Side Effects or Arrhythmia?

[MeganMN]

How do you discern what is a side effect of a new med vs a side effect of arrhythmia? I feel absolutely terrible. I feel like I am 100 years old, am fatigued, feel super lethargic, and short of breath with exertion. My legs ache. I can't sleep. I feel super, super worn down and just physically unwell. I am normally a health, fit, active person and this is terrible. But since the ablation on May 10th, I have felt awful. I tried Bisoprolol again and actually felt okay, but still had terrible bigeminy and tachycardia. I have been on the Propafenone and have felt seriously awful. But I really can't tell if it is the Propafenone or the continued Bigeminy and Inappropriate Sinus Tach. I just can't tell. I just know that I feel absolutely, unbearably awful. I literally feel like I could just fall over and die from exhaustion. Ugh.

[CDreamer]

I am so sorry you feel like this, we jump to ablation believing that everything is going to be better and for some it is, for others more issues arise.

You ask a really difficult question to answer. You are still recovery from Ablation so very early days which is a factor. The new arrhythmias - tachycardia + Bigeminy in themselves will make you feel like that. The drugs alone can make you feel like that. Unfortunately some people experience other arrhythmias following ablation.

Everyone responds very differently to meds but when I was on Bisoprolol I had no tachycardia or bigeminy and I felt exactly as you describe.

The good news was that for me the ectopics and tachycardia which developed following 2 ablations, almost back to back, didn’t last, although it took something like 9 months to stop entirely. I had to stop the Biso & Flecainide 12 weeks following ablation as I developed contraindications to them, my body was telling me that months prior that the drugs were not helping but many people find they help so we are all different.

My view has always been that if the drugs are not helping you, why take them? I felt better after stopping Bisoprolol and Flecainide which I was prescribed following the ablation but I had to for very good reasons and everyone responds very differently.

Instead of drugs to lower heart rate I used breath and meditation and relaxation and gentle exercise. It meant making adaptations to every day life and avoiding stressors but it worked. One of the biggest lessons I learned is that life is too short to do things we don’t enjoy so distraction, doing things that pleasure - releases endorphins which in turn counteract stress hormones. Music, art, films, watching nature - focus on joy and thankfulness may sound arty farty, but it actually works if you take your time and stop rushing the healing process - which is far more than just taking a pill.

I would suggest that you return to your Arrythmia clinic and really stress how bad you feel and ask what they would suggest regarding your medication and look for things you can do and enjoy. At one time all I could do was listen to audiobooks as I couldn’t even read!

I have a very Gestalt approach to my health believing that my body is much more intelligent than my mind and when my heart starts to play up I think of it as a conversation between my heart and mind so I ask my heart what it really doesn’t like during a meditation. My heart has never failed me yet to give me the answer. Gut works just as well and so I have managed to work out behaviours, thoughts, drugs, foods and drink that really upset my heart and gut AND also have to consider infections which cause inflammation. Even the slightest hint of infection can have an affect so it’s incredibly complex and everything is linked to everything else.

But know that your heart can heal, given time.

If only everything was binary life would be much simpler!

[MeganMN in reply to CDreamer]

Thank you so much for your reply! I, personally, have been very reluctant to take medication, especially cardiac meds. I know they are life saving for many, but they feel like poison to my body and my reactions have always been in line with that. Prior to the heart trouble, I have always dealt with things more holistically. I felt like I needed to be a 'good patient' and try the meds, but every time I do, it feels terrible. I am going to try to stop all of them with my doctors permission and try to see what shakes out. I have been reading books on healing the vagus nerve, the bodies response to trauma, and other things that may help more holistically. I appreciate the message immensely. One of my long term suspicions is related to a histoplasmosis infection years ago that resulted in a calcified lymph node mass in my mediastinum. I have long suspected that it is impacting my vagus nerve, which may be causing or aggravating my heart issues.

I know it is early in the ablation period. I also know, though, that the rhythm I am dealing with now is the same rhythm I had before the ablation. They were able to fix the SVT, but just couldnt get the left atrial PACs fixed. With SVT, it is not the same blanking period as with Afib. I appreciate the info, though, and will certainly re-reas everything!

