Pacemaker for Syncope?

Hello everyone,

I actually don't have a pacemaker yet, but am considering getting one and wanted to see if others have had similar experiences or have any advice for me.

I am a 33-year-old woman, and on February 20th of this year, experienced my first syncope episode. I woke up in the middle of the night feeling hot and nauseous, went to the bathroom because I thought I might throw up. I was standing at the sink, and the next thing I knew, my boyfriend was holding me and trying to get me to wake up. I went to the ER and they said it was probably just a fluke, since this had never happened to me before, a vasovagal syncope (VVS), perhaps due to dehydration, heat, or some other cause.

I went on with life as normal for a few months after that, but then...

I woke up in the middle of the night feeling hot and nauseous again on May 16th. I tried to wake my boyfriend, since we made it a rule to wake him if I ever felt sick like the first time I passed out. I thought he was awake, but he hadn't woken all the way up. I went and grabbed a bucket this time (to throw up in) and sat on the balcony to try to cool off and get some air. Next thing I know, I wake up on the ground again, but this time in a pool of ny own blood from a nasty cut on my head. The EMTs arrive and place me in a chair in my living room, hook up an EKG. As the EMT was asking me what happened and how I was feeling when it came on, I felt the heat and nausea again. My head dropped back, and suddenly, I woke up on the floor again. As I looked up I could see one of the EMTs standing over me and looking at the EKG. I could clearly see the flat line, and I was terrified that my heart was stopping and that the next time I lost consciousness might be the end for me.

I spent the next day and night in the ICU, had blood drawn, an ultrasound on my heart, and an MRI to check my head and neck after the fall. Everything came back normal. I was then in the hospital a few more days for observation, and the cardiologists gave me three choices.

1. I could go home and try to manage this by lying in bed or lying down if I felt another episode coming on.

2. I receive an ILR so we could rule out infrequent arrhythmias or other heart problems as the cause for the syncopes before deciding if a pacemaker might be needed.

3. I could get a pacemaker and hope that it will resolve the syncopes.

 

I chose the ILR, but after leaving the hospital, I developed crippling anxiety and panic attacks, fearful that another syncope episode could happen at any time and that it could injure or kill me. I was admitted to the hospital's psych ward to try to help with the anxiety and have been here now for about two months.

Two nights ago, I had another syncope episode, again waking up in the middle of the night, feeling hot, and passing out. The nurse thought I was just having a panic attack, but the cardiologist confirmed the syncope with 10 second asystole the next day when he checked the ILR.

 

I have gone from never having a syncope before to having 3 of them in the past 5 months, and they terrify me. The doctor has reassured me that this reflex syncope is benign, and cannot kill me, even though the heart stops for several seconds. He said the only danger is from injury if I am not lying down when the syncope occurs.

I am really struggling to accept that this will just be part of my life now, and the doctor said that if I just can't live like this that we can try the pacemaker. He said then the heart would no longer pause, but he couldn't guarantee that there wouldn't be anymore syncopes. He recommended seeing if I continue to have an episode every couple of months and if that keeps happening 4 or 5 times, I should probably just get the pacemaker to hopefully improve my quality of life.

Does anyone else have a similar experience? If so, did getting a pacemaker help you, or do you have any other advice for living some kind of normal life with syncope? I would also be grateful for any advice on dealing with the intense anxiety I'm feeling with this new diagnosis. Thanks for your support!

8 Comments

Sounds very familiar 🥴

by Lavender - 2022-07-07 10:05:49

I think if they're already catching the pauses on a monitor, that should be proof enough that you need a pacemaker. Just wondering because I have a rare arrhythmia called ventricular standstill.  I had several fainting episodes before a thirty-three second pause was caught on a monitor. 
 

The problem with just waiting for syncope to happen is that it increases your anxiety. It also might be the time your pause is so long that you cannot resolve it on your own. 
 

Even a test by an EP might not catch pauses. The monitors don't always catch them. You know you are pausing. They have proof. 
 

Fainting is a surprise that could happen while driving, walking down steps, and many people are injured from the sudden drop attack. When I last fainted, my head missed the stone hearth by inches. That last one bought me a pacemaker.  While waiting preop, the nurse told me that most of the patients getting pacemakers have facial injuries from falling. 
 

You say that you're in a psych ward from the anxiety. I wonder if having the pacemaker will cause you anxiety as well for a while. I know I was very anxious when I left the hospital because I kept thinking I would faint again.  It took me seven months of being afraid to leave the house or be alone before I trusted my pacemaker fully. I have a normal life now. 
 

If the doctor thinks it's reflex syncope from some trigger, then what about the time you woke up feeling that way? That would happen to me. Sound asleep and awoke feeling awful. The fear made my legs tremble, my heart pound. I didn't always have enough time to lie down before fainting.  Drop attacks in the store and at home with no time to even brace myself made it dangerous. I was like a toy that suddenly had the battery pack removed. Just blank and out.  
 

Specialists told me lots of theories like vasovagal, anxiety, vestibular issues, checked my brain, stomach, muscles and nerves etc..  I am so thankful that a thirty day heart monitor caught the long pause. Those things can be very elusive and hard to catch. It validated all I had been saying for six months of fear and misery. 
 

If I were you, I would get the pacemaker. This is already affecting your life without it. You might still faint from some trigger, but your heart will go on. 

pacemaker and VVX

by Gotrhythm - 2022-07-07 15:46:31

I too have vasovagal syncope, diagnosed several years after I got a pacemaker.

