The connection between complex emotions and our heart

Living with a chronic heart condition, particularly after a heart attack or cardiac arrest, often requires major adjustments and changes, perhaps resulting in a loss of independence.  Anxious, depressed thoughts may surface at these times, stressing the heart further.  The heart can be so affected by our feelings that it can physically change shape when we suffer emotional trauma.  You may care to look up the broken heart syndrome (Takotsubo Cardiomyopathy) to confirm this.

Cardiologists/Electrophysiologists don’t usually treat our “emotions” although my Electrophysiologist kindly referred me for psychological therapy (Mindfulness) when he told me I needed a pacemaker and lifelong anticoagulation and realised that I was struggling with this sudden news.

There is a strong connection between complex emotions (like fear, grief, anger, disappointment, feelings of anxiety or depression) and many illnesses, including heart disease, particularly if these emotions are not well managed.  Indeed good “stress management” can be just as important, if not more so than other lifestyle treatments in the battle against heart disease.

Questions on healing the heart “emotionally” following pacemaker/ICD implant is a subject that comes up time and time again, because it is such an important part of our recovery.  I think discussion here would be immensely helpful when so many of us suffer from these negative and harmful emotions.

May I ask how you “felt" when you were told you needed a pacemaker or ICD;  or how you “felt” when you woke up after emergency surgery and learnt that you already had a pacemaker or ICD?   Did it stir up difficult questions and emotions for you, or did you feel a sense of relief and hope for the future?


19 Comments

Feelings

by Lavender - 2023-07-27 14:24:36

For me it followed the stages of grief. 

According to Kübler-Ross, the five stages of grief are:

denial

anger

bargaining

depression

acceptance

I was told in 2010 (after an ekg for finger surgery) that I had left bundle branch block. I was told it might come and go but for some people, it leads to a pacemaker. I was in

DENIAL

I figured they were wrong. I was healthy active and strong. 
 

In 2019, my heart stopped during being brought out of anesthesia after laparoscopic gallbladder surgery. I was told I might need a pacemaker in the future. I was 

ANGRY

How could this young aide to my cardiologist dare say this!? I told her that pacemakers are for old people. She explained that anyone can get one and that I was getting older. 
 

Nine months later, the intermittent fainting started. It lasted six months. I went to six different specialists with no one finding a cause. All heart tests were normal. I didn't faint every day so I was 

BARGAINING 

with myself to eat better, walk more, and "if I just stop this, add that, I can somehow control this". 
 

As time went on, I had

DEPRESSION 

I knew it was probably my heart and I did not want a pacemaker! When the 30 day monitor caught the rare ventricular standstill, I reluctantly went to the ER. I was angry that my boyfriend saved my life when I had the 33 second pause. (He doesn't know CPR-accidentally restarted my heart with an unintentional precordial thump.) I knew what was coming and didn't want a pacemaker. I stayed depressed through submitting to the pacemaker implantation and for the next many months. I felt old, tired, sad, alone and not wanting to bother friends or family. I had no one to talk with who understands. 
 

THEN I FOUND PACEMAKER CLUB! I read it for over a year before joining. I learned so much! 
 

About seven months into having the pacemaker, I felt better and got to 

ACCEPTANCE

I would be dead without my device. My heart had reached its expiration date. My sons and grandchildren need me. I'm not so friendly with my pacemaker that I want to name it🤣 But, I accept it.

 

how i felt

by new to pace.... - 2023-07-27 15:03:32

I was told when i saw GP in June for my annual wellness, that i had an abnormal heart beat.  then i saw the cardiologist in August for a Stress Test, wore a  Holter monitor.Turned in the Holter on Wed.  Was called on a thursday to tell me that i needed pacemaker and the Ep's office would call to schedule an appt.  I called the EP's office  and was told they did not have the information yet.  I said since i am on the phone why don't we get started with my information.  Lucky i did that as was able to get in to see him Friday afternoon.  When he not only told me i needed a pacemaker , but i should also have a watchman put in. he told me not only did i have a slow heartbeats( which i knew already), but i had pauses.   Needless to say i did not know what to do.  Had me sit and watch the video of the Watchman, was not thrilled with what i saw.  As to the pacemaker only knew one other person who had one.                                                                 I was scheduled to fly out on Sunday for a week.  Contacted my acupuncturist to ask what i should do.  She said to cancel my trip.  I told the dr. i wanted it done at the public hospital.  He said not till the middle of September but if i wanted could have it done on Wed. at another hospital.   I knew i had a problem as after the ekg done in June.  I was away in July when i walked from the hotel to the conference center could only do it 3 times in row, told me i had a problem.  At that time had wondered why the GP did not say to me i should rebook my appt with the Cardiologist and not wait until Aug.  for r a 3 year check up.               Since it happened so fast did not have any time to be concerned.  Once i  understood  that i would have a faster and regular heartbeat and no pauses.  I felt so good as no more stopped walking and falling.

new to pace

 

Not that long ago ...

by John_Locke - 2023-07-27 15:26:41

I only received my pacemaker weeks back, but let's start at the beginning.

