Decisions, Decisions/ NCS?

Hi everyone.  I'm a 32 yo female, one child (1.5 yo), and have been having symptoms for a few years now that have gotten significantly worse in the last few weeks.  I've had fainting spells my whole life, but while 26 weeks pregnant I fainted and was down and out for 4-5 weeks.  I couldn't stand without feeling extremely dizzy, was very fatigued, and had to basically lay around all day.  I was extremely active/exercising/eating healthy up until this point, so it was shocking to say the least.  At around 31 weeks I started to feel a little better and resumed exercise until I had my child.

Fast forward to 4 weeks ago, when I had another fainting spell and was given a holter.  It showed my resting heart rate around 51 beats per min, with drops into the 40s while sleeping.  I also had one, 3 second pause, while sleeping in that two weeks.  Ever since passing out this last time I feel extremely fatigued, dizzy when standing or sitting for more than about 5 minutes, and just overall awful.  All tests have come back normal as far as structure of the heart.

We are now trying to decide what is best for me/our family.  I do not feel comfortable driving and daily activities are becoming a struggle.  I'm not sure if part of it is being nervous that I could pass out while my husband is working/I'm out with our son, or if it is actually the slow heart rate (50ish beats even when standing sometimes) that is causing the issue.  

Anyone have a similar story or advice?  What path did you chose and did you feel better right away?  Did you stay over night in the hospital with the surgery or do it as out patient?  

Up until now this hasn't affected my ability to be a mom, but now it is and I just want to feel better and be able to enjoy life with my family.  I'm currently taking Fludrocortisone but it doesn't seem to make much of a difference.  I also was told drink a lot of electrolytes/V8/high sodium foods but that doesn't seem to help either.  Appreciate any advice!

9 Comments

not much of a decision?

by Tracey_E - 2017-08-05 16:48:18

If your symptoms are from a low heart rate, doesn't sound to me like there's much to discuss, why wouldn't you do it?? LIfe's too short to suffer when there is a fix.

Have you had a tilt test? What you are describing sounds like NCS, which is part heart rate, part blood pressure drops. Meds and diet can help with the bp half of the problem, the pacer can help with the low rate and prevent the pauses when bp drops. If you do a search for NCS, you'll find all sorts of posts from others just like you. How much relief they get varies, but most of them get their lives back. 

Tilt Test

by HookemHorns - 2017-08-05 16:56:10

I did have a tilt table test, and failed it miserably.  I passed out within 4 minutes, I think it was. Because the symptoms haven't ever been this extreme in the past, my electrocardiologist (and husband) want to make sure its not a quick reaction to get it.  I just know there are some risks involved and want to be sure before I make such a big decision.  I've never heard of NCS - do you know what it stands for?  Do I talk to a normal cardiologist or electrocardiologist about it?  Thanks for the reply!

NCS

by HookemHorns - 2017-08-05 17:00:03

I just looked it up - I have been told it is vasovagal syncope, which I guess is the same thing, but never was told anything about a pacemaker when I was given that diagnosis a while ago.

Why not go for a pacemaker now?

by LondonAndy - 2017-08-05 17:02:00

I can't relate directly to your circumstances (I am male, no children, and had a pacemaker inserted as a result of surgical complications).  But it seems to me from reading many posts here over the last 3 years of having mine and the excellent contributions of many here, for the symptoms you describe that a pacemaker would be very beneficial (which obviously you are considering, and is why you have come to this useful site).

So I am wondering what is holding you back from having it done.  Is it the process of surgery itself?  Certainly I think everyone can relate to that, but pacemaker surgery is highly routine - I think over 300,000 are inserted every year.  It is also comparatively minor, with many people discharged the same day.

Or is it life afterwards?  I think I can honestly say the pacemaker has had almost no negative impact on my daily life, after an initital period of a few weeks as they checked the settings and tweaked them to suit my needs, and also the need to have annual checkups, knowing that there will be the need for it to be replaced everey 10 years or so. I have experienced no interference from other devices, and indeed I now just walk through the airport security arch without telling security to take me round a different route.  There is no negative feeling for me, and the pacemaker doesn't set off their alarm either.

So given the significant issues you are facing now, if the doctors are saying a pacemaker would be beneficial I would go for it.  Though all this is easy for me to say - I had no choice in needing one immediately, and here in the UK I didnt have to worry about whether my insurance would cover it.

Sudden

by HookemHorns - 2017-08-05 19:34:16

It's all very sudden and my doctor doesn't seem to think I need one.  I'll seek a second opinion, but to answer your question, the thing stopping me was trying to follow my doctor's advice and recommendations.  

You are a definate candidate for a pace maker

by zawodniak2 - 2017-08-05 21:31:08

A second opinion from an electrphysiologist is a must.  You will be kept over night only as a precaution as the procedure itself is relatively simple and straight forward with minimal risks when performed by a qualified electrophysiologist,  Miserably failing a tilt table test should erase doubts as to the final diagnosis.  I did not have anywhere near the severity of your symptoms and my tilt table test just showed that my heart did not respond as rapidly as it should  (lazy heart) .. I actually felt no symptoms during the test.  The doctor said  if I did not get the pace maker then, it would only be a matter of time before I would definately need it---barring a disaster.   Electrical problems with the heart do not heal and generally get worse with time as you have obviously experieced.  I got it and glad I did ---no more dizziness, anxiety and good energy  Good quality of life---well physically anyway!!!!----------------Let us know your decision and how you make out...................Good Luck

                                         Rodger

 

Do it...!!

by PatCan - 2017-08-05 22:52:04

I had similar episodes as you are having...gradually getting worse until I ended up being taken to the hospital by EMT.  I know it all sounds so scary, but as for me, I had it done about a year and a half ago and I don't even think about having a pacemaker now...It just does it's job keeping my heart in rhythm while I go about my daily life...Why be miserable when you can live like a normal person??

Pat

3 second pauses

by Chantellerose - 2017-08-10 10:29:11

hey, i like you had 3 second pauses, 3 second pauses in themselves arent much to worry about and I can see why they are hesitant for someone of your age to go straight to pacemaker, they told me as i wasnt having fainting episodes they would just wait and watch  as being so young (33) they would like to delay or avoid! ! so i had somehting called a loop reveal device inserted. the loop picked up several pauses up to 10 seconds almost every week but they still wanted to hold off!  it wasnt until I had a 20 second pause that they rushed me through to have it fitted.  as you are having symptoms I think that is the deciding factor (i didnt have any symptoms even with the 20 second pause). i dont know where you are in the world but if in UK they are probably also holding off budget wise, so if this is the case you need to push this. anyway goodluck

US

by HookemHorns - 2017-08-10 13:04:16

I'm in the U.S. and saw my new EP today.  He is very certain of NCS/Vasovagal syndrome, because of my symptoms and blood pressure.  I'm starting 3 meds that he has found to be very helpful for his patients with this in the past, so we will revisit the loop recorder/pace maker if this isn't working.  

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