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Neurocardiogenic Syncope (Vasovagal Syndrome)

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
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Avatar universal
A related discussion, NCS Associated symptoms was started.
Helpful - 1
Avatar universal
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.  
Helpful - 1
Avatar universal
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.
Helpful - 1
Avatar universal
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
Helpful - 1
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A related discussion, NCS returning? was started.
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A related discussion, Neurocardiogenic Syndrome was started.
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A related discussion, Self-Diagnosing was started.
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A related discussion, has this stopped anyone from getting their license ? was started.
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A related discussion, Neurocardiogenic Syncope was started.
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Avatar universal
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.  
Helpful - 0
Avatar universal
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: ***@****)
Helpful - 0
Avatar universal
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: ***@****)
Helpful - 0
Avatar universal
Kay
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
Helpful - 0
Avatar universal
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.
Helpful - 0
Avatar universal
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
                        ***@****

Helpful - 0
Avatar universal
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.
Helpful - 0
Avatar universal
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.
Helpful - 0
Avatar universal
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
Helpful - 0
Avatar universal
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
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Avatar universal
boy
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?
Helpful - 0
Avatar universal
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.
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Avatar universal
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.
Helpful - 0
Avatar universal
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.
Helpful - 0
Avatar universal
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.
Helpful - 0

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