I'm in my early twenties, and for reasons not very interesting in themselves I ended up at the cardiac ward of a hospital after a bacterial infection and complaining of chest pains. I was clearly the odd one out at the ward, which was mostly full of older men asking what I was doing there. The infection was taken care of (pro tip, don't ignore severly ingrown nails for months), but as I was on monitoring during the stay, they picked up my AV block. An echocardiogram and stress test followed and I was told it's just one of those things, nothing to worry about, we'll keep an eye on it.

I wore a holter monitor for a day each year for a while. Mostly they didn't say much. Yes it's still there, no there's no need to do anything, come back again next year. Once they asked what I was doing at a particular time - which was not much, sitting down in a sofa. I asked why they asked - and apparently my heart had stopped for 5 seconds, I had not noticed.

The yearly checkups stopped, or I stopped paying attention to them - I can't remember, I was young and healthy. Years later I moved to the UK and after a lot of reluctance and procrasternation had to register with a GP. The topic of my AV block came up, when did I last have a checkup? They suggested I should have one done and referred me to a cardiologist.

24h ECG again, same thing - yes it's there, no there's nothing we need to do right now. Come back if you have any new symptoms.

I stopped doing the checkups. I was youngish and healthy. I could run, I could go to the gym, I could have a big night out and go to work the next morning and I was fine, just fine. I did feel my occasional "big beats" that I associated with the AV block but that was nothing new. I never fainted or blacked out.

Fast forward to recently. I'm in my early 40s, still youngish in heart health circles, still healthy, but now getting palpitations randomly. It's probably stress, they all say, nothing to worry about, but maybe get checked out just in case. I get a 7 day ECG, a MRI, a fresh echocardiogram. I know that I'm fine, I keep telling myself, though those feelings of skipped beats had started becoming more frequent followed by a general sense of unease. Just stress. No syncope, no blackouts, I can run 10k just fine.

The test results are in, I meet with the cardiologist. Structurally my heart is fine, exceedingly normal in fact. Electrically, yes, I have some problems that are "moderately concerning". I ask if it's still an AV block 2nd degree and he says yes. Type I? He says yes, though there are "some more serious episodes". I suggests that I speak to an EP, to talk about my next 10-20 years, no suggestion of urgency.

Weeks later I meet with my EP. He shows me a heart rate of 25 at points during the night though he's not "too worried" about that. He tells me that the more "interesting" thing are episodes that happen during the day and shows me the ECG. I see five episodes on the screen, almost one every day for when I wore the monitor, where the ventricles are silent for more than 5 seconds. He tells me the risk is relatively low, but that these could lead to a pause of 10 seconds, or 15, or longer. He doesn't spell out what "longer" means but it's pretty clear, he also says that I'm in my prime, and let's keep it like that.

I realise for the first time that there's a possibility that this risk is not much more or less than it's been for many years, maybe even back to when they first picked this up, but that they didn't think at the time that the risk of having a pacemaker for life was worth it. I am confronted for the first time with the realisation that I might just stop existing, without warning - no heart attack with a fighting chance to survive, just a poof and I'm gone. Somehow that feels worse.

That's a long prelude up to what you're asking for, but how did it make me feel?

Scared. Betrayed by previous healthcare professionals that had led me to believe that it was just one of those things and nothing to worry about. Relieved in a way as I always knew at some level that a pacemaker was in my future and I didn't have to repeatedly lose conciousness to get one. Desparate to get it done now, to have it over with. I felt an increased respect for doctors having to choose the lesser evil, that all treatments have their own risks and downsides.

