Hi, so had a bad night last Wednesday and went to get checked out at the hospital Thursday morning.Symptoms of wheezing, breathlessness, chest discomfort, lightheaded, hoarse voice, erratic beats, chest ache/discomfort, missed beats and a feeling of my heart pumping/working hard which gives me bad heads, these episodes have been ongoing since July 22 when I had pace n ablate and more so when I exert myself such as walking, gardening etc
Went to bed at 5pm Wednesday and still didn't feel great Thursday morning, totally floored and worn out so done the responsible thing and went to hospital to get checked out.
Had ECG, lung X ray and bloods taken which turned out all ok.
Cardiology checked me over and the prognosis was that it may just be something I may have to live with as a outcome of pace n ablate surgery which was carried out after years of suffering from Wolff parkinson white syndrome.
Anxiety seems to be a contributing factor (although I have never suffered at this level of anxiety in the past and don't believe I suffered from anxiety anymore than the next person pre surgery)
Really wish I had been told earlier that pace n ablate may cause ongoing issues and that lifestyle changes may be needed to manage the symptoms.
Months of not feeling great physically has impacted my life over the last 12 month thinking I was suffering from complications following pace and ablate and now to be told it may just be something I need to accept and live with.
Currently under CBT therapy, 3 sessions in and not feeling positive that it will help but willing to give it a chance.
Give up trying to find answers now, I have a life to live so suppose it's time to just accept I may not be able to do what I used to pre pace n ablate and get on with things.
Was told by the cardiologist that I am not at risk of anything serious happening so feel positive but disappointed I wasn't told that I may have ongoing symptoms coming out of surgery that may cause concern and impact my daily activities for the months ahead but suppose everyone is different.
I'm no expert in these issues but have enjoyed all your comments in previous posts, this forum has some good people that gives sound advice and brilliant support.
Thanks
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Nomis21
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So sorry that this has been the outcome for you, which is not at all what you expected I’m sure.
Having started along the pathway toward Pace and Ablate for symptomatic AF myself I realise what a huge decision this can be and one you don’t take on lightly so to be left having such symptomatic episodes must be worrying for anyone. For me, the pacemaker alone gave me such relief that I cancelled the AV node ablation.
I know little about WFW - one thing I do know is that it can be life threatening so if the Pace and Ablate has stabilised you and lessened your risk of sudden cardiac death then that is to be celebrated. Has the pace and ablate lessened that risk?
I agree that you should have been told several things, especially that the Pacemaker may not stop you feeling some irregularities of the heart in the upper chambers but will (or should) keep your pulse regular and regulated and therefor you should feel some benefit in your general wellbeing.
What I was also told was that dual chamber pacemakers - when only one ventricle is paced, can sometimes cause the ventricles to beat slightly out of sync which over time can cause other problems. I was given re-synchronisation therapy pacemaker to ensure this didn’t happen so my first question would be - what type of pacemaker was implanted?
Secondly all the symptoms you describe could be induced by anxiety but my experience (I was a psychotherapist for 20 years so saw many people with anxiety) was that there are two types of anxiety the first those people who have constant and persistent worry thoughts and perceive the their world as a constant existential threat. CBT can sometimes be quite helpful for this type of anxiety because it will offer tools to counter the instinctive and unhelpful thoughts. I never worried too much about people with worry thoughts.
The second type of anxiety is entirely physical, rarely has worry thoughts and is often triggered by an out of awareness memory of an experience which did have a real cause for anxiety but which is now resurfacing in an inappropriate and unwanted way. This type of experience, not unlike what we call PTSD, is called somatised trauma and often doctors’ will refer to it as psychosomatic - literally meaning your mind will cause you symptoms.
That is NOT how I would describe it. JeanJeanie recently posted an excellent video by Dr Gupta talking about POTS and Long COVID. Now you might ask what an earth has that to do with what I am attempting to explain. Our bodies are far more complex and intelligent than our minds but the reality is you cannot take that mechanistic approach of separating mind and body.
