Pre-syncope with a pacemaker for Sick Sinus Syndrome

This is my first post, hoping someone can impart some knowledge! I was fitted with a dual chamber pacemaker in October 2020 for heart failure, asystole, syncope etc. due to Sick Sinus Syndrome with no other regulators in the heart backing it up. 

In January 2021 I was back in hospital for checks because I was having pre-syncope episodes. After two days in the hospital, I'd only had two very minor episodes, which the ECG did not pick up, so the conclusion was that it wasn't the heart causing the problem. After that, I didn't have many reocurrences and they eventually stopped altogether, so it seemed it was just a "blip". However about a week ago, the pre-syncope episodes started again.

I have had 8 so far today, and it is horrible, worse than before. It starts with a very minor feeling in the chest, then immediately turns into a full-on weird feeling in the head and the upper body, with tingling up the leg (usually the right leg), and sometimes it's so bad that if I didn't lean on something I feel I would actually pass out. Immediately after, I break out in a hot sweat. It happens when standing, sitting, moving around doing chores, and also when I'm laid in bed. I daren't drive my car.

Has anyone else had such experiences? I plan to contact the  hospital of course, but it would be nice to have some "insider information" first. I've tried researching this on the internet, but so far not found anything useful.

I do not take any medication, have no "heart disease" other than the (redundant) sick sinus. I am fairly fit, do active sports such as cross-country skiing, hill-walking and gym etc. The pacemaker has been adjusted once to accommodate for the exercise, which seems to work, for aerobic at least. The doctor seemed to recommend that I shouldn't do anaerobic, which I was disappointed with. I would be interested in any comments on that, but mostly would be grateful for any advice on the pre-syncope.


10 Comments

You may not like my answer

by AgentX86 - 2021-04-06 16:42:02

I had a similar problem.  In my case, it only happened one day a month. In that 24 hours, I could have a half dozen to twenty episodes.  My cardiologist and EP had no ideas.  No one did, until I had a full-on tonic-clonic seizure while we were on vacation.  Obviously, it wasn't my heart.  However, it might just have been. 

The theory, unprovable, is that because of my arrhythmia, at some point before I was on anticoagulants, tiny blood clots formed in my left ventricle and went to the brain causing "micro-infarcts", or micro strokes.  Not enough to even feel but damaging a tiny part of the brain.  This damage screwed up the electrical activity, causing these "episodes". 

I've been on drugs for it since and, while they're not perfect, have eliminated 80% of the episodes and made the rest far less problematic.  My neurologist is still concerned because any one of these episodes still risks a full melt-down.

What I'm telling you is that since your cardiologist can't figure out what's happening, you really have to look elsewhere.  It's something.  Don't let anyone brush you off. 

Like I said, it happened while were on vactation.  We were just finishing lunch at a restaurant when it happened.  Five minutes later and I would have been driving my wife, DIL, and granddaughter.  This stuff is serious.  You have to push to get answers.

Presyncope with Pacemaker

by XCSki - 2021-04-06 17:32:43

Thank you for your prompt reply AgentX86. No, that doesn't sound great, I've never heard of a tonic clonic seizure so I've just looked it up, very scary. Were your symptoms very similar to mine?  I had already read that the symptoms could be TIA, which are mini strokes - my mother had them so I wondered if I could have inherited that from her and it's actually nothing to do with the heart, just coincidental timing that could be confused with the heart. I'm getting a bit fed up - in the last 5 years I've been dealing with the repercussions of cancer surgery and chemo, then more recently the heart failure, so I really don't want another major condition. My poor hubby has been through it all with me, really was hoping for a break for us both. 

But thanks again, I think I've been in a state of disbelief that something else could be wrong. I will get onto the hospital tomorrow - oh joy.

Let us know how it goes

by Persephone - 2021-04-06 18:33:37

Good luck with your hospital visit, XC - please give us an update afterwards if you wouldn't mind.

like persephone

by Tulp - 2021-04-06 18:42:15

Id like to echo Persephone

Hope you will know some more

Symptoms

by AgentX86 - 2021-04-06 19:06:59

Very similar.  It took me a while to  name the symptoms.  Words don't really describe the feeling.  I was calling it "dizzy" but there is no sensation of spinning.  I settled on "falling forward for many seconds, without falling forward". It took a while but I could also identify a peculiar smell that isolated it from any arrhythmias.  It smelled just like I'd been clocked in the head.  Since you were never a boy, you probably didn't have playground fights but it smelled a little like the smell of a nosebleed.  Like I said, it's not an easy feeling to describe and it probably took me a year to be able to verbalize it to this degree, even.

I had SSS, with asystoles, presyncope, flutter and the whole Magilla.  I thought that after I got the PM, these episodes were over.  And they did go away for a while - just long enough to let me think they were behind me.

A few years ago my vascular surgeon, though didn't think it had anything to do with blood flow to the head, suggested that I log every instance.  I kept that log on my phone for two years (still keep it) until the siezure finally got any attention.  The log finally showed doctors that I wasn't dreaming it.  I understand that it's hard to understand the aura  almost exactly a month apart (often on the same day of the month). I had to show the log to my neurologist to get him to believe it.  If I were female, yada, yada, yada.  Sheesh, and I'm 67 (68 now)!

BTW, when I had the siezure I'd had this "aura" several times that morning.  I was just turning to my wife to tell her that it was happening again when I went down.  Scarry, for her, anyway.

I'm not saying that this is your problem but don't take any crap from doctors.  It may be serious. I'm just giving you my story.