A&E One Day - Pacemaker the Next

by Fantasyfanuk - 2023-07-27 19:26:19

It is great to be asked about our feelings around having a pacemaker and afterwards. My story is that I had been unwell on and off for years, feeling awful suddenly, unable to get enough breath and as if I was going to faint. No medical professional had seemed interested or worked out what was going on, although I had ECGs and a portable monitor for a week. I didn't feel like anyone believed me and I just thought I was getting older and was generally unfit. I made myself run for trains/buses and walk home up a steep hill to try to improve my fitness and in retrospect I am amazed I never collapsed. One day at the school I worked at I felt so ill that I was holding onto the wall as I went along the corridors to stop me keeling over. I had three bosses who were all out so I felt I had to stay there. I managed to get the last appointment at the evening GP clinic at 7pm. When i got in to see the doctor, he took my pulse and blood pressure, said when I was standing up he couldn't find a blood pressure at all and called an ambulance. I was so relieved that he believed me and he was very caring which made a huge difference in keeping me calm. He rang my partner who was working 100 miles away and the paramedics were great too. They gave me medication which didn't work though and took me to A&E. I was put on a monitor for a few hours and eventually was admitted for further monitoring. I could see that sometimes my heart rate was normal and sometimes down to the 30s. I was worried but thought at least I'm being checked over now properly. The next morning I sat up, felt dreadful and lay down again as 6 staff rushed into the room! My heart rate had dropped to 22 and I was told then that I would be having a pacemaker that afternoon, which was a huge shock. No time to process anything or ask any questions, I was given the British Heart Foundation very small booklet on pacemakers and that was it! I knew I was very ill though so just went along with everything. After the procedure, they initially wanted me to go home quite quickly but I was so shaken by the suddenness of it that I stayed overnight. I was quite frightened and needed to be there to feel safe I think. I was ill for quite a long time afterwards, which was difficult to deal with because everyone had assured me I would feel better immediately and I didn't. I had some counselling to help get over the shock of it all. I couldn't go back to work for 5 weeks and really deteriorated with breathlessness on the slightest exertion.  My then cardiologist told me I was a mystery! Eventually I got the GP to refer me to a bigger hospital, had lots of tests and the dual lead pacemaker was changed for a CRT-P device, which has helped me feel a great deal better, physically and mentally. I wish someone had diagnosed my problem properly years earlier, I wish all staff were as kind as the original GP, the paramedics and my current cardiologist and I am so grateful that the technology helps me live every day. 

Lavender, New to Pace, John

by Gemita - 2023-07-27 20:13:26

Lavender, thank you.  It is so helpful to have our emotions placed in such order but of course our emotions during periods of grief are far from orderly or follow a specific pattern.  For me emptiness and depression usually come first during a period of grief.  I don’t go through anger, although I know it would probably help me.  I didn’t realise you had seen 6 different specialists to try to find a cause for your symptoms.  I can relate to this since with electrical disturbances they have a habit of just turning up for no apparent reason and can disappear just as quickly.  I had right bundle branch block as well as sinus node disease.  I am glad you are with us and you have accepted your pacemaker.  You have come a very long way and I am sorry you felt so alone when you most needed help.

Update: Lavender I was interested to read about Kübler-Ross, and her five stages of grief.  Acceptance is a strange emotion, since I don't feel we ever accept we couldn't have done more to stop something from happening, although with time we do come to terms with our grief, loss, don't we?

New to pace, thank you. I am glad that you realised that you needed your pacemaker before you had any serious falls and I can completely understand your reluctance to accept the Watchman device for stroke protection.  I wouldn’t want it either because I feel anticoagulation is the gold standard to prevent strokes although I know you prefer natural remedies.  I laughed when I read you had contacted your acupuncturist for advice although it didn't surprise me.  I am glad you were able to come to a decision quickly about your pacemaker since you clearly knew it was needed.  I found myself sitting on the fence for far too long, more so over taking the anticoagulants than accepting my pacemaker.  My cardiologist/EP said he couldn’t treat me safely without anticoagulation, so I reluctantly agreed to take a medication that I felt could potentially cause internal bleeding. I was truly petrified.   Fortunately after 5 years on Edoxaban 30mg, no sign of any trouble.

John, thank you for your contribution.  You catalogue of events leading up to your pacemaker unfortunately is all too familiar.  I remember the time it took before my electrical disturbances were finally diagnosed and before my doctors decided to act.   AV Block can occur during an acute illness and then resolve afterwards in some cases, although with electrical disturbances once they start, they may be difficult to stop.  I can understand the frustrations you went through before someone finally decided to put in a pacemaker.  I guess they thought you might grow out of the pauses but when you didn’t they made a decision.  I felt disappointed in some of my doctors too initially when they tried to tell me there was nothing to worry about, when I felt so poorly and had intermittent syncope which was never caught.  Yes even a pacemaker implant carries a risk for complications now and in the future, so our doctors have to make sure it is indicated.  Relief comes from having made a decision I suspect.  Your pacemaker is there for life now and we just have to optimise/personalise the settings for you. I wish you well John

acupuncture versus cardiologist

by new to pace.... - 2023-07-27 20:54:17

Gemita thanks for your comments.  My acupuncturist cares more for what is going on with my heart than the cardiologist.  As she has experience as a diagnostic  Dr.  So she has me doing more blood tests. Such as C-Reactive Protien cardiac, Ferritin.

new to pace

Life was a breeze...

by 73Rawk - 2023-07-27 22:01:21

In my case the suddenness of having my 'flux capacitor' installed on top of trying to reconcile why my heart was trying to kill me out of the blue, took me to all stages of grief: except anger. After my second arrest in hospital, the decision was made to begin my enhanced existence for me by some very worried medical staff. There was no discussion on the topic given that I wasn't in a state for a full discussion or reading a brochure. Prior to implantaion I was advised that either way I'd be walking out of hospital with and ICD and or Defib but I still wasn't quite prepared for what transpired. I'm back to relative normality since February but there are flashbacks to the incidents, the feelings of helplessness when they occured and dealing with the very real possibility that I may not have been here. There are little pangs of anxiety attached, which I've noticed are less and less now but subtle reminders all the same. 

