Neurocardiogenic Syncope (Vasovagal Syndrome) - Heart Disease

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.

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.

by jennifer in mich, May 04, 2000 12:00AM

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

by Bill In North Augusta, May 08, 2000 12:00AM

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.

by jan, May 09, 2000 12:00AM

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.

by jodie daniels, May 14, 2000 12:00AM

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?

by Paul Tavernier, May 26, 2000 12:00AM

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....

by Dave Tobias, Jun 09, 2000 12:00AM

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 ***@****

by Marjorie Pate, Jul 05, 2000 12:00AM

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

by Julie from Chicago, Jul 10, 2000 12:00AM

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 ***@****

by Julie from Chicago, Jul 10, 2000 12:00AM

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 ***@****

by Carolyn, Jul 14, 2000 12:00AM

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.

by jan, Jul 14, 2000 12:00AM

You are right, the nonchalance could drive you mad and yet my dr. was concerned and urged me to take atenolol. I am tired all the time too and have diffulty falling to sleep ( as a matter of fact I have a call in for sleeping pills). My dr. suggested the possibility of the NCS making me tired, from what I understood, that it wasn't going full scale making me faint, but just making me tired. I have to see my ep every 6 mos., it's been more often than that with tests and such, for the NCS and IST ( mild mvp w/mild mr and mild tr), but none of these are serious. It drives me crazy! Maybe I have to see him 2x a yr. because of the medicine, but because of the nonchalance I'd like to be nonchalant, too and maybe go once a year. Just venting my frustration...

by fiona, Jul 20, 2000 12:00AM

I have suffered from the condition vasovagal syncope from the day I could stand up, however I was only diagnosed 3 years ago (due to dimissive doctors), but I am writing to give hope to all of the people who have written in. The stories I have read are very familiar to me and make me very sad, I too used to let the condition rule my life, I fainted regularly, so I never went into shops with long queues, hot night clubs, I would never put my self in a situation where I would have to stand up, resulting in me doing very little. Anyway after many years, the doctors eventually took notice, I was sent for a tilt test and the same day was told I had to have a pacemaker, because my heart had stopped whilst I was unconscious. The pacemaker scared me more than anything and I didn't want it, but 2 and half years on and I can honestly say it was the best thing I could have had done, I have not gone unconscious once since I had it fitted, my confidence has increased dramatically so now I go shopping and actually go to the bar in pubs instead of sending my mates! I do still get very tired and some days are a constant struggle, but at least I know some stranger won't be picking me up off the pavement, I am also taking beta blockers to try to reduce the other symptons. By the way I'm only 25 and thought "why me?" but the pacemaker really has changed my life for the better and it is nothing to be scared off, it just makes us special. Good luck to everyone who has this complicated condition.

by fiona, Jul 20, 2000 12:00AM

I have suffered from the condition vasovagal syncope from the day I could stand up, however I was only diagnosed 3 years ago (due to dimissive doctors), but I am writing to give hope to all of the people who have written in. The stories I have read are very familiar to me and make me very sad, I too used to let the condition rule my life, I fainted regularly, so I never went into shops with long queues, hot night clubs, I would never put my self in a situation where I would have to stand up, resulting in me doing very little. Anyway after many years, the doctors eventually took notice, I was sent for a tilt test and the same day was told I had to have a pacemaker, because my heart had stopped whilst I was unconscious. The pacemaker scared me more than anything and I didn't want it, but 2 and half years on and I can honestly say it was the best thing I could have had done, I have not gone unconscious once since I had it fitted, my confidence has increased dramatically so now I go shopping and actually go to the bar in pubs instead of sending my mates! I do still get very tired and some days are a constant struggle, but at least I know some stranger won't be picking me up off the pavement, I am also taking beta blockers to try to reduce the other symptons. By the way I'm only 25 and thought "why me?" but the pacemaker really has changed my life for the better and it is nothing to be scared off, it just makes us special. Good luck to everyone who has this complicated condition.