Here's what you need to know about pacemakers and syncope.

Normally, as part of the body's natural protective mechanism, when blood pressure falls, the heart rate speeds up so that blood will continue to reach the brain. That's to keep the brain alive, even if it's not getting enough oxygen to stay concious.

In people with VVS, some glytch has developed in the system. When the blood pressure falls, the heart rate falls too. Sometimes all the way to zero. Unlike a "normal" faint, no blood is reaching the brain at all. Total unconsciousness happens fast.

Can a pacemaker help? Partly.

A pacemaker does not control blood pressure. Even with a pacemaker, your blood pressure can still fall and you can still faint.

A pacemaker can and will keep your heart rate steady even if your blood pressure drops. During a VVS episode, the pacemaker will keep your heart rate at whatever base rate the pacemaker is set to. Even thought you still might pass out, you have a better chance of staying concious for long enough to lower yourself into chair, bed or floor and thus avoid a fall. And as you have seen, the fall is as dangerous as fainting is.

Obviously, I had a heart condition that needed a pacemaker before VVS was diagnosed, but if I needed one, only for VVS, I would not hesitate. It won't stop VVS, but it could save your life.

 

Synvope

by ROBO Pop - 2022-07-07 16:01:24

I have a CRT-D ( Pacemaker and defibrillator for you novices) and am paced 100% in both ventricles. In January I took an unexpected nose dive and rearranged my face, not to mention the damage to a bedroom dresser. Spent 4 glorious days incarcerated at a local hospital thanks to a subdursl hematoma. Since, I've had several additional episodes but fortunately no further damage to my handsome good looks. Point being I wouldn't just assume a pacemaker is going to resolve this issue for you.

My Experience

by Shaun - 2022-07-08 11:16:32

MELISEO,
About 8 years ago without any warning whatsoever I started having syncope episodes EVERY TIME I fell asleep, in total it happened about a dozen times over a 24 hour period. My wife kept taking me to A&E but they couldn't see any problems. Eventually my wife insisted that the hospital admit me overnight for observations. Of course as soon as I fell asleep I had another syncope episode and the ECG revealed 40 seconds of irregular activity with 5 second gaps. The doctors diagnosed Sick Sinus Syndrome wheupon I had a dual lead pacemaker implanted. The pacemaker is configured to not let my heart rate drop below 60bpm, no rate response is configured and I'm not on any medication. On receiving the pacemaker the syncope episodes stopped immediately and the only thing I get ocassionaly are anxiety symptoms. But even those seem to have stopped since returning to my faith (I was a 10 year lapsed catholic).

I wish you a very speedy return to health, please let us know how you get on.

Shaun.

Similar Experience

by JayKay - 2022-07-08 21:26:40

Your experience sounds very similar to mine. Details of my experience are in my profile, so I won't rehash them here. A few thoughts come to mind after reading your post:

1) If you can, I'd highly recommend communicating with an Electrophysiologist (specialized cardiologist). Regular cardiologists are not as well versed when it comes to electrical abnormalities in the heart. I was also originally diagnosed as having vasovagal syncope, but ended up having a more serious condition. 


2) It might be good to keep track of your menstrual cycle to see if there's any relationship between your episodes and when you start bleeding. This can trigger arrhythmias for some people. I too was 33yrs when my first episode occurred, had all normal labs, and woke up in the middle of the night sweating and nauseous.

3) I'm really sorry this is happening to you. Regarding the anxiety piece, I have a prescription for 0.5mg Xanax as needed 2x per day and it has really helped get through rough nights. I haven't taken any in about month, but it's nice to have just in case. 
 

Wishing you all the best,

jk

I’ve Decided

by Meliseo - 2022-07-13 09:20:25

Hello everyone,

Thank you all so much for your input. It makes me feel a lot better just to know I'm not the only one who's experienced something like this.

After a lot of deliberation and research, I've decided to go for the pacemaker. Even if there is vasodilation involved in my syncopes (and I don't actually have confirmation of that), I think it will at least bring me peace of mind to know that the asystoles will stop with the pacemaker.

I found a lot of encouraging data that the pacemaker may just work to resolve the episodes or at least lengthen the span of time between episodes.

I'm hopeful that taking the heart pauses out of the equation will be enough to overcome the anxiety I feel around this whole situation, and get me my life back.

I don't have an appointment scheduled yet, but I'll be sure to check in with an update.

Thanks again for all your kind and helpful comments and support!

Peace

by Lavender - 2022-07-14 22:56:18

It sounds like you're a very intelligent person who initially has panicked but given time, you're researching and trying to find a solution you're comfortable with, a decision made with knowledge. 
 

Good job-when something scary happens to me I follow a similar pattern. You're going to be alright!

☮️💓✌🏼

Update: I‘m Okay!

by Meliseo - 2022-11-22 06:16:58

For anyone who might be reading this post in the future:

I'm okay! \(^o^)/

I've had the pacemaker for about four months now, and I feel so much better! The combination of having the pacer and taking anti-depressants has squashed my anxiety. I no longer feel afraid all the time, and I haven't passed out again since receiving the pacemaker. It took a while to heal from the surgery and regain my confidence, but it's all better now. :3

Thanks to everyone here for helping me get through this difficult hurdle in my life. Your support made a world of difference for me!

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I've seen many posts about people being concerned about exercise after having a device so thought I would let you know that yesterday I raced my first marathon since having my pacemaker fitted in fall 2004.