My Experiences

by Shaun - 2021-04-07 09:17:58

I have a dual chamber pacemaker for Bradycardia (SSS). The rate response on my pacemaker is not set, I don’t take any medication and I’m very active. Ever since the pacemaker implant 7 years ago I go through periods where I may experience strange symptoms which I put down to ANXIETY. I’ve never really worked out what the triggers are, but I assume there must be some sensation that I associate in my subconscious with passing out. During the 24 hours that preceded my pacemaker implant I passed out about a dozen times as I was falling asleep, so I guess it must have left its mark on me. In the early years it used to concern me and I had lots of tests carried out, now it’s just one of those things I live with. I can’t really describe the strange feelings I sometimes get other than to say they feel very familiar, disorientating and leave me sweating. Sometimes I even wake up at night sweating and disoriented (wondering what day of the week it is). I can go for months without it happening, then it can occur a couple of times in one week. I’ve never really thought about pre-syncope before however I have wondered on ocasiones whether my blood oxygen levels might be low and if it would be worth buying an oxygen level monitor that I can sleep with. Another thing I sometimes get (about once or twice a year) is an ocular migraine with aura (no idea if this is related). Over the years I’ve grown to trust that my pacemaker will stop me from actually passing out so none of these symptoms concern me enough to return to my doctor for further tests - I’m just sharing my experiences.

"Sometimes I even wake up at night sweating"

by AgentX86 - 2021-04-07 14:15:16

Have you had a sleep study, looking for sleep apnea?

Occular migranes are very common.  They seem so common that people don't talk about them much.  Interestingly, they also seem to be associated with LA ablations, where the septum is pierced.  ...or, really, any hole in the septum.

Thirty years ago, long before my heart problems, I'd get them almost every day, often several times a day.  Now it's, maybe, a couple times a year. If I didn't know what they were, it would completely freak me out, now.  I have the early signs of glaucoma (treated) and sudden loss of central vision would scare the crap out of me.  As it is, I just lay down and enjoy the light show and thank &diety. that I don't have the migrane pain to go with the aura.

pre-syncope dejavu feelings

by busby - 2021-04-07 20:00:16

Hi XCSki, sounds like you have a similar condition to me. i have had mine for about 20 yrs, and about to have my 3rd replacement. At first, every couple of months, I would have a bout of pre-syncope feelings. i think stress, dehydration and things like jet lag would bring it on. after about 5 yrs they eventually turned on rate drop response and i have hardly had an episode since. Rate drop response is when the pacemaker detects a sudden drop in heart rate, it will speed up to 75 bpm for 2 mins. I have never fainted in the 20yrs, but those feelings were not pleasant. unfortunately with our condition,we not only suffer from our heart trying to stop, but our blood pressure also drops and it is that which gives us the symptoms. It seems to to happen to some people around the age of late 50s. It is interesting that now that I have a fitbit, I can log in a sleep time and can see where this happens. I always have >9,999 rate drop episodes detected at my pacemaker download.

Migraine with aura

by Tulp - 2021-04-07 22:35:14

AgentX86 you talk about migraine with aura, gosh, do I know what that is...

Just wanted to mention that one of my triggers for getting migraine is when I eat thnigs with MSG in it. I know now that that poison is really bad for me

Just wanted to tell you, just in case

Pre-syncope with a pacemaker for Sick Sinus Syndrome

by XCSki - 2021-04-10 10:50:34

Thank  you so much everyone who has commented so far - there is such a wide range of experiences and what stands out most is just how differently we are all affected with this condition! I can see from my digital medical journal that a doctor has been assigned to my case, so I hope to hear from him/her next week. I have noticed that the extreme exhaustion, plus the pressure I’ve been feeling on my chest over the last couple of days, disappears when I exercise, and remains absent until I am back at my pacemaker resting rate of 60 bpm. If I move around and keep it at 70 bpm, I feel ok. So as I type this, I am standing moving my legs rhythmically - but of course, can’t do this 24/7! But something to discuss with the doctor. Perhaps 65 bpm or even 70, is a better resting rate for me. Oh that it could be that simple…..

 

I am also wondering if the presyncope events I’ve recently been having are in reality the same as the ones I was having before I was diagnosed, but are manifesting themselves differently due to the pacemaker not allowing the HR to drop below 60 bpm. Before the pacemaker, it was dropping well below 60, eventually to 0 causing a full-on syncope, (conveniently while I was in the waiting room to see the doctor - so I skipped the doctor visit and the effort of having to convince him/her that there really was something wrong) and spent 4 days in the heart intensive care unit, where I was monitored and found to be experiencing asystole when asleep. Then the air ambulance took me to another hospital to have the pacemaker fitted. I was in a state of disbelief the whole time.

 

I am continuing my own research and have seen an interesting paper from March 2020 entitled “New Strategies for the Treatment of Sick Sinus Syndrome”, which suggests a different approach to the seemingly routine solution of inserting a pacemaker before establishing the actual cause of the condition - although I guess that this often isn’t possible. It discusses the development of biological pacemaker therapy, improved understanding of the condition and also prognosis management. So who knows what the future may hold!

 

I have a lot to discuss with the doctor, so I will take my notes and records of presyncope events, which I have going back to January. I will of course keep you updated on any events, and thank you all again for your helpful contributions - it’s so nice to not feel totally alone with this. 

You know you're wired when...

You can feel your fingers and toes again.

Member Quotes

I have had my pacer since 2005. At first it ruled my life. It took some time to calm down and make the mental adjustment. I had trouble sleeping and I worried a lot about pulling wires. Now I just live my life as I wish.