by Diane, Jul 22, 2000 12:00AM

My 18 year old daughter was diagnosed at 13 by using the tilt test. She was out in less than 6 minutes and her heart stopped. They hoped she would "grow out of it" but at 17 and after being admitted to the hospital twice, her cardiologist recommended a pacemaker after another tilt test with results in seconds. We were very worried about this but it has made such a difference in her quality of life! She takes Proamitine for the low blood pressure which also has improved her energy level. The combination of pacemaker and Proamitine lets her lead a normal life. The pacemaker was for "just in case" but she is using it 11% of the time. I highly recommend this treatment and am VERY thankful for our pediatrician and cardiologist.

by Edna, Jul 26, 2000 12:00AM

I am a 47yr old female. Since I was young I have always passed out. All my pass fainting spells have been attributed to stress,
over worked or always on the go. On July 14, 2000 I had the electorphysiological test done and the end result after the test and a severe cardiac episode all cought on the cardiac monitors, my cardialogist stated that a pacemaker and medication will help me. My diagnosis was NCS. I am on 50mg atenolol at bedtime only. My doctor also stated that when I feel I am going to pass out that I need to stop what I am doing, sit and let the pacemake pace my heart and I will feel better in a few minutes. Once my heart starts pacing properly, my blood pressure will return to normal and that naucus feeling will go away. I feel very hopeful with my cardiologist because he is not out to pump me with alot of medication.
My prayers are with you all.

by holly, Jul 27, 2000 12:00AM

I'm 21 and have suffered for at least two years from severe fatigue, occasional light-headedness and headaches, depression and anxiety. I've been able to work full-time until three weeks ago when all the symptoms became overwhelming. Two days ago I did the tilt table test and blacked out in nine minutes, and therefore diagnosed by my cardiologist with NCS. I was under the impression that it was easily treatable with a simple beta blocker which I have started. It's too early to tell whether it is working yet. I had high hopes for it and for the possibility of actually feeling my age instead of feeling like an old man. However, what little research I've done this afternoon is rather discouraging. If anyone has any other information regarding NCS and positive treatment results or any kind of results/affects of the beta blocker medications, please e-mail me at ***@****

Thanks,

Holly

by wanb@naxs.com, Jul 29, 2000 12:00AM

I have had vaso vagal attacks for 18 years. Mine are not as often as many who have posted, but just as scarey and haard to deal with. I have seen a cardiologist x2 and he has discussed a Looper Monitor. This is a device implanted under the skin with a micro recorder that can backtrack up to one minute and will record vitals and symptoms for a specified time when the monitor is pushed. It is to record what is happening physologically when an attack takes place. I am awaiting an app't to discuss this with cardioloigist/surgeon who will perform the procedure. My doctor has discussed the tilt table test, but feels it doesn't tell all that much. He states if we do the test, you pass out - what have we proven? We already know your passing out. He has also discussed a pace maker, but felt this was a little too aggressive to do right up front. He does realize how embarrasing this is, and the anxiety it causes in my life. My episodes have always occurred while I am on the commode, so he feels it is a vaso vagal classic symptom. I have totally passed out and the cold bathroom tiles feel s-o-o-o good when I crash. My Dr. did state if this was happening while I drove, he would have to request my license be revoked and that I not be allowed to drive. Thank God, I have been in a confined situation each time and have not endangered others. My husband is usually the one who carries me from the commode and puts me to bed. The last time I had to miss work the next day because I was so wiped out. I usually come around in 15-20 minutes, but it is really scarey for my family. They are afraid I'm going to die and they will feel guilty the rest of their lives for not insisting I go to the hospital during an episode. The problem with this is that by the time I got there I would have come to and they would just think I was a basket case or whiney anxiety stricken woman.
Have any of you out there heard of, or used a Looper monitor? Thanks for your help and Good bless us ALL!