I had a week in hospital betwen on SCA's and had a lot of discussion with my wife about our feelings and how we were going to move forward with life, not dwell on what could have been. She has been amazing throughout this journey, having shed tears together and separately which is something I've not been prone to do in life (I get weepy now watching sad TV/movies). I know not everyone has the benefit of a strong support network which can make all the difference in your healing. I'm eternally grateful for mine.            

Fantasyfanuk and Rawk

by Gemita - 2023-07-28 02:50:45

Fantasyfanuk, thank you for your contribution.  I see you initially had a one off ECG and holter monitor and nothing of significance was captured at the time and you were made to feel that nothing was wrong which sounds pretty typical.  Because of this you pushed yourself even more thinking it was due to being unfit.  I know that small British Heart Foundation leaflet so well too.  I am sorry your first pacemaker didn’t help as expected and that you had to be referred to a main hospital where you received an upgrade to a CRT pacemaker.  There is no doubt that adequate monitoring is the key to finding the source of any electrical disturbance, but unless we have frequent or even permanent monitoring, substantial pauses, syncope and dangerously slow or fast arrhythmias can be missed, sometimes with potentially devastating results.  You sound as though you had developed signs of heart failure from not having any of this picked up earlier.  I eventually had to have a Reveal Linq implant permanent monitor because my intermittent syncope was never detected with occasional monitoring.  I am under a main London hospital now and what a difference it has made.

Rawk, thank you for your contribution.  You have described your emotions so well and what my post is all about.  Having a caring partner can make all the difference and I see that you have had a heart to heart chat with your wife about “what could have been”.  I would like to re-phrase this to read “what will be” in the future since there is every chance, at your age, that you will make a good recovery.  Having a cry can help me too when things get tough, when there is no other way to release my inner turmoil.  Keeping everything inside is not healthy and we have to find our own way to release these difficult feelings.  I am glad you were able to share your experience with us.  It took courage to do so.  I wish you a safe and happy journey ahead.

Heart-felt experiences

by Gotrhythm - 2023-07-28 14:34:57

I denied needing a pacemaker for a month, until I wound up in an ER. 24 hours later I had a shiny new St. Jude.

But my discovery of the heartbeat by heartbeat relationship between the heart and the emotions/feelings began when I came out of the anesthetic. See, I felt good. Wonderful. Bright, clear-headed but serene. I'd had anesthesia a few times. I knew this was't the typical response so I figured this time, I had been given some really excellent drugs. I drifted back to sleep.

After a few hours, the anesthesia wore off completely and I woke up fully. I felt wonderful. That same sense of clarity and serenity, and really, really good mood continued into the next morning. I'm still thinking I need to find out what those drugs were, when I look in a mirror, and my cheeks are pink! My skin tone clear. My eyes bright. I look rested. I hadn't waked up feeling rested for a couple of years.

That's when it occured to me to even notice my physical feelings. For years, if I bothered to notice it, I could feel my heart beating. Always. Now, where that constant thud had always been, there was nothing. No, not nothing. Just this easy, spacious-feeling serenity.

For 30 years or more, I had studied meditaion methods, several schools of yoga, and even biofeedback training, and I had become proficient, and remarkably self-aware, but still, heart-slamming anxiety could hit me out of the blue and with no cause that I could discover.

And then, I wake up with a pacemaker in my chest. And there it was. Serenity. Not the idea of peace, but an actual feeling of peace.

That was 13 years ago. Fortunately there have been several extened periods when it was possible to tune the pacemaker so that I enjoyed a really regular heartbeat. I've had a chance to observe the feelings/heart/emotion interplay when it's going right and not.

I've pondered all the "heart" words for emotions, and noticed how often I can even put my finger on the arrythmia that's going on when I feel them. For instance, depression for me, is a heart rate of 60. It vanishes completely at 70 bpm.

I have wondered how many others have been diagnosed with anxiety or panic attacks. And I've wondered if those who experience anxiety after a pacemaker are partly reacting to some different way their heart is acting.

Serenity

by Gemita - 2023-07-29 03:04:53

Gotrhythm, it appears your post implant experience was “remarkable” for immediate benefit from your pacemaker and/or your IV meds.  I cannot explain your total “serenity” in any other way?

How many of us can say we felt serenity waking up from a procedure where our bodies had been traumatised from the feeding of leads into blood vessels, the fixation of lead tips to heart tissue and the start of pacing?  I recall my heart went into overdrive post implant and my hospital monitor was bleeping all night, disturbing patients and night staff.  I felt as though I was going to take off in all directions with a fast, unsteady heart rhythm.  New arrhythmias developed at that time too.  My heart was choatic.

