Neurocardiogenic Syncope (Vasovagal Syndrome)

[Stephanie Lee]

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

[CCF CARDIO MD - DLB]

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.

[Greg]

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.

[Lissan]

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.

[Mommydee]

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

[Stephanie Lee]

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.

[Cindy]

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.

[Jennifer Lichtle]

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 !

[jan]

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.

[jan]

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!

[vicki]

What are the usual symptoms for NCS?  What tests are used to diagnose it?  Thanks for any information.

[jan]

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.

[Kerry Lowery]

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
***@****

[DENISE]

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.

[DENISE]

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.

[jennifer in mich]

I to have been reasently been given this diagnosis after a positive tilt table,and a cardic cath, I have also had a positive MI and sever asthma. im at my wits end i'm only        31 and getting little support from my doctors

[Bill In North Augusta]

My wife who is 33 was just admitted to the hospital this evening due to having fainted three times today. Her last fainting episode occurred in the hospital and they informed her that her heart had stopped beating for about 20 seconds. She has fainted on occasions in the past which usually included a seizure, but each case it was triggered by some extreme pain (post dental surgery for example). Today there was no pain involved. The Cardiologist informed us that he believes she has NCS. He is recommending a pacemaker be installed stating that this will prevent her heart from slowing down to such a slow rate. Does this sound a little too aggressive to anyone here? Also, has anyone else had this proposed by their doctor? PLEASE POST A REPLY SOON...HE WANTS TO INSTALL THE PACEMAKER TOMORROW.

Also, what is the connection, if any, between "head pounding migranes" (borrowed Stephanie's term) and NCS. My wife has suffered with them since she was about Stephanie's age (e.g., 15)and no one has been able to determine what causes them.  Interesting note: she was completely migrane free during both her pregnancy's which I thought would provide the key to a solution, but her doctor hasn't been able to establish a link.

[jan]

Dear Bill,
The only education I have is from this website and from what I have read the pacemaker sounds like the right way to go.  Let us know how your wife makes out.  
About the migraines... My niece has been hospitalized more than once for migraines.  She was in a reknown headache clinic somewhere in the Chicago area and they tried everything, to no avail.  With her 1st pregnancy they disappeared, however during her current pregnancy that is not the case.  Just last week she had to go the ER for an IV.
Good luck and God bless.

[jodie daniels]

My daughter is 13 yrs old, and has been in and out of the hospital for years!  Her main complaints are always being dog tired, and dehydrated!  2 years ago they decided that she had a bradycardia along with a low blood pressure.  She has now developed vasovagal syndrome.  SHe has passed out 3 times in the last 3 weeks and injured herself.  1 broken arm, a few scratches and a major concussion!  I am at my wit's end,  I do not now where else to turn.  SHe feels so bad, and I believe she is depressed.  I would be.  SHe is taking sodium tablets, and midodrine(vasopressor).  SHe did not tolerate the florinef of beta blockers.  Does anyone else have any recommendations- besides the pacemaker?

[Paul Tavernier]

I have exactly the same symptoms as you have (had).  I was admitted to the Georgetown Medical Center on May 6th and released on May 24th.  Initially , the doctors thought I was having seizures caused by coughing.  I went through the entire neuro testing (MRI,ECHO,EKG,EEG, etc.)  So far I've passed with a clean bill of health and relesed.  My problem is that I still have a fainting spell at least once a night.  They are not as intense as when they first started because at the start my eyes were hemmoranging and I had extreme pain.  Ray, If you can give me any advice it certainly would be welcomed. Please list any medications you are taking. Thanks....

[Dave Tobias]

I've had NCS for 4 or 5 years.I was refered to a cardiologist who specializes in tilttable tests.He put me on a betablocker called toprol.while i've had minor symptoms,i've been virtually "spell-free" since.I also went to a support group at the beginning for panic attacks(which the symptoms are really identical) and it really helped knowing what to expect and being able to relate to people in the same boat.try it youll like it.good luck to us all.anyone wanting to relate to a veteran ncs patient is welcome to email me at ***@****

[Marjorie Pate]

Stephanie Lee,

Hang in there, it will get better.  I am 34 and recently diagnosed with NCS after a Tilt table test.  I have been struggling with this for 10 years without a diagnosis.  Emergency room Dr.s thought I was hyperventalating and no one seemed to take it seriously until I went to a Cardiologist.
Thank God for Cardiologists...

