Aa
Aa
A
A
A
Close
Avatar universal

neurocardiogenic syncope and pregnancy

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?
35 Responses
Sort by: Helpful Oldest Newest
Avatar universal
I was not diagnosed with neurocardiogenic syncope until after I have had three kids. I started having severe black outs after my second but during my third pregnancy everything seem to be ok. The day I was in labor with my third child laying in the hospital bed I started feeling as if I was just going to "pass away" is the best way to describe it. Then my blood pressure dropped to 43/31 and they had to give me an emergency dose of (who knows) to make my blood pressure raise back up. Had to have oxygen and all. I can honestly say if I ever felt close to dying, that was the day I did. I was very scared. Finally, I went to cardiologist and she said I had neurocardiogenic syncope. Which, explains a lot to me now. I want another child and actually did get pregnant again but was ectopic. Still plan to have another one but that worry is always there. Will I just go out and not come out of it? Is it to much stress on my body to deliver again?
Helpful - 0
Avatar universal
I have had NCS since I was nine. My NCS is severe, when I pass out my heart stops.  I spoke to both my cardiologists prior to getting pregnant and they stated that I was healthy and in good shape and pregnancy would actually temporarily cure my condition, but that it would come back when the baby was born and my blood volume returned to normal.  They were right.  What they did not predict is that my blood pressure would rise during pregnancy to the point it that I was diagnosed with preeclampsia.  My blood pressure is normal 90s/60s and in my final trimester of pregnancy it was 130s/90s.  I delivered a healthy baby boy, but when I arrived at the hospital I realized my OB/midwife had not consulted anesthesiology.  When I arrived at the hospital doctors were arguing about my NCS diagnosis and ultimately I was transferred to another hospital that was comfortable with my NCS diagnosis.  I would make sure that your OB's and Cardiologists consult with anyone that will be caring for you during your pregnancy.  Even if you are not going to take meds have them consult with anesthesiology just in case.
Helpful - 0
Avatar universal
Hello,

Just read an old thread related to vasovagal syncope, which I have just been diagnosed with and am 13 weeks pregnant.  I am in the Toledo area and was wondering if you had the phone number to the doctor you referenced in the article.

Thanks,
Jen
Helpful - 0
Avatar universal
Want to a add a quick follow-up. There are a number of women who have stated about how they drink quite a bit of water, and take salt tablets, and get enough sleep, and eat at regular times and how that helps a lot. These are similar to Ayurvedic lifestyle adjustments but the Ayurveda is so much more specific on overall diet (for instance I don't have a cold breakfast - room temperature or warm/hot - because it aggravates the syncope), and more specific about why eating regular times, or eating what kinds of foods (for instance salt increase) is helpful.
Helpful - 0
Avatar universal
Hello Beth.

I came to this site because I am considering getting pregnant. I have had NCS for 17 years. I had an atrial septal defect repaired when I was 12, I occasionally had dizzy spells before the surgery but not many. Fainting began about six months after surgery and continued to get worse until I passed out on a very regular basis. Eventually, after a correct diagnosis for NCS, I was put on atenolol, proamatine, florinef. I went off the meds after six years because of side effects and because they weren't sufficiently preventative. About two-and-a-half years ago I started on herbals and lifestyle adjustments from an ayurvedic doctor. My fainting went down from 6-10x week (minimum) to 0 for over a year. I also see a craniosacral therapist about every six weeks, it manages my stress levels and I have found that it prevents "bad" episodes of either extended unconsciousness or spasms (looks like seizures).  After starting on the Ayurveda regimen I went to school full-time (on a 35-40 hour week class time load) and some fainting did come back so I am still working out how to balance it all but this is the closest thing to a cure I've experienced.