by Jackie Hancock, Jul 31, 2000 12:00AM

I also had these symptoms and they went on for years. About two years ago I started taking St. John's Wort and have been symptom free.

by Tammy, Aug 01, 2000 12:00AM

hello, i have been diagnosed with vasovagal. i too have fainted
sometimes up to 3min. at a time.  the headache after is too much
to bear at times.  i have good days and bad. i currently take
atenol.  doctor feels that it is not lifethreatning.  but again,
the doctors don't have these spells.  i am 34 and after two years
of trying to pinpoint this syndrome, they finally made the decsion after a tilt-tble test.

by Jessica, Aug 04, 2000 12:00AM

I am also 15, and I was born with NCS, but I didn't start passing out till I was 5. I had a pacemaker implanted when I was 11. But, the doctor put in the wrong pacemaker, and they may or may not have made a hole in my heart. It came up on an echo, but they told me not to worry about it.

by mackenzie, Aug 05, 2000 12:00AM

I am 15 and was diagnosed with NCS a little over a year ago. My symptoms are fainting, dizziness, blue hands and feet and always being tired. I am not on any medication but the no caffeine and less salt diet had been working but over the last 2-3 months it has gotten worseut still livable. I would like to know what has helped people: sodium tablets, beta blockers, etc.

by Dee Heefner Shippensburg,PA, Aug 27, 2000 12:00AM

I was diagnosed a year ago and luckily my episodes weren't as bad as some above. I had my first episode in the shower where I woke on the floor in a pool of blood, I spilt the side of my face open (10 stiches). After many doctors appointments, I finally took the tilt table test and failed. My heart rate does not change during the episode, therefore my doctor did not want to put me on medication he just suggested large doses of salt. I am an extremely healthly person up until now (26 years old when diagnosed). I work out 5 times a week and do not eat red meat. But I also don't like salt. It has been very difficult for me to consume 3-4 grams of salt a day. I was clear of episodes for a year until this past Saturday. My husband & I were driving and I got extremely sick in my stomach and sweating like crazy, next thing you know my husband was screaming at me and shaking me to wake up. My husband pulled into a nearby McDonalds for some french fries(Sodium) but by then I was throwing up and could not keep anything down. Finally, returned home and my stomach calmed enough today that I could get some soup(sodium) in me. I inquired about sodium tablets over a year ago but could not locate them, finally today I purchased a bottle of 100 to take 3 a day to supplement my 3-4 grams a day recommendation. It seems more and more people are being diagnosed with NCS. A lady I work with know a lady that had the get a pacemaker to get her heart regular when she has an episode. To all with NCS, good luck, keep your chin up.

by Morgan Poor, Sep 13, 2000 12:00AM

I am 17 years old and was diagnosed with NCS at the beginning of this year. Fortunatly my symptoms weren't as rough as many of yours. Although I had a few hard core fainting spells, I mainly just suffered from fatigue and dizziness a lot. The worst part of my experience with this was the depression I was feeling. Going from one doctor to the next and getting no answers was really hard. I would stay in my room and read all the time, talking to friends rarely and being a pain with my family. Feeling like a different person that I didn't like and having no answers to what was happening with me left me feeling out of control which even led to a mild eating disorder for a brief time. I am happy to say that I am on medication now and feeling really good again. I wish everyone who is suffering from this the best of luck and I know it's tough, but hang in there. I would love to here if anyone else had an awful time with depression from this. My e-mail address is ***@****, so please write, even if you just want to talk.

