I am so sorry for your troubles, and i must say you are quite the husband to continue to help your wife find some peace.
Neuro cardiogenic syncope is kind of a broad term.. Its basically, an unusual drop in blood pressure by a usually unidentified trigger, in an otherwise healthy person that results in fainting. its much more common in young women, and it can happen in any position, although having it happen while sitting or laying down is more rare than standing up.. Here are some other treatment options ive come across..It sounds like your wife has more severe case, taking into consideration the fainting while sitting, and the lack of improvement
In people with frequent or disabling symptoms, treatment with beta-blockers (such as Metoprolol or Atenolol) may help. Other medicines that can be used include Scopolamine, Disopyramide, or Theophylline.
Some patients may need to be on a high salt diet or wear compression stockings. (this is because sometimes during strain or stress, blood pools in the legs and this causes the fainting.
For people with frequent episodes of fainting caused by Slow Heart Rate, they may need a pacemaker.
Vasovagal syncope is usually not a very serious problem and is usually very easily treated. If care is taken, repeat episodes may be avoided.
Heres so more things you can try to decrease symptoms
Stand or sit up slowly.
Thanks for the quick reply! What you mentioned are many things that we have heard before (for the most part) but it is nice to have some reassurance that we are doing all that we can.
You mentioned some new medications, is Toperol (spelling?) included on that list as well? One doc we saw suggested she try that, but our primary care doc dissuaded her from trying it due to potential side-effects. What do you think? Are the others that you mentioned all Beta-blockers?
She does not normally have high blood pressure and according to all of the cardiac tests her heart is "normal". So maybe we will try the high-sodium diet. Would sports drinks (Gatorade, etc) be a good place to start? How else can one safely add additional salt to a diet? Literally just use the salt-shaker on everything?
These "episodes" can occur while sitting, standing or lying down - as I mentioned. Is this still "normal" for a case of
Vasovagal syncope? Could we be facing something more serious do you suppose? What about the newer symptom of left arm numbness. She also mentions the feeling of coolness running through her arm after the episodes - like when you first get an IV put in (she has not IVs in when she feels this).
As for the pacemaker, the Electrophysiologist decided not to implant one. Should we get a second opinion on that?
What is tilt training?
Thanks SO MUCH for your time and willingness to help us finds some answers. We are getting pretty discouraged in our quest for a cure but people like you keep me hopeful. :o) Sorry for all of the questions above. I REALLY appreciate your thoughts!
Ultimately, I suppose this problem with her is not the end of the world - it is just a major inconvenience to the life we want to live together. We are always having to think about "what if you have an episode" and that really limits what we can do together - and more so - what she can do alone (driving, etc). Or goal of course is perfect health with no medications. But we are willing to have a go at any new ideas that can at least give her symptom-free days. Thanks again and have a Blessed Saturday!
A pacemaker seems a bit extreme. Did they mention any heart arrhythmias? Has she had a Holter on when she had an episode? That might be something to think about, or maybe even an implantable loop recorder. It must be very distressing and definitely affects both your lives. Keep us posted!
Thanks for the reply! She was on a Holter monitor during the first two stays in the hospital. She was also on an extended monitor system at home after the first visit for about a week. All of the heart docs claimed things were within the bounds of "normal".
A Pacemaker seems a bit extreme as opposed to what, having her pass out while driving down the road, and possibly killing herself or someone else?
If she is passing out with regularity due to a heart condition, a pacemaker is perfectly applicable given that this fellow's wife likely wants to try and lead a normal life again. (As stated, she is no longer driving due to the possibility of passing out.)
If you are convinced that something maybe is being missed by the current cardiologist, please go and see another one for at least a second opinion. While getting 'reassurance' online may be comforting, it certainly is no substitute for proper medical care.
Remember, doctors are only human, and therefore, are far from flawless. It cannot hurt to get reassured by a proper cardiologist, and just maybe the next one might pick up on something the one you are seeing now is 'missing' or just blindly overlooking. Unfortunately I've seen many instances where doctors get 'tunnel vision' and either are convinced that a patients symptoms are not indicative of a larger problem,when indeed they are, or otherwise simply do not wish to see the truth of test results that are staring at them from the papers in their hands.
My suggestion is to get to another cardiologist ASAP.
Best of luck to you and your wife.
Ummm, I think a pacemaker is a bit extreme, yes, when the diagnosis is not from an arrhythmia. All her cardiac tests were normal he said, and he didn't mention severe heart block or something like that that would warrant a pacemaker. Vasosagal syncope does not warrant a pacemaker unless her heart rate is dangerously low and he didn't state that, and that's why I asked if she had ever had a Holter on during an episode! OBVIOUSLY there is something wrong and he should seek out other opinions. Give me a break.
pacemaker would be warrented if she was experiencing some kind of bradycardia, but since all testing is normal, a pacemaker will not help whatsoever..