It was interesting to hear that despite your self awareness and control of your thoughts, you could still experience anxiety without apparent cause.  I think I know what you mean.   I can experience a sudden “sinking” feeling in my epigastric area prior to the start of an arrhythmia.  However, with a sudden change of heart rate and rhythm causing poor blood flow, I have no difficulty in seeing how this could cause symptoms of anxiety.  When the heart is out of rhythm, we are out of rhythm and it affects everything we do and how we “feel”.   Give me a steady resting heart rate of around 70 -75 bpm and I will show you what I can achieve.   Just like you, as my heart rate falls, I may experience difficult symptoms/emotions.  I note you have depression with a heart rate at 60 bpm, vanishing at 70 bpm.

We both have good self awareness and can put our finger on the exact heart rhythm we feel when it is actually occurring. This is a wonderful gift and I hope we never lose it.  But self awareness comes at a price too and we will feel more in the way of symptoms as we “absorb” the rhythm of our hearts and soak up everything around us.  A heart out of rhythm for whatever reason is indeed a trigger for many difficult emotions and illnesses.  Thank you Gotrhythm for your valuable contribution

Gotrhythm

by Lavender - 2023-07-29 08:17:35

I've been thinking of this comment that you made:

"I have wondered how many others have been diagnosed with anxiety or panic attacks. And I've wondered if those who experience anxiety after a pacemaker are partly reacting to some different way their heart is acting."

Which came first-anxiety or the pacemaker? I know that for me-I was a very optimistic carefree person who kept positive inspite of all the chaos life brought. it didn't stop me from going forward in faith. 
 

Fainting for six months rattled me completely-not at first-because I believed that the doctor would solve it quickly. When the 24 hr monitor found nothing, I was sent down the rabbit hole of specialists testing everything with no luck. Surprise drop attacks made me fearful to be alone, fearful of driving, fearful to fall asleep. Waiting three months -all the while fainting- to see a neurologist to do EEGs, an endocrinologist order urine testing, insulin testing for days, having a gastroenterologist check for gastro issues, going for vestibular screening and therapy which solved nothing, having the cardiologist do echos, stress test, and saying it's not my heart, being sent to a nerve and muscle specialist for testing...with no answers and fainting 26 times during that six month period...you can believe I developed severe anxiety.

I was trying to cope by speaking with a psychologist, doing yoga, meditation, zoning out with music through headphones, and praying. 
 

I stopped driving, tried elimination diets, and cut off "well meaning friends " who blamed me saying I was causing the fainting by being so anxious 😬!

When I fainted dead away in a smaller, rather empty store with no one seeing me, I had a near death experience and then came to on my own...unnoticed and unassisted. I now got ANGRY!! I called the neurologist who told me to insist on a 30 day monitor. The cardiologist office had refused this months before. They kept telling me I was just ANXIOUS!  

I called my PCP and told him that I would not be intimidated and demanded a 30 day heart monitor. (I had been told by his partner in practice that I was just ANXIOUS and to go back to bed after the very first fainting episode months prior!)

Ten days into wearing the monitor, I had the big event which finally caught my 33 second pause-ventricular standstill was finally diagnosed. I had my second near death experience and got a pacemaker within two days. 
 

Anxiety lingered a long time because my brain was in danger mode. Leaving the hospital with a 70 bpm heart made me feel like I was anxious. I couldn't stand it-it was like my heart was racing and I had a couple pots of coffee. I was so used to bradycardia. I wanted my slow beat back. When they turned me down to 60 bpm after 5 weeks to allow the leads to settle in, I was greatly relieved.
 

I'm ok now and ignore my heart beat pretty much except for the PVCs-which are much much less. I can drive, be alone, do anything. 

So the anxiety came before AND after the pacemaker. It changed my life and my feeling of safety. 

 

Lavender

by Gotrhythm - 2023-07-29 14:22:01

Ahh! You relate exactly the experience I suspected could happen. ** I love being right.** Everyone knows the changes in heartrate and intensity that come with fear. If the heart began producing those changes out of context, why wouldn't one assume the problem was "anxiety."

In your case, add the fact that the arrythmia could cause unconciousness, and the only rational response would be fear/anxiety. If you knew you could possibly faint "without cause," of course you were afraid to drive. Well, duh. Driving was a bad idea! And then to be told you were fainting because you were anxious--the implication being that you were doing it to yourself. That must have been a dark, dark time for you.

I think it's interesting that you started to turn things around the time you fainted and didn't go further down the scared-path, you got angry and used the energy of anger to blast some obstacles out of the way. Maybe it's the writer in me, but I'm always interested not just in turning points but in how turning points happen. I'm thinking you've got some powerful will going for you, and some powerful prayer connection,too.

