplements.  please advise if any of these other health issues are related or complicated/complicating the syncope or visa versa.  the cardiologist is aware of this complete history.

by Jennifer Lichtle, Apr 16, 2000 12:00AM
My name is Jennifer Lichtle and I am 17 years old. I was recently diagonsed with Neurocardiosyncope and Gastrophocial Reflux. NCS has definetly changed my life, and my way of living. I was last hospitalized from 4/11 to 4/14. Having low blood pressure surely doesn't help anything. I am currently on Norpace, Norflex, and Florinef for the NCS. My symptons include dizziness, confusion and weakness and loss of sight and hearing after fainting. My last episode relaly knocked me out and it took about an hour to regaoin my consciousness. I am really interested in learning more bout this. From what I am told it goes away and doesn't last forever and usualy goes away in your mid-thirtys or fourties. I have taken the tilt-test and the stress test.My Cardiac electrophysiologist and his team were the people to invent the tilt test. I am really interested in this and I would love to learn more about it. My Screen name is ***@**** and I would like to talk to anyone with this problem. Thanks again and take care !

by jan, Apr 18, 2000 12:00AM
I am 43 and I have been diagnosed with NCS,too.  I was told that in younger people it usually goes away, but with people my age, they don't know if it will or not.  My dr. talks as if he doesn't expect it to.  Jennifer, to be unconcious for an hr. is uncommon in NCS, have you made your dr. aware of this?  I have only fainted 3 times and they say it wasn't from the NCS because I didn't have any warning.  My symptoms for the NCS were brain fog, dizziness, couldn't concentrate, was very tired all the time - no life.  They believe mine is triggered by IST.  The atenolol has helped me. After a couple of weeks on it I felt totally normal, that only lasted 5 days, but I still feel better than I did.  Now, they think the atenolol isn't controlling my IST well enough, so maybe when they change my med. I will feel even better.  I feel for you young girls having your life so disrupted and I hope it will go away.  Be sure to keep your parents aware of how you feel and then they can keep on the dr.s for you.  Do follow the dr.s orders, too, keeping well hydrated and increasing your salt and taking your meds.  God bless.

by jan, Apr 20, 2000 12:00AM
I am 18 years old and have recently been diagnosed with NCS as well.  However fortunitly I do not have as serious a case as some of those mentioned here.  But I just wanted to encourage you all to keep your head up.  It would be easy to allow this to get you down but we are stronger than that.  God bless you all!

by vicki, Apr 23, 2000 12:00AM
What are the usual symptoms for NCS?  What tests are used to diagnose it?  Thanks for any information.

by jan, May 03, 2000 12:00AM
Vicki, the usual symptoms of neurocardiogenic syncopy are fainting, dizziness, temporary loss of vision, excessive tiredness and the like.  The most common test used to diagnose NCS is the tilt table test.  This test requires the patient to have an IV pumping salt water into the vein and then be strapped onto a table/bed.  The doctor then tilts the table upward in a stand up position.  Oftentimes adreneline is pumped into the patient to produce a mock reaction.

by Kerry Lowery, May 03, 2000 12:00AM
Stephanie,

         I am sorry that your symptoms are so bad! I have it too and often find myself swaying just by standing still too long. I am sorry that you have to make youself stay at home all the time. I have it too and like you I have altered my diet to tons of salt and horrible gross amounts of gatorade. Atleast some of them taste good. They told me I had this just not by the tilt table. I had a seizure and the doctors do not believe me. My blood pressure is always low and I always feel like I never get enough sleep. I am 19 and I have a job and I go to school. The doctors have not given me any medication since my symptoms are not as seviere as yours. I dont think the doctors could make me stay inside my house. I go to school, work and play hockey. Try going to the gym, I have found it helps me out quite a bit. If you would like to get a hold of me I will give you my email address thanks

Kerry

***@****



by DENISE, May 03, 2000 12:00AM
my daughter is 7 years old and had a negitive tilt table test today. she has been diagnosed with ncs. her synthoms include sinus tach. low blood presure chest pain and blue hands and feet. does anyone else have these complaints. she is also on florinef and as of today we added sudafed.