Its a common misconception that a pacemaker will "fix" several problems.. It will do nothing for a patient with a normal heart rate, or tachycardia, so in this case, assuming her heart rate is normal durin episodes, a pacemaker would be futile
Not to worry, we can tell that you are a very intelligent and caring husband and only want to help your wife. I know what you mean about House, and I would bet that the CC is the closest you will find. They probably are the cutting edge. Let us know what happens.
the cleveland clinic is known for being the best of the best when it comes to cardiology and heart health.. They are on the forefront of medicine.. Mayo is also another great clinic.. If you are still in search of answers, these are your best options..
Thanks to all for the comments - I didn't mean to cause a stink among board members. Let me first say that by NO MEANS am I taking what is said on this board as medical fact or diagnosis. Rather, I am just looking for new directions to pursue. We certainly will run any new ideas through our primary care doc before trying them.
We are truely blessed with outstanding, so I am happy to suggest any additional testing and/or alternative means of treatment. The popular opinion among "specialists" currently is that this condition is "in her head" which I think is a bunch of garbage. Normal people don't just faint (or nearly faint) with a numb arm every few days.
Anyway, I am happy to answer any questions that any interested parties care to ask. As for this pacemaker business, she was told she had a high AV block. This is why they did the EP study. The study was normal and the pacemaker idea was dismissed. I am just curious if this was a premature decision.
Without divulging too much personal information, does anyone out there know of a good heart doctor in Central Ohio? We are happy to get second, third and fourth opinions! I know this is going to sound COMPLETELY corny, but being a fan of "House", are there doctors out there that are full-time diagnosticians that take the time to look at the entire picture? Any of these in Centeral Ohio? Would this be like at a Cleveland Clinc/Mayo Clinic?
Anain, let me stress that I am not taking any ideas on this forum as medical advice. I am nothing more than a curious and very concerned hasband that is in need of some help in finding a new direction in our search for a cure. I cannot tell you how much I apprecaite everyone's thoughts, comments and prayers. Have a Blessed day!
Have you guys also looked at heart valves? Sometimes, if there is a heart valve issue, everyone of those symptoms is completely plausible. The reason I say that is that I have run this gammet before. I'm 28, have already undergone open heart. While the herbal remedies can help with blood pressure where the magnesium does that, and the vitamin e is a natural type blood thinner she might really work well with the Toprol. Dr. Bajzer at Cleveland Clinic Cardiology is very good. I have read his work in the cardiac journals, and he specializes in coronary intervention and cardiac issues. The tilt table test doesn't sound grueling but is, and there might be some other studies that he might be able to do that haven't been mentioned that give you an idea of how to pursue it. good luck. Liz
I have recently, about two months had the same symptoms - started with shortness of breath - racing pulse rate - 106 - normal for me is 60-75, numbness on left side, now numbness in boths legs and arms, dizzyness, nausiated 24-7, warm sensation from chest up down to my hands in neck and face (feels like a sunburn, but is not one), heart hurting, first sign of racing heart, and dizzy was getting out of tub (jacuzzi tub), all symptoms have gotten more frequent - all symptoms - been to pulmonary doctor ran ultrasound of legs for blood clots, ct of chest, chest xray, all normal - seeing cardiologist - EKG, Stress Test, Echocardiogram, bloodwork 3-times, looking for something - all normal only abnormality is DOPPLER Test - Carodic Arteries are mildly blocked, put on TOPROL - has helped with the racing of the heart, but that is all. Wearing a heart monitor called - event monitor now. SYMPTOMS HAPPEN ANYTIME OF DAY OR NIGHT - WHILE SITTING ON COUCH OR LYING DOWN, WALKING, TALKING, have noticed that being active brings it on quicker - I am a high school fast-pitch coach and very active (athletic) person. Can not do anything active because I feel like I want to pass out. See squigly lines, blue dots, static. Next Dr. is an Endocrineologist - hormone dr. have not gone to neurologist yet. No Diagnosis, but same symptoms. Let me know if you get any answers............................
I am 29yrs old and i just recently found out that i have neurocardiogenic syncope.I seen a neurologist who sent me on four tests, a tilt table test(positive) a EEG(negitive) a holter montier test(some skips of heart beats) and blood tests(negitive) while doing the tilt table test my heart rate went from a 104 to 56 and my blood pressure dropped to 60/30.I would love to know from anyone what medications seem to work for this.I have not yet been on any meds. because i just found out.which I must say I am getting alot of anserwers from this wed page.