About your experiencing anxiety (after you got your pacemaker) with because you had a faster heartrate--I think that happens to a lot of people. You articulate it very well. Also the fact that your old fear of driving was still there even after the pacemaker and danger of fainting was gone. You had to un-learn it when it was no longer a rational fear.

Gemita

by Gotrhythm - 2023-07-29 16:04:29

When the heart is out of rhythm, we are out of rhythm, and it affects everything we do and everything we "feel."

Well said! So well said, it should be emblazoned on a banner in every cardiologist's office. Or something. Maybe everywhere. It's one of those things that's so obvious that it's easily overlooked, and practically never stated.  And I think it's one of those things people with arrythmias can't really understand until we get a pacemaker and find out what a regular heartbeat feels like. It certainly never occured to me that feeling my heart beating in heavy thuds all the time might be abnormal.

I know my experience of feeling wonderful immediatley after pacemaker surgery is unusual--at least among Pacemaker Club members. I think it was possible for me to feel good in part because I was in otherwise excellant physical health and condition. (That's also what made a "psychiatric" explanation of my symptoms seem reasonable to doctors I consulted.) My body was much more able to cope with the stresses of the procedure.

I also think I was able to experience it because I had done a lot of self-exploration and developed skills at controlling physiogical responses. And of course, I had done the work because I was looking for exactly what I had just found. I remember lying there in the hospital room thinking, Oh. This is peace. I was already skillful at thinking peaceful thoughts. I just finally had the feeling to go with them.

You are right that being self-aware can result in a hypersensitivity that can make it hard to sort out when a problem is serious and needs attention, and when it's just a feeling. It becomes more important to seek out objective data, and to learn to understand and interpret it--something you do superlatively well.

Lavender and Gotrhythm

by Gemita - 2023-07-31 09:19:09

Lavender re-reading your posts here and others’ posts, just re-confirms the frustrations some of us have to go through to get a confirmed diagnosis of electrical disturbances of the heart requiring pacemaker and/or ICD support.  I do understand our doctors need confirmation before they can safely step in to help us, but It is deeply disturbing that so many of us have to go through test upon test to prove that are symptoms are real, not imagined, nor anxiety related.   Only long term monitoring can give us this evidence and peace of mind. 

I feel where indicated by worsening symptoms, we should all be offered longer term monitoring at the start of our journey with electrical disturbances of the heart.   How many tests and specialists could have been avoided if the appropriate monitoring had been offered to you from the start?

I was initially told by a rude cardiologist that “it was all in my head” and that he wanted to see something more exciting on my ECGs before he was prepared to believe I had an arrhythmia like Atrial Fibrillation.  Yes, those were his words after a 24 hour holter monitor only saw brief runs of SVT.  We all know the limitations of 24 hour holter monitoring, or of a minute long ECG recording to pick up an “intermittent” arrhythmia.  Arrhythmias rarely show up during the period of monitoring.

I kept pushing for longer term monitoring and was finally offered a Reveal Linq implant monitor which stayed in place for 3+ years.  It confirmed many atrial and ventricular arrhythmias often with a rapid ventricular response rate and substantial sinus pauses whenever I returned to normal sinus rhythm.  These correlated with my syncope episodes which I had recorded in my diary.  Finally I had the proof I needed and quickly proceeded to an EP Study with the intention of fixing a date for a pacemaker, and an AV Node ablation.  During the EP Study I was in AF for the entire procedure which could not be stopped with overdrive pacing or with 3 cardioversions until IV anti arrhythmic medication (Flecainide) was given.  After the EP Study a junior cardiologist had the cheek to say, well you were in AF at the time of your Study so we know now you definitely have AF!   I was so angry after struggling to be heard for several years.  Is it any wonder why so many of us become anxious, depressed and fearful that nothing will ever change when we have to go through all this unnecessary suffering when long term monitoring would have made such a difference if we had been offered this at the outset? 

Gotrhythm mentions turning points and how they happen.  I am not sure that I would be able to pinpoint any specific turning points in my life when I have made changes or taken direct action to help myself.  I am the sort of person who tolerates a problem until it almost breaks me (not recommended I know).  I usually have to reach this stage before I take action to change something. 

I don’t cope well with change, especially health changes.  Having to face multiple arrhythmias, heart procedures, beta blockers, anti arrhythmic medication and anticoagulation has been a difficult, disruptive experience, more so than the fear of having metastatic cancer in the early nineties.  When my heart is out of rhythm for lengthy periods I cannot “effectively” live my life which is why I will never stop looking for better treatments

Validation

by Lavender - 2023-07-31 11:37:49

Even now, reading this entire thread and the discussion back and forth, brings such validation! I too tolerate difficult situations a long time before I take action. I finally realize that this will not get better, and I cannot continue the way it is so I fight back harder.
 