How I would describe it is How The Body Keeps the Score and indeed that is the title of a book by Bessel van der Kolk. The affect is AS IF you have an immediate existential threat - your Autonomic Nervous System kicks in and can cause all of the symptoms you describe simply because it is preparing the body for a fight or flight experience so moving all of the blood from essential organs - which Dr Gupta explains in his video when it causes POTS and symptoms of long COVID which JeanJeanie recently posted.
The reaction can be quite individual but more research is now directed to this type of reaction so that it may be better understood.
So what is the Take Away - learn and adopt methods of regular practice which suits you to lessen the affects of Fight and Flight because chronic F&F reaction is very corrosive longer term as the chemical mix involved in the hormones released cause very real damage to your health and it’s just a horrible thing to live with.
THE biggest Lifestyle change which will help all of us is managing our stress.
Second - good quality sleep
Third - moderate, graduated exercise and learning to pace oneself. Your pacemaker will limit your tolerance and endurance and our mind will tell us you ‘should’ be able to do…… but our body is much wiser and will cause fatigue telling you to rest, irritating for sure but necessary.
Fourth and last in my opinion, surprisingly for many people I am sure when we talk of Lifestyle, what you eat. Sugar is THE biggest antagonist for ill health but anything that causes you inflammation or any gastric issue should be anvoided and that will always be very personal. For me it turned out to be sugar and milk, general dairy I can take small quantities but not milk and some carbs so I try to eat very few carbs, although I often crave them.
WHY this is not a first step for all doctors we cannot say, it should be but as Dr Gupta explains with his treatment protocol - which is regular saline IV drip - it doesn’t make money as many drugs do.
Everyone is individual so there is no one fit all here but if you are of a curious nature, able to be your own observer of what happens when and really want to be well, good very general well-being practices will help.
May I suggest that you also bear in mind that monitoring yourself and keeping precise notes can help to highlight any patterns to your episodes which may throw light onto the underlying cause.
A long missive I know, but this information is complex and difficult to get your head around and digest.
I was sorry to read your otherwise lovely letter. Life can be tough but when the mind starts to add in its two-penn'orth with anxiety or depression, then it's truly hard to deal with. Adding to the burden is that others cannot understand the feelings involved (much as happens with arrhythmias, too). Worst of all, society is still sadly riddled with ideas of strength and weakness when it comes to mind issues, which is so completely unhelpful, even if understandable. My friend loves to say things like "I don't let life get on top of me", essentially blaming his poor wife for her anxiety woes, as if he were strong enough to prevent it happening and she not.
I think that health anxiety, and what might be called cardiac anxiety, are rather special kinds and can really magnify, even create, problems. That's my experience, and, looking back at my atrial flutter experience in 2019, I now cannot unpick how much was heart related and how much was anxiety related. I was lucky to have been given an MRI scan of my heart and that most certainly lightened the burden I was suffering so that alone highlighted how much the mind can add to a physical burden.
I wish you success with the CBT. It's given with good intention, but it did nothing much for me, and, once again, when it doesn't work, the hovering finger of blame seems to point at the patient and not the therapist or the therapy. It seems to help about 30-40% moderately to well, so do stick with it. I remember a well-meaning GP who tried hypnotism on me years back actually blamed me when it failed for somehow stopping it working. Goodness me, how one mind cannot understand another, even when medically qualified! Stop it working? I was desperate for it to work.
Maybe also get hold of one of the fine self-help books written by the late Australian doctor, Claire Weekes? They are a great comfort and gave me more help than did the "talking therapy" many years ago when a slew of life events bombarded our family.
This may sound very "out there," but do you have any allergies? I had an event late last summer with symptoms very similar to yours. After EKGs and x-rays, with an all-clear for both, a simple prescription of Azelastine nasal spray (non-steroid) cleared everything up. It's worth a thought.
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