My husband as well as you is very worried about this.I have had these problems of passing out for about 10 yrs now but I just chucked it up to thats what i do.It got worse when I started get headaches everytime that i would pass out.Which I also have passed out while sitting,standing, and feeling like I am while lying down.I have three children and they have seen me pleanty of times pass out.My oldest which is 11 knows what to do everytime mom falls down.It is very scary for them to see mom like that and it worries me that they have to see that.
Thank you for allowing me to tell my story.
If yuo can get to Clevland Clinc i strongley sugest yuo do so, do soem researh on the DR. at the clinic. My wife had same symtons as yuor wife, one D. even told her it wa all in h r head, I took her to nasville TN at St, Thmas Hspitital she sawa DR, whitley there and doen soem test and she had a very bad Mitro valve! so i sugest yuo see another caroligest for sure.
get her checked for mitral valve prolapse syndome - i have been trying to post info about this everywhere . not only is it mitral valve prolapse -its a whole syndome of interrelated problems that dont seem to be related at all . its an imbalance of the autonomic nervous system - sysmptoms can include : chest pain,heart palps, acid reflux,ibs, dizziness, migranes, low blood pressure.... and many other things that i cant remember off the top of my head at the moment . only an echocardiagram can find a valve prolapse so please try that and see what comes back from the test .
hope she feels better!
I have a daughter and a sister-in-law with neurocardiogenic syncopy. I share your frustration with this problem. My understanding is that the neuro pathways in the brain are not getting the message to the extremities for vaso constriction, thus causing one to pass out everytime adrenaline is released in the system. Instead of the blood rushing to the vital organs, it pools in the extremities. While it may appear that someone experiencing symptoms is under no stress at the time, the lives we lead in modern society provide us with many occasions for symptoms. It may be the TV show, the drama in the workplace, the traffic jam, the test at school or just the stress of feeling something unusual taking place in ones own body that is not being acknowledged by those around us, or worse yet, the physician who says, "It is all in your head." He would be both right and wrong. One cannot think their way out of it because it is not a matter of hypochondria. It is a matter of fight or flight response gone wrong, and that response begins in the brain. My sister-in-law's doctor in Dallas, Texas is a neuro- electrocardiologist and he is working with his patients to "remap" the brain so that the proper messages can be sent down the pathways. Through a series of exercises, she is getting better without medication. My daughter was prescribed Zoloft "off-book"(for reasons other than depression) by her cardiologist, because a side benefit of the drug is getting the message for vaso constriction to the extremities. She still has problems, and her calves swell enough to visually see that her legs are not getting the memo that this medication is supposed to work. I have not been able to find a doctor up to speed in this new area of specialty, neuro-electrocardiology. We are in Oklahoma City and I am hoping there may be someone out there who knows someone here that could help my daughter. I hope this information is in some way helpful in your quest to help your wife. Perhaps Cleveland Clinic has someone specializing in this area of study. I understand that land breaking strides are being made by similar techniques for restoring visual accuity when the loss is due to neuro transmitters. Keep the faith! The answer is on the way!
i was searching for chestpain causes and i found your post. I hope that you have found the answers you were looking for already but in case you didn't Has she been tested for orthostatic intolerance syndrome? it usually starts off with a tilt test but i'm not sure what else it enquires however i can leave you with a list of symptoms and you can be the judge if perhaps it's worth persuing with a specialist. Thay are as follows; excessive fatigue, intolerance of physical activities (running,jogging etc...) dizziness, nausea, tachycardia,gastroinestinal problems, palpitations, rapid heart beat, tremulusness,weakness mostly in the legs, chest discomfort, shortness of breath, mood swings, migraines and other headaches, visual problem such as blurred vision, tunnel vision, graying out, blacking out, and fainting. Once again i hope that you have found the answers you were so desperately seeking and if not yet i hope you find them soon take care.
I have been dealing with neurocardiogenic syncope for about 4 and a half years now. I have tried so many things to try and get this under control. I laugh when I read medical sites that talk about it and say, "It is not a serious condition." It is pretty serious to me and has totally affected my daily life! You can read about my story at faintinghelp.blogspot.com if you want to see what I've tried. I'm scheduled for a lot of tests next week and I sure hope they find something, but not holding my breath.
Wow....I was doing a search on vasovagal and came upon your original post back from January of '07. I am a 47 year old female and your wife's story/symptoms are identical to mine except that I've never completely passed out. I have also had all of the tests. This began for me mid July of '09 and I've been having "episodes" about twice a month now. It is oddly comforting to know that I am not alone in my somewhat strange medical "malady". I also suffer from IBS and my Dr. started me on 10 mg of Celexa 3 weeks prior to haveing my first "episode/event". I am trying to determine if there is a connection there as well. I am still taking the Celexa as it works SO well for my IBS (not one episode since I started the Celexa).