I first read about Ayurveda in Deepak Chopra's book "Healing the Heart" you will need to see an Ayurvedic doctor (for what is primarily a Vata imbalance) but the book introduces the concept well. Another of his books "Perfect Health" gives a more general overview of Ayurveda, as well as the many different types of treatments that may be prescribed by a doctor. "Eat, Taste, Heal" is another good Ayurveda introduction book.
Helpful - 0
Avatar universal
I was diagnosed with NCS at age 11, the first episode during science class looking in "light boxes", I had a positive tilt table test shortly after (with a flat line for 30seconds), and the doctors kept claiming it was something I would "grow out of." I am now 26 and still have episodes during the periods that my cardiologist "weens me off" my meds to see if I'll continue to have episodes. Needless to say, its not something I'll ever grow out of. I have been on metoprolol extended release 25mg for a few years solid now, only episode Ive had being on medication was after donating blood, which is a NO NO for anyone with NCS, drops your blood pressure way too low. Other than that, the beta blocker works so well for me! I just recently visited my cardiologist to talk about pregnancy, he advised me to go off my meds a few months before trying to get pregnant so its not such a shock to your system (going off meds and getting pregnant in a short period). I have been off for just a few days, so far so good. Lots of water and salt! I hope that when I do get pregnant it goes well, my cardiologist said everyone is very different, most are worse in the beginning, but almost always get better as the pregnancy goes on because you actually have more blood when pregnant. Good luck to everyone out there with this disease, I've struggled for so long with it but it could be so much worse! The metoprolol has made life so much easier, I am a hairstylist and stand on my feet for 8+ hours everyday with no issues! If anyone out there is struggling, I highly suggest it!
Helpful - 0
Avatar universal
I'm 21 years of age and although I have only been diagnosed with NCS 3 years ago the doctors have been investigating it since I was about 4 years old.
I want to start a family but my husband is reluctant as he is worried about my health and complications. my episodes seem to be linked to stress levels and anxiety levels. I am taking sertraline for my anxiety which has worked well and I haven't had an episode in about a year before that it was a few times a year (increased to 4 when I got married due to the stress of it all).
Does anyone have any experience with stress related NCS? And how does it affect pregnancy? After the first five months or so I will be free for bed rest but I'm sure my pregnancy won't wait for me.
Helpful - 0
Avatar universal
I am 29 year old female just diagnosed with this disorder.  I have only fainted twice: when I was 22, under circumstances which didn't cause much of a suspicion at the time (I'd just had oral surgery), and when i had the flu.  I didn't find out until after the birth of my second child that I had NCS.  He stopped nursing abruptly and my second pregnancy was so close to my first that I hadn't stopped nursing.  I think this is significant because the oxytocin probably helped me feel more normal and the loss of it has triggered the severity of symptoms I am now experiencing. I was positive at 16 minutes on the tilt table. I blacked out very little during both my pregnancies - less than average I would guess.  I had an epidural both times I was in labor, with no issues.  I wasn't considered high risk because no one was aware that I had NCS.  We are planning on trying to get pregnant again soon.  Good luck to everybody.  I just thought some people would be interested in my pregnancy/labor experiences.
Helpful - 0
Avatar universal
I also have NCS and I'm 30 weeks pregnant.  I'm 38 years old and have had this since I was in my early 20's.  I had a seizure during my tilt test.  I did have a few episodes during the first few months of pregnancy.  I teach elementary school so, sitting was not an option for me.  My cardiologist put me on a high salt diet and gatorade.  I also continued to take a low dose of pristiq because it kept my blood pressure rate up.  The pregnancy went well until this week.  I started to have shortness of breath, an elevated heart rate, and was seeing spots in my eyes all day.  My cardiologist put me out of work until I deliver.  This is extremely difficult for me because I'm not one that can sit at home.  I'm curious about NCS during delivery and after.  Any info?  
Helpful - 0
Avatar universal
So how is your pregnancy going? I am 31 weeks now w/ NCS & finding for the first time inmy life my BP is at the normal range. Was 70's/40's in the beginningof the pregnancy.  I haven't passed out in like 3 mos. I've just called my cardiologist to see if I should come down off my meds some (BP was 120/70 the other day) I take Midodrine & Inderal.  My paliptations & chest pain are beginning to increase which makes me wonder. They are sending me for Echo & Holter next week.  It was interesting to see how many people responded to your post & have all the same issues.  My MD does however think the baby is growing well (despite betablockers sometimes causing small birth weight) & she has seen many of her patients successfully deliver.  Hoping tghe BP doesn't continue to go up - my high risk doc said that sometimes happens at the end of the pregnancy w/ people w/ NCS.  Just wondering if your pregnancy has impacted your BP similarly?  Thanks - redrootoo
Helpful - 0
Avatar universal
This is Beth, the original poster. I am now pregnant -6 weeks. I am starting to have low blood pressure everyday especially in mornings. It doesn't seem to improve until late afternoon. Than I can start doing things. It runs 105/60 and less. But no matter how much salt I take in , it doesn't increase. I can't do much but lay around.
Is this typical for everyone else? How do you handle it? Everything else is fine so far. Any other experiences would be helpful. Did anyone else continue their SSri during pregnancy to help with ncs? My doctor has recommened I continue Zoloft 50mg.
Helpful - 0
Avatar universal
My husband and I are considering starting a family but he is hesitant and scared because of my health.  I am a 2 year Cancer survivor with only ONE kidney and have had NCS since 2003.  I also suffer from severe Migraines but I am positive every day and feel blessed to be here on this earth.  I can't wait to continue God's blessing.  I am a little scared but if it is "meant to be it will be".  I am just searching for any advice someone might have who can relate to my situation and help provide support or suggestions to release tension.  Thank you.      
Helpful - 0
Avatar universal
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.  
Helpful - 0
Avatar universal
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.
Helpful - 0
Avatar universal
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.

