neurocardiogenic syncope and pregnancy

[beth27]

Hi my name is Beth. I was diagnosed with NCS when I was 20. I am now 27. I can't stand for more than a couple minutes without having to sit down. I was taking Proamatine and Florinef, which helped at first but gradually I was getting worse and worse. The fatigue was horrible, I couldn't do anything during the day but sleep. Then I started having shortness of breath and chest pain everyday associated with NCS. No doctor has been able to help. I finally found something that is helping alot. But I'm still not cured of this. It's a natural supplement.... called Ambrotose, it has completely alleviated the chest pain and shortness of breath as long as I take it everyday. And another product called PLUS which supports the endocrine system which is the root problem of this disorder... the adrenal glands aren't functioning correctly, so this helps balance it out. It helps tackle the root prob and not just the symptoms like prescription meds. I want to know what has helped others and has anyone gotten pregnant with this condition and can your body handle a pregnancy with NCS? What did you experience? Does it make you worse? How did you handle childbirth too?

[tranewp]

I'm glad I found this site.  I'm 25 weeks pregnant and fainted 2 times so far.  I've fainted several times in the past but the Doctors and I always related it to "reactive hypoglycemia".  I have even seizured after/while out.  However, my last few episodes was when I was eating or just finished eating.  Therefore, I'm not convinced that low blood sugar is the cause of these any longer.   I am currently on a heart monitor and being evaluated by a Cardiologist.  I will mention this and the tilt test to her in hopes she will find out why I'm fainting.  

[kmga]

I am 33 and was recently diagnosed with NCS 2 months ago after experiencing these spells after getting pregnant.  Looking back on life, I guess I have had it, but really with limited episodes that I just chalked up to a weak stomach (usually when giving blood or extreme heat).... I am on atenolol once a day, and it seemed to work when I was first put on it, but now 2 months into it, my episodes are becoming more frequent and just as bad as what they were before I started.  I've been on the floor in the supermarket, home depot even church.... and numerous times at work (I teach)... nothing like teaching young children while lying on your back in the front of the room.... I am 28 weeks pregnant and my symptoms started right around the end of the first trimester.... needless to say the second trimester was the worst for me, and now starting my 3rd it's not looking much better.  My dr. never mentioned this as being a high risk pregnancy or said that I couldn't get pregnant again.  I have to say that I am scared to death about labor and delivery.  and scared that my baby will not be healthy as a result of all of my episodes... Any peace of mind anyone can provide would be greatly appreciated.

[beachouse]

I'm so grateful to have discovered this site. I also have NCS and experienced my worse episode on Friday night after giving blood. For the past 11 years, I've been unable to have blood drawn, receive a shot, have a medical procedure, etc. without the fainting, vomiting, extreme sweating and paleness, etc. My husband and I are very concerned and nervous about getting pregnant. I also have high blood pressure and have been taking Atenolol for the past 5 years (I'm 29 now). I live between Ann Arbor, MI and Toledo, OH and would love any recommendations for physicians, cardiologists, OBGYN's, etc.

[MegMathiot]

I was diagnosed with NCS when i was 15 during a tilt table test where I flat lined for 28 seconds 30 mins into the test. Then at the age of 17 i was diagnosed with orthostatic hypotension as well. At that point I had asked my cardiologist if I would need a high risk Ob/Gyn if i were to get pregnant and they said yes. I am just curious if anyone has had what i have and had a successfull pregnancy?

[LindseyP]

I am 25 and my husband and I plan on starting to try and get pregnant within the next few months.  I was dx with NCS last year when I passed out in under 10 seconds on the tilt table.  The nurses said I was the most positive test they had ever seen.  Since then I am taking Atenolol 25 mg 2x/day.  Once in the morning and one at night.  My life has been totally different since starting this medication.  My HR has decreased from over 200, to now resting in the 90's and when I work out in the 160's.  In the past year I have only passed out ONCE and it was after I was unable to maintain my BP from donating blood.
I have been cleared by my OB to get pregnant and have been told to set up an appointment with a perinatologist to be monitored closely during pregnancy.  My cardiologist has cleared me as well, although I will have to stop taking the atenolol when I become pregnant and will be placed on a high sodium diet to maintain my BP.  My OB also told me that I will probably be on bedrest for the vast portion of my pegnancy and she expects my body to be unable to maintain my BP at a safe level.
I am excited to become pregnant but I pray the baby will not be hurt by my NCS.  Any words of wisdom from someone who has been through this process?
-Lindsey

[Knes]

Am 28 and was diagnosed with NCS in 2008...would have been sooner but after an EKG, Echo, CT, etc. I thought it was related to stress or migraines.  After having an intense episode while seated and giving a training session for my job, I decided that I needed to find out what was causing my fainting.  I've tried beta blockers (metropolol sp?) and another that I can't remember the name of...back in the beginning of 2009 but then had several episodes while on the medications.  Considering the side affects of the meds (angina, heart palpitations) I decided that it made more sense to manage it myself without feeling so terrible (extremely tired/increased chest pain).  My syncope seems to be more infrequent than some others that have posted - have not had a full episode in 6 months but may also be due to avoiding my triggers.  I have a friend with vasovagal whose syncope seems to come on much faster than mine so it may depend on each person.  For me it's definitely feeling naseous, palms start to sweat and then when I'm close to fainting my vision is messed up (pixelated is probably the only word I have to describe it...I can see a word and identify the letters in the word but I can't tell you what the word is, kind of like my brain can't process it and put it together?)  Does anyone else have issues like that?  Growing up I thought when it happened that it was a migraine but am now realizing that I was probably sitting/standing too long.  

I'm very grateful to all of you for posting as it is difficult to find out information on NCS and I have been wondering about issues with pregnancy.  Please keep me updated on your progress - I'm looking to have kids in the next few years and want to know what I'm up against.  Would also encourage everyone to get a full copy of their medical records from their cardiologist.  I pulled mine recently to switch to a female cardiologist (FINALLY found one, am just more comfortable with a female vs. male) and found on my chart under Atria it says the atrial size is normal for both left and right but then continues to say 'The discontinuity of the interatrial septum is suggestive of an atrial septal defect.  There is a spontaneous right to left interatrial shunt.  The shunting is mild in size."  This was news to me as it was never discussed in my 4 visits with this cardiologist so I'm going to ask about it (have an appt. Thurs.) to find out if this could be a contributing cause/trigger.

Also am wondering if any of you have a tendency to break out into hives frequently?  I never had a problem with this growing up but in the last two years it seems I constantly break out into hives (I'm pale so this is pretty hard to hide and very embarassing!) on my chest and sometimes on my face (spreading from my ears across my cheeks).  Other times when I am stressed I will get this very dark red band across my nose (looks like someone punched me...yeah good times).  I've tried several doctors that told me it was Uticaria and that my skin is very reactive to emotions/histamine release.  Does anyone else have this issue?  I'm wondering if it's at all related to chemicals that could also cause NCS?  At one point I tried Claritin at night, Zyrtec in the morning as well as large doses of Vitamin C to decrease the amount of histamine produces and Bromelain (sp?) to prevent histamine from attaching at the receptor site.  Unfortunately this just led to having hives and being really really really tired!