A Dr. at OSU Ross Heart Hospital where I had my tilt table test,said he has heard of cases where the celexa has been a cause of such events, although it is rare. I have an appt with my primary in 2 weeks to follow up all the cardio & tilt table tests and will discuss the Celexa connection with her then. by the way, I am also in north central Ohio.
Check out the Dysautonomia forum here - it has alot of useful info on POTS, NCS, OI and other autonomic related issues.
I've passed out since I was 9, lightheaded, pre-syncope and other symptoms associated with ANS problems, but just now at age 42 been dx with NCS and OI by my EP before I had an ablation.
I am a 42 year old female and I recently began suffering from the same symptoms... First time was Oct 2009. I had a terrible headache followed by a sudden onset of chest pressure, arm & leg numbness, near fainting spells and then vomiting. The last time was right after Christmas. I have had a lot of tests since then (EKG, Nuclear Stress test, MRI's, Holter and bloodwork) and so far they have found I was severely deficient in vitamin D and nothing else. The vitamin D deficiency correlates with a lot of my symptoms but I am still having the carotid doppler this week. I just wanted to say that it is very reassuring to me that I am not the only one. Both trips to the ER had me thinking I was crazy and they made me feel like I was making it all up and dismissed it as anxiety. Well sure I have anxiety...I felt like I was about to die and I have a 3 year old son to raise! Thank you for sharing and you are in my thoughts and prayers.
I am 39 and fainted a few weeks ago. I was sitting on the couch watching tv(freaked my husband out)-- went to the ER feeling stupid because it didnt seem so serious. I followed up this week with my primary and had to wear a 24 hour holter. All tests up to this point were fine-- EKG and all. The info from he holter show that there is something wrong. I feel healthy. I have only passed out the one time -- they want me to have a pacemaker installed next week or report me to DMV to revoke my driving priviledges. I really do feel good. I am really floored. Any advice?
hello i am 21 yrs old. and i myself are experiencing the same things your wife is! just started on tuesday!! getting a holter monitor on monday to wear for a week or so! they are baffled by mine as well...i cannot get any answers!!!
I am a 42 yr old female... I really think without these forums and sharing of information, a lot of us would be at a total loss, sadly. Last December, got up in the middle of the night, passed out cold - ended up with a concussion. Diagnosis was "Vasovagal Syncope". I didn't really understand it and thought it was a 1 time thing... In Sept 2010, ended up in the ER 3 times. Rapid heart rate, shaking, severe light-headed feeling, very strange sensations in my head, weakness in my limbs, squeezing feeling in my abdomen - felt like my entire body was shutting down and afterward extreme fatigue. All tests were normal... 1 dr was shocked that I was upset when he told me I was "OK". OBVIOUSLY NOT. I can relate to the frustration of this condition being written off as "anxiety". YES, when you feel like you're dying, it's safe to say... anxiety would present itself ! My symptoms also started to change, I began to have numbness and pressure on the left side of my neck and chest and my left arm and hand would tingle. The squeezing feeling in my abdomen no one could explain... After researching on my own, I discovered that the Vagus Nerve extends into the abdomen, it begins at the brain stem and travels down both sides of your neck, around the heart and lungs into the abdomen - all related. My symptoms became worse and worse, not obviously in response to anything... it would literally wake me up at night, happen when I was watching tv, in the car, at restaurants, whenever and often. 1 episode lasted 12 hours and I felt like I was going to have a seizure. I had been taking Xanax off and on because it helped me to get through the episodes without ending up in the ER. After this particular episode, spoke with my doctor as I read that for some SSRI's could help (i.e. Zoloft, Celexa, Prozac). Started taking Celexa and the side effects were horrendous (facial numbness, severe pressure behind eyes, headaches, serious lack of energy or motivation, sexual side effects as well). Continued taking the Celexa because it actually did help with the VV symptoms and as lousy as the side effects were, they were better than the VV episodes !!! Since I started taking Celexa in Oct 2010, I've had only 2 episodes and they were short lived and fairly mild. I have days that I don't feel quite right, my head feels fuzzy and I can just tell it's going to be a down day BUT no real VV issues other than that. I would advise everyone to read as much as you can on this subject - particularly the Vagus Nerve - it really helps to understand the physiology of the diagnosis. Before I educated myself on the subject, I literally thought I was dying - it's terrifying to KNOW that something is going wrong inside your body and no one can really explain why. Thank you all and good luck :-)