Syncope, arm numbness, chest pain, shortness of breath, dizziness, normal BP

[PrayingForAnswers]

As my ID indicates, I am at wits end with researching my wife's condition.  I pray that a fresh pair of eyes sees this post and can offer us some insight.

Background:

My wife, caucasian, 27, was admitted to the hospital in March 2003 after fainting while sitting with me on the couch (watching TV).  Her BP was a bit high for her.  She had many tests:  EP study, EKG, chest MRI, Stress Echo.  Everything "normal". She failed the tilt-table.  Diagnosis:  Neuro cardiogenic syncope.  Treatment:  Celexa, 20mg daily.  NO pacemaker implanted.

NOTE:  This does not seem to be stress related.  Also, this happens when sitting, standing and lying down.

Back in the hospital a few weeks later.  Added 10mg Celexa and Florinef (spelling?) to raise BP.

Symptoms:

She sporadically has "episodes" where she gets VERY dizzy, has chest pain (described as "cramping"), varying pulse, shortness of breath, fainting (not always), nausea, feeling of coldness, tingling in all four limbs, and just recently - lasting numbness in her left arm.

We were back to the hospital again last weekend due to the numbness and another fainting spell.  Neurologist ran CAT Scan and head MRI (both normal).  Heart doc dismissed all symptoms as "normal".

We are currently seeing a herbal doc that has her on mega doses of C, E, B-100, Magnesium, Omega-3, calcium and a daily multi.

This illness has not been terribly debilitating.  However, she cannot drive (passes out) and she has been increasingly having more severe "episodes".  I CANNOT STAND PEOPLE TELLING US THIS IS NORMAL!  Thanks for your help!!!

[Mccracken1]

I also have nuerocardiogenics syncope
I have very bad chest pains dizzy all the time extremely tiered no energy. My blood pressure is low all the time and I can't stand for long or I fell a episode trying to come on.i just seen a heart doctor I have to wear a halter heart monitor have a stress test and echocardiogram done.let me tell u it could be her medicine?
I have tried 4 different medications nothing has worked for me.hope she gets it under control I know how she feels it sucks ur life away.

[Mccracken1]

I also gained weight drinking Gatorade so my doc said drink water with nuun hydration it has 360 mg of sodium
Also moderate compression stockings
And a low carb diet

[Meg5_6]

What about angina proctitis? Have they done a stress test on her?

[Meg5_6]

Pectoris**

[salatchi]

This is Neurocardiogenic Syncope.(NCS)
I have similar symptoms except I get presyncope symptoms, so I will lie down and  have not fainted.I have these from 1983 - 32 yrs. No doctors could diagnose. Everytime they will test my heart thoroughly and will say it is anxiety or panic disorder. Last month I browsed and got to know about dysautonomia. I insisted the dr to test for this and now NCS diagnoised.
Tilt Table Test and other autonomic detection tests were done.

very hot/cold intolerance is one of the symptoms  that is why she is having the numbness. I also have.
I feel presyncope symptoms while sitting, lying also. Fortunately I will be alright when I lye for an hour.
Discomforts are mostly in the morning hours till 2pm.

She will be alright. Problem is Drs not thinking beyond heart. I also underwent all tests for heart including event monitoring several times in my life.
My discomforts --
Most often -- short of breath, discomfort in - chest region, stomach, back,
chest anxiety, palpitation, chest pressing, severe short of breath etc.
giddy, blackout, tired, sleepy, eyes blurred, have to sleep around 11 am and after lunch.
pain - neck, back, low back.
while having the episode stomach discomfort, loose motion - not digested food.
Migraine - triggered when exposed to hot sun or disrupt in eating, sleeping schedule, noise/crowd.
Exhausted, giddy after hot water bath.
numbness of palms when exposed to cold. Feet/leg numbness when kept in same position.  Forgetfulness, feeling out of place,  and more discomforts.

[Linnyw50]

I went through the same.  There is a test called a TEE, Transesophageal Echocardiography, she may have a valve problem.  I did and they did not see it on the angiograms or any other test until they performed a TEE.

[lboogie801]

Has anyone considered neuropathy? My wife is experiencing the same symptoms except the fainting about every 2 months.

[lucrativeanomaly]

I am 27 and started having fainting spells in January of this year after having given birth to my son in November last year.  I would have a strange dreamy-de ja vu feeling, followed by intense anxiety and the next thing I knew, I'd be picking myself up off the floor trying to piece together what happened.  I totaled a car before any doctors would take my symptoms seriously.  I was on a heart monitor for a couple of weeks and after it detected multiple episodes, I was referred to a cardiologist.  Apparently, my heart just stops beating for up to 10 seconds a pop, which was causing the syncope.  I had a medtronic pacemaker implanted in June and while I have had episodes of feeling the faint dreamy feeling, anxiety, and tingling in the fingertips on my left hand, I have not fainted.  I might have an unresolved low bp issue, but the pacer is what keeps me from losing consciousness and the surgery to have it implanted was not bad at all.  You and your wife should look into heart monitoring with an event recorder style device that can be ordered by your doc.

[strugglinginTX]

I am in a very similar situation. Having been diagnosed as having anxiety, I have experienced most of what you have had and many more symptoms. My 'episodes" started almost 4 years ago. I had my very first panic attack and was scared out of my mind that I was going to die. When told it was a panic attack, I didn't believe it. I spent months suffering!! I was nauseous, lightheaded, dizzy, tired. I had chest pains, vision problems, headaches, numbness and tingling in my arms and legs, shaky hands and much more. I went from thinking I had a brain tumor, heart condition, to some type of cancer, M.S. and a number of other diseases and problems. It was exhausting and terrifying. I had cat scans, MRI's, blood work, and an EKG done throughout multiple visits to the dr. and E.R. -- all results were normal. Then one Thursday I had had a somewhat "normal" day, with few symptoms -- until I watched Grey's Anatomy!! I realized then that it may actually be anxiety and in my head (as many had told me). I was prescribed Celexa, worked my way up to 40mg and did GREAT for over 2 years. I was "normal!!" Struggling again now. Changed meds and am seeing a therapist. Hoping to get this under control again.