[CDreamer in reply to MeganMN]

Megan - you are one in thousand, you are curious enough to follow this through so I wish you well on your journey, you have good clues to follow. You are the expert on you, never forget that. Trauma be it physical or psychological and pretty impossible to split them anyway is usually the start of ill health.

I did a lot of work on vagal training and several things helped - look at the work of HeartMath - they produce a gadget which tracks HRV - heart rate variability - which is a good indicator of ANS and the balance between Sympathetic and Parasympathetic. I still use their principles 15 years on. Today’s smart watches also track HRV but not to the detail and not in a usable way but can be helpful to note at which level your heart settles.

Another book I found astounding is Breath - the lost art - James Nestor.

I used to also practice EFT or Tapping and found that very helpful in stressful moments - loads on YouTube - a few worth watching.

As a daily routine - Donna Eden Energy routines - still use it. Still the most comprehensive I have known but Energy Medicine is almost impossible book to make any clear sense of - but boy is she good.

Cold water immersion - these days it’s a bit too risky for me so I finish showering 20 sec cold shower and ALWAYS have my hair washed with cold water, never even warm.

Humming and or singing - I go to community choir once a week.

I have a regular meditation practice and Tai Chi for gentle, mindful exercise.

There is an emerging interest in the role of ANS and arrhythmias and previous trauma, probably the best known book is The Body Keeps The Score - worth reading if you haven’t already. I attended several lectures from Bessel van der Kolk when training and didn’t particularly take to him but the book awoke my interest. I was lucky enough to have some Sacral/Cranial massage from an NHS Consultant who trained with one of the leading people and have to say it was remarkable. I have now moved away but found an osteopath who practices it so keeps my skeleton in line which helps the nerves, literally.

Self healing is possible and useful but it is incredibly hard to do on your own. Find a community near to you to help - there are plenty of therapists of varying disciplines, often originally trained in western medicine so have learned from multiple disciplines who are helpful at different times. Trust the process and they will appear but my guess is you know that.

You might also, if not already, want to look at Polyvagal Theory - very controversial even in Psychology - but useful learning.

Having said all of above which I know helped me cope and lessened the impact of the arrhythmias, the thing that eventually worked for me was pacemaker,

I now live with the consequences of drug induced harm in that I developed a fairly rare autoimmune disease so as you might imagine - I am not a fan of the drugs although the drugs I have to take now do keep me functioning so it’s always a risk:benefit assessment.

As I said, believe your body is more intelligent so all the symptoms you describe are big red flags for me. Sounds like you have is a doctor with whom you have a good working relationship. To do this stuff - that is essential as you haven’t the energy to engage in battle. Compassionate, empathic and knowledgeable doctors do exist.

[BobD Volunteer]

I cant add much to CDreamers excellent answer than to emphasise that you are still only just at the start of recovery. As we explain in our fact sheet it can be at least three months and often six or nine months before the heart fully heals and many people are still improving over a year later. Doctors may tell you that you will be fine in a few days but we patients who wrote the fact sheet are the ones who have had these procedures.

Stay well hydrated , listen to your body and be patient but if in doubt contact your arrhythimia nurse.

[Desanthony]

You are in the very early days after the ablation. Have you read the AFA leaflet on ablation and recovering from ablation? If not then please do. You are still in the blanking period so take things easy. Do everything in moderation and work up to normal activity very slowly over a period of time. If you are tired then it's your body telling you that you are doing too much too soon. It can take months to get back to what you term as your normal self.

It may be a good idea to contact your cardio or arrhythmia nurses and ask their advice.

All the best.

[Rhoded]

Hi Megan I am sorry to hear about your experience on Bisoprolol. I am no longer on it as I have asthma and should have never been put on it in the first place. Only while in A and E they changed it to Diltiazem

[MeganMN]

Am off the Propafenone now and feel much better. Have started Verapamil and finally have control over the Arrhythmia. Woohoo!