I also suffered from migraines from the time I was 17 and my fainting actually started when I was 14.  I don't know if it was related but you might try what my Dr. gave me for a hormonal imbalance (Lo-Ovral).  This worked for a number of years until I was in my twenties.  Now I stay hydrated and drink lots of water and eat lots of salt.  So far so good.

Sincerely,

Marjorie

[Julie from Chicago]

Hi everyone.  I was diagnosed with NCS 9 years ago, when I was 17.  If it makes any of you young girls feel better, sometimes it just seems to go away for a few months.  There will be periods of normalcy in your life, so enjoy them when they come.  I seem to go in cycles, fine for a few months to a year, and then bam - fainting 3 times a day for months at a time.  What I'm on now seems to wohelp - Toprol in combination with Midodrine (also known as Proamitine).  I haven't fainted in 108 days.

Bill, my doctor did suggest a pacemaker when they were at their wits end.  But he felt it very aggressive, and was not enthusiastic about it due to my age (25 at the time).  I passed on it.  I hope everything worked out with your wife.

To the girl that was out for an almost an hour, it is important to get medical help if you're not coming out of it quickly.  It has taken me over 45 minutes to totally "come back," but my normal experience is about 10-20 minutes.  My longest time out was the 45 minutes, after a tilt-table.  No IV and out in less than 30 seconds.

I would also suggest a Medic Alert bracelet to anyone with NCS.  I have passed out in public places before without friends or family around.  It really helps others to stay calm when they can call and know what's going on.

I do have one question - has anyone heard of NCS and pregnancy.  I'd like to start a family, but I have never heard of anyone with NCS having a baby.

If anyone would like to contact me, my email is ***@****

[Julie from Chicago]

Hi everyone.  I was diagnosed with NCS 9 years ago, when I was 17.  If it makes any of you young girls feel better, sometimes it just seems to go away for a few months.  There will be periods of normalcy in your life, so enjoy them when they come.  I seem to go in cycles, fine for a few months to a year, and then bam - fainting 3 times a day for months at a time.  What I'm on now seems to wohelp - Toprol in combination with Midodrine (also known as Proamitine).  I haven't fainted in 108 days.

Bill, my doctor did suggest a pacemaker when they were at their wits end.  But he felt it very aggressive, and was not enthusiastic about it due to my age (25 at the time).  I passed on it.  I hope everything worked out with your wife.

To the girl that was out for an almost an hour, it is important to get medical help if you're not coming out of it quickly.  It has taken me over 45 minutes to totally "come back," but my normal experience is about 10-20 minutes.  My longest time out was the 45 minutes, after a tilt-table.  No IV and out in less than 30 seconds.

I would also suggest a Medic Alert bracelet to anyone with NCS.  I have passed out in public places before without friends or family around.  It really helps others to stay calm when they can call and know what's going on.

I do have one question - has anyone heard of NCS and pregnancy.  I'd like to start a family, but I have never heard of anyone with NCS having a baby.

If anyone would like to contact me, my email is ***@****

[Carolyn]

I was diagnosed with NCS in 1997 when I was 35.  I believe that I probably have had this since I was about 10, but no one knew about this "condition" as my doctor calls it.  When I was younger, I would pass out whenever I played sports or was in the sun or heat too long.  The doctors would tell my mom to make me carry salt tablets with me.  In 1997, I passed out and hit a parked car. I had my son in the car with me.  My doctor claims that this "condition" is not serious and I should really not worry about it.  I had the tilt test done in 1997 and was prescribed Toprol.  It seems to me that either the doctors' really don't know too much about NCS or don't realize the impact that this has on peoples lives.  When I went to see the doctor this week, he didn't even bother to close the door.  I am also very tired all of the time.  Yet, I can not fall asleep by myself and take Benadryl to sleep.  None of my doctors think this is abnornal or is related to NCS.  However, after reading the postings, I am beginning to think that this is all related.  My doctor did say that it was my body's way of handling stress.