[ouch2much]

Thank you for your post. I am a 40 year old female. I spent my 40th birthday in the hospital and I was there for 3 days. I  wore a heart monitor, had several EKG's, stress tests, stress test with the die, Echocardiogram, chest xrays, blood work, etc. I was told that i have anxiety. I DON'T BELIEVE IT!!! As we speak I am having episodes including chest pain, pain on the left side of my neck, left arm pain, weakeness in my left arm, wrists and hands, arm and hand is cold, left jaw pain, teeth hurt and metal taste in my mouth. I have been back and forth to the E.R. with no answers. I was given a  prescription for Prozac and I am afraid to take it because of the listed side effects. When these episodes occur (they are becoming more frequent even when i drive) i am not stressed, anxious or nervous. I plan to check into the device you mentioned in your last blog. The only way i can get through the night sometimes is reading the blogs knowing that there are others  who are going through it too. Thanks again.

[ouch2much]

Thank you for your post. I am a 40 year old female. I spent my 40th birthday in the hospital and I was there for 3 days. I  wore a heart monitor, had several EKG's, stress tests, stress test with the die, Echocardiogram, chest xrays, blood work, etc. I was told that i have anxiety. I DON'T BELIEVE IT!!! As we speak I am having episodes including chest pain, pain on the left side of my neck, left arm pain, weakeness in my left arm, wrists and hands, arm and hand is cold, left jaw pain, teeth hurt and metal taste in my mouth. I have been back and forth to the E.R. with no answers. I was given a  prescription for Prozac and I am afraid to take it because of the listed side effects. When these episodes occur (they are becoming more frequent even when i drive) i am not stressed, anxious or nervous. I plan to check into the device you mentioned in your last blog. The only way i can get through the night sometimes is reading the blogs knowing that there are others  who are going through it too. Thanks again.

[worriedmomcna]

i understand what you are feeling my 15 son is doing the same thing we have made 4 trips to the ER and he him self is on a montor his BP durning one epssoid peek at 189/111 and his heart rate was 186 and he was just sitting down all the ER doctors say there panic attcks but his doctor says his stats are to high to be just a panic attack now there talking maybe were lookig for a tumor in the adrenal gland see what your doctor thinks about that on your wife

[PrayingForAnswers]

I have to say that I am overwhelmed with gratitude for everyone that took time to post their thoughts and experiences on this issue.  I honestly had no idea it was so pervasive.  I did want to share some updated info on our situation in the hopes that it might help someone out there.
After countless hospital ICU stays, tests, specialists (even at the Cleveland clinic) we eventually found Dr. Blair Grubb at the University of Toledo Medical Center.  I cannot say enough good about this man.  He is a syncope specialist.  Now it took us over a year to get into see him, but once we did, he placed us squarely on the path to a “solution”.
Dr Grubb has been running trials with Biotronik.  They have a two-lead pacemaker that effectively measures blood pressure and kicks in to compensate for low pressure.  This little device gave my wife her life back.
The pacer is able to catch the fall in blood pressure and pace the heart to compensate.  *Most* of the time, this catch is made before the syncopal episode causes a blackout.  We have to tweak the settings with a Biotronik tech to find the sweet spot for my wife.  I will say she does still have a very occasional “break-through” episode – but those are few and far between.  To give you some idea- pre-pacer she was going completely out 4-6 times per day.  After the pacer it is maybe once per month – if that.
I don’t want to give false hope to anyone.  But this is what is working for my wife. And I said “solution” earlier because this is not a cure for the root issue.  She is also taking Prozac for the RSSI attributes of that drug.  Between that and the pacer, this condition has become very manageable.
So we went from (in my first post) she couldn’t work, drive, have kids, etc.  To now where she can do all of that.  We have a 16-month old and another on the way in Feb.
Again, thanks to everyone for sharing your stories.  If we can be of any help to anyway, please let me know.  We are perfectly willing to share our research and her story if that would be of comfort to you or your loved ones.  Thanks!

[hopeforacure]

You should look at Vanderbilt or the Cleveland Clinic. They both have good info.. Defnitely stay away from alcohol and limit caffiene intake as they both dehydrate you. Stay hydrated. Up your sodium intake unless it is going to kill you.. Get up and down from a seated position slowly after sitting up for at least 15 seconds. If you feel an episode coming on take your fingers from each hand and clasp them together pulling them in the opposite direction in a horizontal direction as hard as you can, also cross your legs and squeeze your thighs, butt, and calves together as hard as you can. This will help push the blood that is pooling in your legs up.
Of course if you feel it coming on super strong just lie down and put your legs up in the air. Looks silly but so what so does everyone else with medical issues !!! I'm also a H.S fastpitch coach so I know where your coming from. I have the scars on my skull and lingering effects of a concussion to prove this disease is no laughing matter.. Good Luck :)

[klm0624]

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 :-)

[ladyjojo88]

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!!!

[cindyandbrad]

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?  

[Lebugg]

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.

[Mom2four85]

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.

[vasovagaltoo]

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.  

[faintinghelp]

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.

[c2276]

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.

[PrayingMom85]

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!

[Kerry777]

hi
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!
                                                        Kerry

[Pointman]

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.

pointman

[AMYCHRIS28]

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.