Helpful - 0
Avatar universal
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?
Helpful - 0
Avatar universal
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
Helpful - 0
Avatar universal
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!
Helpful - 0
Avatar universal
I am currently 35 weeks pregnant with my second child. I started with symptoms in my teen years and was diagnosed when i was 19. I have NCS but they had a hard time deciding if it was POTS or NCS. I have a small mitralvalve issue. With my daughter my condition improved the longer i was pregnant the more 'normal' i felt. More energy, normal BP, less fainting.Early on i fainted alot. Then for the first time ever i had high blood pressure. During my first go round i was on salt tablets to increase my BP as the BP normalized they lowered my dose but when i went high i had to stop the salt and drink a liter a day of Gatoraid, and other drinks. i got hugely bloated and had a csection at 37 weeks my BP was 197/100 right before they got my daughter out.

This time around with my son i have had a much better time of it. Two or three fainting spells early on but since then other than unrelated gallbladder issues much easier. I have had some spells (palpatations and just icky days). I would say that managing stress, fluid intake, getting your meals worked out that will help alot. With the meal thing remember that if you eat too much at once t can cause blood to pol in your digestive track. I found that not eating often enough or toom much at once really sets me off when pregnant.

I am really wondering about Labo and delivery we are trying for VBAC this time and i was wondering if anyone had advice during the actual labor and delivery. I have to have an epidural because of the previous c-section in case of rupture. I would like to say that the c-section was a hard recovery because of the NCS. I lost a lot of fluid quickly and the drugs messed with me. We just don't heal as fast as others.

