Neurocardiogenic Syncope

[Leah77]

I was recently diagnosed with neurocardiogenic syncope.

I am a 24-year-old female. Late last summer, I started experiencing a number of symptoms: extreme fatigue for months at a time (in fact, even during a "good" period, the fatigue never went away); muscle pain in my arms, legs, and sometimes neck, varying in terms of position, but lasting for months; "shooting" pains in my arms, legs, and back/neck (sometimes when I would turn my neck down and to the right, there would be a shock-like pain going down through my arms and legs from my neck and back); numbness in my legs and arms; weakness in my legs and arms; dizziness which would last about an hour; occassional vertigo; fluctuating hearing loss at all times; fluctuating vision loss, usually connected with the dizziness; lightheadedness which again lasted about an hour at the worst, and would gradually subside over a number of hours; tremors in my hands and sometimes arms; and, problems with balance. I will still get dizzy whether lying, sitting, or standing.

Then, for about a month and a half, all the symptoms went away, except for the fatigue, an occassional dizzness/lightheadedness, and some pain in my arms or legs.

I had EMG, EEG done - both negative. I had a tilt-table test done - back borderline positive - did not pass out, but lost ability to stand, lost vision, lost most hearing, confusion, threw up.

Now all symptoms are back, but worse than before.

Just started Zoloft, 25/mg per day.

1 - Are these typical symptoms?
2- How long will med. typipc. take to work?
3 - What is prognosis of NCS?

[Sassyprincess]

Hello All,

I recently have been diagnosed with Neurocardiogenic Syncope(2 months ago). I had a positive tilt table test and my blood pressure went down to 80/30. Before I go further let me start from the beginning...Two years ago, I started having dizzy spells and passing out. Before this happened, I would get shaky, sweaty, and go down. I started seeing an endocrinologist and was diagnosed with insulin resistance( my body produces way to much insulin---a 4 hour Glucose tolorance test when the range was 2-24...mine was 235...when the intial test was done my insulin was normal). I was also diagnosied with PCOS..which I believe I don't have. My doctor priscribed Glucaphage and i changed my diet. I started out being 105 pounds and went to 145 ( i am 5 feet). I am now 137 pounds:( The glu. was not doing anything and my doc changed me to precose..needless to say this made me gassy and i couldn't stop using the bathroom. During these 2 years i continued to get sick and pass out. Finally 2 months ago my doc went on a whim and sent me to a Card.....and here i am today. I am now taking Pindolol(2 months) and zoloft(1 month). I dont pass out as much as before but I am able to control it a little better.  It has been a long two years and I almost lost my mind:):) Because it's been so long I deal better:) At first i did not want to take the zoloft because I am not depressed...My doc told me because i have been dealing with this for so long i was having anxziety attacks with my episodes. I don't know anyone that has this condition and its very hard sometimes...since people don't understand...Now I wonder...am i still insulin resistant...I have 2 different episodes. One is shaky, dizzy, and i need something to get me back up...sugar, a mint...food:) My other ep is hot from the inside out..needing to lay down or just be still. Am i tripping? anyway...I've been rambling....so I'll stop for now.....All post will be appreciated:)

[Lizzness]

A related discussion, syncope confused was started.

[Babycakes1]

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[Sassyprincess]

( i am 5 feet). I am now 137 pounds:( The glu. was not doing anything and my doc changed me to precose..needless to say this made me gassy and i couldn't stop using the bathroom. During these 2 years i continued to get sick and pass out. Finally 2 months ago my doc went on a whim and sent me to a Card.....and here i am today. I am now taking Pindolol(2 months) and zoloft(1 month). I dont pass out as much as before but I am able to control it a little better.  It has been a long two years and I almost lost my mind:):) Because it's been so long I deal better:) At first i did not want to take the zoloft because I am not depressed...My doc told me because i have been dealing with this for so long i was having anxziety attacks with my episodes. I don't know anyone that has this condition and its very hard sometimes...since people don't understand...Now I wonder...am i still insulin resistant...I have 2 different episodes. One is shaky, dizzy, and i need something to get me back up...sugar, a mint...food:) My other ep is hot from the inside out..needing to lay down or just be still. Am i tripping? anyway...I've been rambling....so I'll stop for now.....All post will be appreciated:)

[renegade]