by Michelle (Unome427@aol,com), Sep 22, 2000 12:00AM

To Stephanie and everyone whose stories have been told and to those who have yet to tell,
My daughter is 11 years old and has been diagnosed with NCS.After a positive tilt table test where she was out within 4 minutes they determined it was a nerve problem.I understand there are 3 sources that can cause this syncope. She has been having fainting episodes and blackouts for about a year now and they have gotten progressively worse... anywhere from 3 to 8 times a day...the bad ones appear as seizures where her body jerks and she goes into a blank glossy eyed stare, the mildest being where she doesnt lose consciousness
but looses her sight and hearing for about a minute. She seems to have most of her episodes in the morning and she has had to give up playing the flute because she cant play without blackin g out. We have tried the salt tablets and diet and atenolol. After the tilt table her cardiologist determined that the salt and fluid nor the beta blockers will not work for Cassandra (surprise I could have told him that) and now they are trying sudafed ...it sounds almost silly but maybe it will work.
We are just praying that something so simple could be our answer. My sister and my brother both lost their daughters under 12 years of age and this whole thing has scared us to death, but it has been reassureing reading some of your letters that at least this
condition has several treatment options available we just have to be patient and find the right one by trial and error it seems.
The cardiologist says he wants to start out with the mildest therapy first and go from there which I agree with, but I'd like to know if any of you have tried the sudafed and has it worked for anyone else? I hate to see her suffer and it scares us sending her to school not knowing if she is okay or not.You are all in our thoughts and prayers. God bless you.

by Michelle (Unome427@aol,com), Sep 22, 2000 12:00AM

To Stephanie and everyone whose stories have been told and to those who have yet to tell,
My daughter is 11 years old and has been diagnosed with NCS.After a positive tilt table test where she was out within 4 minutes they determined it was a nerve problem.I understand there are 3 sources that can cause this syncope. She has been having fainting episodes and blackouts for about a year now and they have gotten progressively worse... anywhere from 3 to 8 times a day...the bad ones appear as seizures where her body jerks and she goes into a blank glossy eyed stare, the mildest being where she doesnt lose consciousness
but looses her sight and hearing for about a minute. She seems to have most of her episodes in the morning and she has had to give up playing the flute because she cant play without blackin g out. We have tried the salt tablets and diet and atenolol. After the tilt table her cardiologist determined that the salt and fluid nor the beta blockers will not work for Cassandra (surprise I could have told him that) and now they are trying sudafed ...it sounds almost silly but maybe it will work.
We are just praying that something so simple could be our answer. My sister and my brother both lost their daughters under 12 years of age and this whole thing has scared us to death, but it has been reassureing reading some of your letters that at least this
condition has several treatment options available we just have to be patient and find the right one by trial and error it seems.
The cardiologist says he wants to start out with the mildest therapy first and go from there which I agree with, but I'd like to know if any of you have tried the sudafed and has it worked for anyone else? I hate to see her suffer and it scares us sending her to school not knowing if she is okay or not.You are all in our thoughts and prayers. God bless you.

by Kelly in Florida, Sep 26, 2000 12:00AM

I am 18 years old and are suffering with many of the same symptoms which I have read above. To be honest I have never heard of this disease and just stumbled upon it while searching possible causes for my own symptoms. For the past three years I have bounced from doctor to doctor and hospital to hospital complaining of the same symptoms each time, dizziness, severe fatigue, severe heart pulpitations, blurred or loss of vision, temporary loss of hearing, and a constant ringing in my ears. The doctors I visit have a way of treating my symptoms instead of my problem. Two months ago I underwent a glucose tolerence test and tested positive for hypoglycemia (said to be the cause of my symptoms) and mytrovalve prolapse (said to cause the pounding heart). I am taking Paxil now because my doctor believes my problem to be "social anxiety disorder" and he wants to schedule me for a Psychoanalysis because he thinks that this problem could be in my head. I am also on a very strict diet. I have done exactly what the doctors have said and feel no better. I am constantly missing school, havn't driven in months, and almost never leave the comforts of my home. I have a hard time keeping up at work and presently have my two week notice in. In two days I have yet another appointment with a new doctor, and I am going to tell him that I believe it could possible be NCS (thanks to all of your replies) and see what he thinks. A couple of months ago I decided that I can no longer let this disease run my life but I still need to find the problem in order to find the cure. Even if NCS is not the problem, at least you all have given me hope that there is help out there for me and that this problem is not in my head. God bless you all.