Helpful - 0
Avatar universal
I am 30 and was diagnosed with NCS 10 years ago.  I took ProAmatine and Florinef for about 2 years then threw them all out.  I was tired of the strict regimen for the meds and they weren't approved for pregnancy.  I made the commitment to drink more water and to eat a snack if I was getting hungry.  I often eat a small snack at bedtime.  Studies have shown that water intake raises blood pressure, which is the goal for anyone with NCS.  For me this has reduced my episodes to almost none at all.  My doctor didn't see any problems with pregnancy.  Our first was an early miscarriage,  It took 4 years to get pregnant again (DH did have testicular cancer and chemo during this period) and we now have a wonderful 2 yr old.  My doctor treated the pregnancy as high risk but felt I could have an epidural.  I refused.  Labor was less than 5 hours.  We have since had another miscarriage but are expecting a little girl in 3 months.  If I do have an episode it is almost always early morning and I didn't eat a late night snack or during the day and I realize that I haven't had very much water that day.  Best of luck!
Helpful - 0
Avatar universal
I have been diagnosed with NCS and am nine weeks pregnant. I was hospitalized yesterday for a fainting spell and the doctors tell me to eat a small amount every 2 hours and to drink a glass of water every hour but i'm still very weak.  I'm terrified that my baby wont make it. I have had a miscarriage before so if this baby makes it, it will be a miracle. Best of luck beth! Does anyone know of any good doctors that specialize in this?
Helpful - 0
Avatar universal
i have this same problem just found out about a month ago.... found out i was pregnant 2 wks. later ... but ive been having the problem for yrs. (blackouts etc.) and they (doctors) all kept telling me it was just how my body handle my pregnancy .... but it was going on longer than that just got worse when i was pregnant i have 2 other children and with them i spent most of my time in the hospital or on bedrest because they didn't know exactly what was going on. With my son (my oldest) i had 3 actual blackouts the rest were sever light headedness with the one blackout i was in the hospital for 2 wks because i was home by my self and ended up hitting my head off the porcelain tub when i fell over i was about 7 mnths preg. and my daughter i had just had a lot of over night stays i made sure i had someone home with at all times when i was preg. with her i had more blackouts with her but they weren't as severe. So your best bet is to make sure you always have someone with you drink plenty of water and rest.
Helpful - 0
Avatar universal
I was diagnosed with NCS when I was 19 (passed out in 7 minutes on the tilt table) ; I am currently 28. My husband and I are moving towards getting pregnant. I say moving towards because, with NCS, it's gotta be planned.
Prior to our pregnancy plan, my doctor has had me on 30 MG of Adderall XR (the ADHD drug) a day which is combined with 5 MG of Proamatine every 3-4 hours. I cannot tell you what relief these medications bring. I am able to get up and go to work (as a teacher) and function at a normal level on a daily basis. My doctor's name is Blair Grubb and he is connected to Toledo University's College of Medicine. He is an expert in the autonomic dysfunction field and is simply a genius (He has patients coming to him from other countries-- that's how good he is).
Dr. Grubb ,and his cohorts, did a controlled study on pregnant women who have NCS. They found some amazing things and have published an article: " Outcomes of Pregnancy in Patients with Preexisting Postural Tachycardia Syndrome". It was published in the PACE (Pacing and Electrophysiology section, Division of Cardiology, Department of Medicine, University of Toledo Medical Center, Toledo Ohio. Published in August 2009, volume 32). They studied 22 pregnant women: during the course of study symptoms remained unchanged in 3, improved in 12, and worsened in 7 patients. All women completed their pregnancies with limited to no complications. The major medications of the study were beta-blockers, midiodrine, SSRIs, fludrocotisone, and combinations of the medications.
I encourage all of you to have your doctors find this article.
Currently, I am stepping down off of the Adderall (not safe during pregnancy), and modifying my medications. I have a high-risk OBGYN who is willing to work with Dr. Grubb, my husband and I, and our future little one. According to both my OBGYN and my cardiologist, there is no reason to avoid pregnancy and it is a workable situation.
I wish all of you luck. I know it is incredibly frustrating and discouraging.
Helpful - 0
Avatar universal
Hello All. I am 33 weeks pregnant and have just been diagnosed.  (Although we are still waiting on the tilt table test which can't be done while pregnant). During my first pregnancy I experienced symptoms which I thought were bad...but have realized in this second pregnancy that I was lucky then. I see a high risk OB, a pulmonologist, and a cardiologist. I pass out several times a day. Experience blood pressure as low as 60/40, a heart rate as high as 161, and my pulse ox hovers around 85% causing me to be on oxygen. Our baby has stopped growing due to the lack of oxygen I experienced for 30weeks before we could get a doctor to take us seriously. (We go in a gain Oct. 5th to have him measured). We will NOT be having anymore children. My husband actually gets his vasectomy this Friday. This has been a terrifiing conditoin for me. I am scheduled to deliver via C Section (which was bumpy with my daughter). I have extreme anxiety about dying.
Helpful - 0
2
Have an Answer?

You are reading content posted in the Heart Disease Community

Top Heart Disease Answerers
159619 tn?1707018272
Salt Lake City, UT
11548417 tn?1506080564
Netherlands
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Is a low-fat diet really that heart healthy after all? James D. Nicolantonio, PharmD, urges us to reconsider decades-long dietary guidelines.
Can depression and anxiety cause heart disease? Get the facts in this Missouri Medicine report.
Fish oil, folic acid, vitamin C. Find out if these supplements are heart-healthy or overhyped.
Learn what happens before, during and after a heart attack occurs.
What are the pros and cons of taking fish oil for heart health? Find out in this article from Missouri Medicine.
How to lower your heart attack risk.