I am trying very hard to find out what is going on with my 18 year old daughter.  We have gaone through mny of the same situations as Leah has. This is a late response to the first comment but who knows we might be able to help each other.  My daughter plays Div 1 soccer and was unable to continue due to the same symptoms that you discribe.  This started in SEptember and we are still working hard to discover the problem.  WE have had seen cariologist, nuerologists, nuero ophlamologists (sp) and Internists.  She has had Tilt tables done, resting echo, strss echo and spinal taps done.  All have come back negative, yet the symptoms still prohibit her from playing the sport that is paying for her school!  The spinal tap was done to test for the MS possiblity and also for a symptom caled a puesdo ceribi tumor.  Which is a elevated amount of pressure found in the brain.  She came up negative on both.  Lastly we had her to a Endocrinologist that is looking at an autonomic disorder.  So far no luck on a diagnosis!  Leah, we feel your frustration, have you had any further luck in your diagnosis?

[Leah77]

Okay, I was checking this thread and I have to ask - what was The Incident...?

Thanks!
Leah

[hankstar]

I agree with gaspipe completely, its is often best not to awaken a sleeping lion or rub sand in old wounds, I am sure you'll understand, what you don't know, usually will cause you no alarm or worry. Merry Christmas and Happy New Year.

[Gaspipe]

it's a subject best left laid to rest; I think I just rhymed!!Merry Xmas Gaspipe

[worriedsilly]

Can anyone tell me when the best time to post is?

[Gaspipe]

Hey Barbie I donno I think the forum may have changed things since "The Incident" ie times,freqency etc. Time will tell Keep your chin up Merry Xmas Gaspipe

[nymomof5]

i take zoloft for anxiety (25mg) and had no side effects from taking it.  a slight dry mouth for a couple days and a little trouble sleeping the first 2 nights but they did not last and i have not experienced any other side effects form it.  so good luck on the zoloft.

[Leah77]

Hi, this is Leah again!

Thank you to the doctor, and to all the other posters, who responded to my message.

I am currently seeing a neurologist for the condition, who diagnosed it after a borderline-positive tilt table test. My heart rate went up to 170, then dropped to about 65; at the same time, my blood pressure dropped from about 150/? to 115/?; I cannot remember the second number, but the nurse said the number it dropped to was normal.

I brought up MS, actually, with my doctor, but he said it was never a consideration.

I've had testing for Lupus, and it was negative, as was all the other blood testing. I had an MRI, which was negative, as well; as were all the other tests!

So, now, I'm just waiting to see if the Zoloft works.

Thank you again!

Leah

[pms_barbie]

Would whoever is ckicking on post a question and then isnt please stop.

[uptowngirl]

Hi.  I have found success posting between 7:30-10:30 am Central time.  I have only posted twice but that is the time frame I saw suggested.  Also, both times trying on the half hour has worked for me.  Hope that helps.
Uptown

[pms_barbie]

I hope your right hun but something tells me different....lol I hope you have a merry christmas also.

[hankstar]

like I meant to say I would not want to second guess your doctor or his/her diagnosis as I am not a MD myself, just wanted make that very clear.

[hankstar]

Hi, Sorry to hear of your distressing symptoms, your symptoms sound more consistent with multiple sclerosis(MS)rather than neurocardiogenic syncope(NCS), though I would not want to second your doctor as I am not a MD. Despite the distressing  and sometimes debilitating symptoms  that MS and NCS cause, they tend to run a rather "benign" course in the vast majority of cases. If I were you I would seek a second opinion, just my personal opinion only.

Good luck and Happy Holidays.

[Cleveland Clinic]

Leah,

Thanks for the post.

The symptoms you describe are fairly nonspecific and could be associated with a large number of conditions that range in prognosis.  The manner in which you describe the constellation of your symptoms seem less like the classic description of neurocardiogenic syncope. You've left out a few of the important components of the tilt test such as the vitals while you were having your symptoms.

Overall, NCS tends to be over diagnosed and a positive tilt table can happen in other conditions and in some cases of NCS the tilt table is negative.

With this in mind it is difficult to answer your first question.

With respect to question 2, typically Zoloft is not a medication to treat NCS, but more used to treat anxiety and depression.

NCS is fairly benign in prognosis with respect to mortality, however people can suffer quite a bit depending on the severity.

I would make sure you have an good internist coordinating your care whom you can discuss your diagnosis.

good luck