by Lauren, Sep 27, 2000 12:00AM

I'm so glad to have found this sounding board. I'm 32 and was diagnosed with NCS this past year. I'm doing well and on Zoloft for lowering my heart rate. My pressure has done well, but I have to be very conscientious regarding my fluid intake because I dehydrate easily. This condition also has affected my work, and a lot of times some people don't undertand what we are going through, and we need the time to take a deep breath and elevate our feet until that feeling passes--I'm sure everyone with NCS knows the feeling of dread before syncope occurs. My husband however, has been very loving, understanding, and supportive although it concerns him even when I look the least bit pale. I wasn't aware that there were the other symptoms of insomnia and headache, along with the depression. Please hang in there, guys. I've learned to use every opportunity in life and not let this take over. God bless.

by boy, Sep 30, 2000 12:00AM

Sometimes when I stand up (or when my body moves) I sometimes lose control of my body, as in I find it hard to direct my body for only a few seconds then I'm alright again. I'm only 13 and I don't take coffee...but sometimes I take alot of chocolate

Do I have syncope?

by M elissa Griffin, Oct 02, 2000 12:00AM

Hello everyone,
I have jusy been diagnosed with neurocardiogenic syncope after spending a week in the hospital. I am 23 years old, a nurse, and passed out at work on the job. Luckily because of being a nurse and an employee I got good treatment. I have tested positive on 2 tilt table tests and am now on proamitine, norpce, and florinef. I passed out during the tilt table test 13 and 22 seconds after geeting the Isoprel to increase my heartrate. I am on a high salt diet and bedrest until they get the meds right, but they were kind enough to let me go home home with 24 hour supervision. I can not drive or go to work which definiety hinders my life. I was very healthly until my first episode this week, working out 3-5 times per week and eating healthy. The doctors have no answers to waht causes this. I just wanted to share my story with you all and wish you good luck. I am still not sure how this will effect my life, I still have a long scary road ahead of me. My e-mail address is ***@**** for anyone interested.
Thanks

by Coreen, Oct 02, 2000 12:00AM

Hello,
I am 22 and was diagnosed with NCS when I was 17, after 3 years of bouncing from clueless specialist to specialist. I don't know any one else who has this, and reading this forum brings tears to my eyes becaue I'm happy and touched to find others. It's validating. No one else ever has a clue what you are talking about. My Doctors are wonderful. Dr. Blair Grubb (MCO) diagnosed me and sees me periodicly. My PCP is Dr. Kathryn Boehm. She has NCS too so she totally understands us. They are both located in Toledo Ohio. If some one is unhappy with their doc, or looking for clues, I totally recomend them. KIT

by Robin, Oct 03, 2000 12:00AM

I am a 35 year old single mom with two kids. I am also a return full-time college student. I was diagnosed with NCS last week from the tilt table test, and spent an entire week in the hospital. I have had many of the symptoms spoken of, migrains, fainting, dizziness, sleeplessness, extreme exhaustion and confusion. My doctor has put me on the atenolol as well, but I really don't see much of a difference yet. I was told a change in diet wouldn't help, but upon reading, I believe I will try some changes. I am just starting a new life for myself and my children, and felt cheated by the sudden illness. It has helped to hear that others have had it as well. I am continuing to go to school with a wheelchair and a cot in the back of the room they provided. I have found people to be very helpful and understanding, but I must confess medical professionals have been very lax and difficult at times. There were times I thought I was imagining everything, but now I know I am not. My prayers go out to you all. I will take life one day at a time now, and cherish what I get from it. That is all any of us can do.