I have always said that I get sad first then mad. Being mad works better for me because that energy goes to being firm with people that are not bringing me comfort. 
 

Gemita said, "How many tests and specialists could have been avoided if the appropriate monitoring had been offered to you from the start?"

Exactly!  Many of the tests were painful, expensive, totally unnecessary and unhelpful. I was so angry that I confronted my ex cardiologist with that very question!

When my heart stopped in 2019 during gallbladder surgery, even that surgeon said that he couldn't believe that my ex cardiologist didn't order an EP study. 

After a year with the pacemaker, at my ex cardiologist visit, I told her that I was disappointed that I had to endure 26 events of fainting, and six months of six specialist testing and it was all unnecessary!

She told me that I had yelled and wasn’t respectful and I shouldn't think that she’s wrong. I had calmly but firmly spoken.

I explained that a thirty day monitor should have been used sooner. She said it may not have found the arrhythmia. I said it was intermittent but often. 

Then she said it was water under the bridge and hugged me and said that we had "kissed and made up". 

What an insensitive statement! I never saw her again because she left town suddenly for another practice. GOOD RIDDANCE!

Gemita, I am a softy and used to be very trusting of everything and everyone. I am older and wiser now. I'm checking things out more with second opinions if needed. As you know, many of us have endured much anguish both mentally and physically. We have to self advocate...politely and with respect but without feeling intimidated. 

Anxiety

by Shaun - 2023-08-02 09:50:39

My pacemaker implant was so sudden that I didn't have time to think about it beforehand or analyse my feelings, however I have experienced what I think of as “anxiety” ever since the pacemaker implant.

The first time in my life that I experienced anxiety was nearly 40 years ago while recovering from an operation to remove a kidney during which the anaesthetic caused some pretty weird “out of body” hallucinations. I experienced anxiety episodes for a period of about 2 years following the operation after which they ceased completely, that is until about 9 years ago when I received a pacemaker implant.

Apart from passing out once in my sleep about 1 year before my pacemaker implant I’d not had any prior symptoms indicating that there might be an issue with my heart rhythm. However, in the 24 hour period leading up to my pacemaker implant I passed out about a dozen times either in my sleep or as I was falling asleep, so the pacemaker implant (for SSS Bradycardia) was very sudden indeed and ever since I’ve been experiencing anxiety episodes.

I can go for many months without any anxiety episodes whatsoever then I can experience several episodes a day over a period of a few weeks after which they disappear again. I can usually tell when the anxiety episodes are more likely to occur, it's a particular feeling which I can’t really describe so I’ll call it “brain fog”. When an episode occurs I might be focusing on something arbitrary whereupon a small element of self doubt occurs which causes a very familiar feeling to wash over me. Again, I can't really describe this feeling other than to say it feels very familiar and makes me feel somewhat disconnected from my senses. It only ever lasts for about 10 seconds or so and when it has passed I feel a bit clammy and disorientated.

I have no idea what triggers the episodes. I’m a person of faith and so I'm not fearful of death when my time comes (I trust in Jesus’s mercy). Following my experience of repeatedly passing out just prior to the pacemaker implant then possibly passing out is something that plays on my mind a bit although I’ve not passed out since receiving the pacemaker. I also wonder whether there might be certain in-perceptible events in my heart rhythm that may trigger the anxiety. The possibility of dementia is also something that plays on my mind a bit because my mother suffered from vascular dementia. Finally, this may sound rather odd but over the past few years, it's almost like my anxiety has become somewhat seasonal in that the anxiety episodes seem to be more prevalent during the months of June and July.

Shaun

by Gemita - 2023-08-04 02:22:15

Shaun, how very kind of you to respond to my thread and to describe your particular anxiety.  

I have also been a fainter for as long as I can remember and this always triggers fear that something bad is about to happen.  I have swallow syncope due to an intermittent high pressure oesophageal motility disorder (muscle contraction problem), as well as arrhythmias, and one seems to trigger the other.  Brain fog has really hit me recently too and I don’t know where it is coming from.  Having frequent runs/episodes of Atrial Fibrillation and other irregular heartbeats isn't of course helping and definitely causes  fatigue, so I am partly putting the brain fog down to these “irregular” arrhythmias.

I am very sorry to hear that you also experienced episodes of syncope probably due to your heart rhythm irregularities and that you have been experiencing anxiety episodes since your pacemaker implant.  I have lots of arrhythmias with a very rapid ventricular response rate at times and these triggered syncope prior to my pacemaker.  Following implant of my dual lead pacemaker, my arrhythmias are better controlled.  I still get the occasional pre-syncope experience but thankfully no actual faints anymore.