Take care and God bless you all.

by Jennie, Oct 05, 2000 12:00AM

I found out that I had NCS the end of July. I have been on lots of different medication and none of it seems to be working. I also have been eating lots of salt and drinking lots of gatorade. I was put in the hospital the end of Aug. when I passed out at work and was coming in and out. I'm 20years old and am supposed to be away at college but I had to drop out for this semester because I pass out almost everyday. The doctors are clueless as what to do. Any advice would be greatly appreciated.

by Donna Braswell, Oct 09, 2000 12:00AM

My name is Donna Braswell and i am 24 years old and a singal mother of a 2 year old little girl.I feel like i can't do anything. Like can't spend time one on one with my baby because i can't be left alone for a long period of time.There are so many other things i can't do like drive, swim,and so on i am sure you all know that already. I really don't know that much about NCS. I am willing to learn more if anone can help me it would be greatly appreciated.

                             Thanks
                          Donna Braswell
                        ***@****

by Christine, Oct 11, 2000 12:00AM

I've had vaso-vagal attacks since I was 14, although I didn't get a diagnosis until about five years ago. I'm 48 now. Pain of some kind always triggers the attack. Usually severe stomach cramps set it off, but I suffer from fibromyalgia and occasionally the pain from that has set me off. First I feel vicious pins and needles virtually throughout my body, then, within seconds, my ears start to sing. I go incredibly hot; the sweat pours from me, and I look very pale. I then get flashes of black before passing out completely.
I have always laid myself down on the ground, though, as soon as I've felt the pins and needles, so that I wouldn't fall heavily. I can be unconscious for anything between two minutes and almost an hour.
Does anyone else have the same or similar lead up to the attack? None of your messages mention pins and needles - which I understand is the capilliaries tightening, and I think only one of you mentions being very hot.
Are many of you unconscious for up to an hour? Does this sound dangerous to you? My doctor doesn't seem to be taking it at all seriously.

by Kay, Oct 16, 2000 12:00AM

I was diagnosed with having vasovagal attacks just last week, and after the dr told me what I have been suffering for for the last 17 years (I am now 32) that was it and he said that there was nothing I could do about it. He didn't even offer m,e what you are all calling a "tilt test" is that correct ? What should I do about it ? My GP's (Doctors) are all saying that they cannot do anything and because I live here in England perhaps they haven't progressed this far yet . Any ideas ?
The Consultant that I finally went to see said that because I only have them four /five times a year it wasn't worth really worrying about...... does anyone know :-
1. is it hereditery (I have two daughters)
2. is it preventable ?
3. will it damage me in any way if I just leave it (like the doctors have advised )
4. Can I prevent it
5. What causes it ? Stress ? Fear ? Please e'mail me I am so desperate for any help at all : ***@**** Thank you

by Mike, Oct 24, 2000 12:00AM

I'm 44 years old and have been diagnosed with Syncope for the last 20 years. Before that at age 12 I was diagnosed with Hypo-glycimia(sp?) due to my terrible eating habits as a kid.
As I got older my original syncope symptoms were getting up too fast at night to go to the bathroom. My fainting spells lasted about 30 to 60 seconds. However now I get up slower and do not have that problem anymore. I have, in the last 10 years, developed new symptoms where I faint. This only happens at night after I go to bed, I will feel a pressure in my bowels that makes me feel as if I have to go to the bathroom. After getting up to go the pressure may increase to a mild pain and be very uncomfortable. If I can not move the pressure by a bowel movement I will most likely faint. I experience this about 3-4 times a year. I'm getting ready for another round of test. Previous test only showed borderline Hypo-Glycimia and a low B12 count. I now take B12 shots once a month for that. I have read though this forum and do not see anyone with these symptoms.
(E-Mail: ***@****)

by Mike, Oct 24, 2000 12:00AM

I'm 44 years old and have been diagnosed with Syncope for the last 20 years. Before that at age 12 I was diagnosed with Hypo-glycimia(sp?) due to my terrible eating habits as a kid.
As I got older my original syncope symptoms were getting up too fast at night to go to the bathroom. My fainting spells lasted about 30 to 60 seconds. However now I get up slower and do not have that problem anymore. I have, in the last 10 years, developed new symptoms where I faint. This only happens at night after I go to bed, I will feel a pressure in my bowels that makes me feel as if I have to go to the bathroom. After getting up to go the pressure may increase to a mild pain and be very uncomfortable. If I can not move the pressure by a bowel movement I will most likely faint. I experience this about 3-4 times a year. I'm getting ready for another round of test. Previous test only showed borderline Hypo-Glycimia and a low B12 count. I now take B12 shots once a month for that. I have read though this forum and do not see anyone with these symptoms.
(E-Mail: ***@****)

by Mike, Nov 21, 2000 12:00AM

I have had NCS for about 4 years (I am 44).  When it was first diagnosed my doctor told me "you will feel like you are dying but you are not, so you just need to get used to it".  I should have known then that I was in trouble.  I went to see a neurologist today who sat me down and said I need to seek help from a psychiatrist. Because "no one has problems like I am having from NCS".  Obviously I have mental problems.  I have read all your postings and feel for what you are going through, because I have been there.  If you don't mind I would like to post my symptoms and see if any of you have the same before, during or after an attack.
Dizziness.
Cold sweats.
Headaches in the left side of my head.
Vision goes blurry in the left eye.
Chest pains.
Pains down the left arm.
Sick to my stomach.
Ringing in the ears.
Tunnel vision.
Dry Heaves.
Legs go numb.
Arms go numb.
Heart pounds.
Muscles will shake.
Legs will collapse.
I then pass out.
I am tired all the time, weak, unsteady, and fall easily.  My hands shake a lot, and my feet and hands are cold all the time.
Some attacks I recover from in 30 minutes or so (can get up and walk around again) but sometimes the effects last 24 hours or more.  The attacks come and go.  I can have no problem for a full week and then I get them three times a day for 3 months. Any heavy physical exertion brings on an attack very quickly.

I am on Metoprolol (beta-blocker) and Florinef.  The symptoms are less frequent and less severe on these meds but they do not stop them.  I am also now on Paxil and Alprazolam (I guess to help with my mental illness).  Well thanks for reading all of this,  I needed to vent after todays Dr. visit.

by Mike44, Nov 21, 2000 12:00AM

I have had NCS for about 4 years (I am 44).  When it was first diagnosed my doctor told me "you will feel like you are dying but you are not, so you just need to get used to it".  I should have known then that I was in trouble.  I went to see a neurologist today who sat me down and said I need to seek help from a psychiatrist. Because "no one has problems like I am having from NCS".  Obviously I have mental problems.  I have read all your postings and feel for what you are going through, because I have been there.  If you don't mind I would like to post my symptoms and see if any of you have the same before, during or after an attack.
Dizziness.
Cold sweats.
Headaches in the left side of my head.
Vision goes blurry in the left eye.
Chest pains.
Pains down the left arm.
Sick to my stomach.
Ringing in the ears.
Tunnel vision.
Dry Heaves.
Legs go numb.
Arms go numb.
Heart pounds.
Muscles will shake.
Legs will collapse.
I then pass out.
I am tired all the time, weak, unsteady, and fall easily.  My hands shake a lot, and my feet and hands are cold all the time.
Some attacks I recover from in 30 minutes or so (can get up and walk around again) but sometimes the effects last 24 hours or more.  The attacks come and go.  I can have no problem for a full week and then I get them three times a day for 3 months. Any heavy physical exertion brings on an attack very quickly.

I am on Metoprolol (beta-blocker) and Florinef.  The symptoms are less frequent and less severe on these meds but they do not stop them.  I am also now on Paxil and Alprazolam (I guess to help with my mental illness).  Well thanks for reading all of this,  I needed to vent after todays Dr. visit.

by Dragonlovercali, Feb 12, 2008 05:13AM

A related discussion, Neurocardiogenic Syncope was started.

by monika101, Aug 30, 2008 08:42PM

A related discussion, has this stopped anyone from getting their license ? was started.

by aeo033, Sep 05, 2008 03:18AM

A related discussion, Self-Diagnosing was started.



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