You say, “I also wonder whether there might be certain in-perceptible events in my heart rhythm that may trigger the anxiety.  The possibility of dementia is also something that plays on my mind a bit because my mother suffered from vascular dementia”.  As a matter of fact when in an arrhythmia like Atrial Fibrillation, it does cause feelings of anxiety because of the "irregularity" of rhythm.  When our heart rhythm is so out of control, we can "feel" out of control.  Afterall, both heart rate and blood pressure can fluctuate rapidly during an irregular rhythm disturbance like Atrial Fibrillation and this will cause instability, weakness and many other symptoms.  There is no doubt that Atrial Fibrillation can be a risk factor for a stroke and could cause vascular dementia which is why many of us need to stay on anticoagulants for life.  

I hope for the very best for you Shaun.

Gemita

by Shaun - 2023-08-04 09:45:51

Thank you so much Gemita for such a complete and informative response to my post. I was going to thank you privately but then I thought maybe there are symptoms here that others might find interesting and can relate to.

My syncope episodes (my wife said it was closer to 18 than 12) during the 24 hours that preceded my pacemaker implant were caused by 40 seconds of 5+ second pauses which were happening EVERY time I fell asleep. Since receiving my dual lead pacemaker I've not experienced another syncope episode, so in that respect my pacemaker is managing my arrhythmia (of course the pacemaker can't manage extra heartbeats).

Nobody has ever mentioned Afib to me before, however my yearly pacemaker interrogations sometimes highlight a few episodes over the 12 month period where the heart rate is elevated for a few seconds, but nothing that concerns the Electrophysiologist. This year there were two instances where my heart rate rose to about 190bpm for just a few seconds; I later checked my cycling log and this did NOT correspond to when I was exercising. I do notice on occasions that my heart rate speeds up unexpectedly, but a quick cough seems to fix that and so it never lasts for more than a few seconds (note: the Electrophysiologist does not seem to notice these little episodes in the pacemaker log).

The Electrophysiologist did suggest that I keep a log of when I get anxiety episodes so he can see whether they correlate to any anomalies highlighted by the pacemaker interrogation, unfortunately though my brain is not sufficiently organised after they happen to record the date / time; often the disorientation means I'm not even sure what day of the week it is. Anyway, I've agreed from now on to let my wife know when they're happening so she can record the date / time. By the way, I call these "anxiety" episodes but they don't worry or panic me. In fact quite the opposite, often I'm quite relaxed and sometimes rather curious about the weird feelings.

Another thing I sometimes get is postural hypotension and as with the anxiety this also happens periodically over a given timeframe then disappears again for months on end (note: my blood pressure tends to be on the low side anyway, but not normally in the hypotension region). I'm not sure if the postural hypotension and anxiety episodes are grouped together into the same approximate timeframes, but one thing I was wondering is whether dehydration might be a factor. The postural hypotension episodes do seem to be more prevalent during those weeks when I'm cycling more regularly and I know I tend to push myself quite hard while cycling and end up sweating a lot. I always drink plenty of water, but of course hydration is about more than just drinking water; maybe I should look into electrolyte drinks.

I'm not on any medications and nobody has ever mentioned to me about anticoagulants, but maybe that's because the Electrophysiologist has never flagged my symptoms to the cardiologist. It might be worth me reaching out to my GP to see what he thinks.

Once again, many thanks to you Gemita.

Shaun

by Gemita - 2023-08-05 02:11:14

Hello Shaun, I wish our posts could be bumped to the top of the message board for all to see when someone comments, but this site doesn’t work this way.  

I think it is a very good idea, without being too obsessive about it, to keep a diary of the times, dates, you experience anxiety to try to see whether there is any correlation between anxiety and an arrhythmia.  If there is a correlation, your EP will be in a much better position to target the particular arrhythmia responsible, or to look at how or why the arrhythmia starts. 

The pacemaker ECG can often show electrolyte disturbances for example, and yes dehydration can definitely cause this, so needs watching especially if you push yourself at times cycling during the hot summer months when apparently your anxiety is more noticeable.  Perhaps there is a link.  

I would try not to worry about AF specifically since any significant AF episode would most definitely be picked up by the pacemaker, particularly if the episode passed the parameters (in terms of speed and duration) set up by your EP for its recording and storage on ECG or in any logs.  Also you appear to be young and healthy, with no significant heart disease requiring medication, so even if you have brief runs of an atrial tachy arrhythmia, this may be perfectly normal and wouldn't necessarily cause your EP any concern at all.

I think having a word with your general doctor might be helpful to get some periodic checks of your electrolytes, thyroid function, perhaps other blood checks too.  Postural hypotension can be helped by good hydration.  I don’t drink nearly enough water and my blood pressure can be extremely low and I am very prone to dizzy spells and simple faints as a result of this.  I never learn my lesson!

Stay well and happy monitoring without too much concern.  You sound extremely healthy to me but we want to keep it that way, don't we.

 

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I had a pacemaker since 2002 and ever since then my life has been a total blessing.