Looking for advice on EP visit and next steps

[breadsander]

Hi all,

It's been quite a long time since my first post -- almost 2 years. I had my first non-converting episode of AF back in July 2017 when I was 27 years old, in which I eventually needed cardioversion to get converted back to sinus rhythm. I've since been on 120mg Cartia XT (diltiazem) extended release daily.

I originally wrote about my experience here:

healthunlocked.com/afassoci...

After my visit I was placed on a 30-day monitor which didn't catch anything abnormal. I later was fitted with a 2 week monitor which didn't catch anything as well. I've also undergone a stress test which showed frequent PVCs in the right outflow track during exercise but none following exercise.

As mentioned in my previous post my concern has always been regarding the sudden sensation of nearly passing out that I sometimes experience. This occurs very infrequently which is why it's been so difficult to catch. Each and every time is an equally frightening experience and my anxiety around my arrhythmia and general cardiac health skyrockets after these events. It can, for certain periods of time, hugely affect my well being as I get completely absorbed and my fear over sudden death takes over. It's exhausting.

Over the last 2 years I've been lucky enough not to have any major (ie. long lasting) AF episodes, although I'm near certain I've had short runs. Unfortunately I continue to have these near fainting spells, maybe once a month or less, with no explanation as to what's causing them.

My EP at one point suggested an implantable loop recorder. I live in the US, and even though I work for a reputable company my insurance does not deem a loop recorder as a required procedure and will not cover the implantation.

So, right now I'm at a total loss on how to continue. The only options I can see are (1) paying for the loop recorder out of pocket or (2) going for a full EP study or (3) fight my insurance and appeal for coverage of the loop recorder. I feel silly (maybe even embarrassed?) to do an EP study because by no means are my arrhythmia symptoms as bad as others. These near fainting episodes have at one time completely disappeared for months with nothing more than a handful of daily PVCs to remind me of my heart. And I don't have persistent AF.

I suffer from very intense heart health anxiety at times (coming in powerful waves for weeks at time), and one consideration I have is that these near-fainting spells are a neurogenic response rather than cardio related. I would hate to undergo an EP study in the effort to find the source of the near-fainting spells when it's been psychological all along.

Another consideration is that I think the EP would be going in more or less blind. They don't have a recording of these near-fainting attacks and from what I gather this may mean they have little clues to go on in search of this cause.

Finally, in general, I have some fear over an EP study. I'm only 29 and have never undergone any procedure remotely close to this, and my EP has somewhat discouraged me in the past from doing the study since the risk is non-zero, although typically very safe. However, in my last visit 6 months ago he seemed more open to the idea.

I have my visit with my EP tomorrow and I will discussing all of this with him.

My question for this community is what do some of you think I should do? Should I just gather my courage and do the EP study? Should I seek anxiety therapy for a few months before considering the EP study again?

I greatly appreciate any and all feedback. Thank you!

[CDreamer]

Hi Breadsander - it so scary isn’t it? I have lived through those episodes - the events are called syncope or near syncope and you will find a lot of information here - in particular look at PoTS and low BP. heartrhythmalliance.org/sta...

My suggestion:- get yourself a mobile ECG (EKG) such as a Kardia - you can then take your own trace anywhere you are so you have EVIDENCE. I learned that unless you have evidence - you can be talking to a brick wall. Also invest in a BP machine - look at the ones which are compatible with the Kardia because not all BP machines will register a BP if you are in arrythmia. Take your BP daily in the morning and evening to record a base line for at least 2 weeks - and whenever you have an episode. Keep a record diary with all the information - the Kardia has a logging system and provides you with a way of recording all events and then printing off a monthly report for your doctor.

In other words - take control and monitor yourself and become your own expert - you need to as there is so few doctors switched onto these conditions. Arrythmia + PoTS and often + Autoimmune with Autonomic Dysfunction.

There is a huge amount you can do for yourself - keep yourself very well hydrated - ie drink at least 8 glasses of WATER - pure water - on top of any other beverages. If you have PoTS - read the advisory on the website - spend as little time lying down as possible although sometimes it is really difficult for us to stay conscious unless we are prone! The advisory is to increase salt intake to 6g a day - that really helps. PoTS is diagnosed using a Tilt Test - ask your doctor if you record consist drops in BP - mine would go down to 60/40 and rarely was above 90/60. Normal is considered 120/90 or thereabouts. I am now SO consistent - 117/80 or thereabouts.

I would also look into working with supplementation - really good site to look at is heartmdinstitute.com/heart-...

If it is suspected you have PoTS, then you really need to see a Cardiac/PoTS specialist - look at the STARS site for info but unfortunately - they are few and far between.

The GOOD news is I virtually never have these episodes any longer, I found help, I became informed and an ‘expert’ patient so could provide precise evidence to the docs - without expensive testing - and I adopted protocols which helped avoid triggers for the episodes and generally just minded myself a lot better because I was informed.

Please feel free to PM me if you want more info - I am a lot older than you and live in the UK but I struggled with these symptoms all my life with no help and no information and I would hate for anyone else to go through that. You end up thinking that you are either a Drama Queen or inventing stuff up and YOU ARE NOT!

Hope some of that helps - my heart goes out to you - CD

[CDreamer]

Details of Kardia

alivecor.com/

[GrannySmithgs5]

Hi Breadsander , My sister was in a similar situation , she lives alone and would occasionally find herself on the floor . No idea what had happened by assumed she had passed out . This occurred with no pattern , over a period of 4 years. She had the odd medical test here and there , no- one really interested untill eventually somebody suggested a " loop recorder " . It took a few months but eventually she was found to have a heartbeat that was dropping so low that it caused her to faint .

My advice would have to be to fight for the loop recorder, my sister now has a pacemaker , medication and her life back ..............I wish you luck on your quest xx

Jean

[Buffafly]

I have episodes of nearly fainting - I caught them on Kardia because I had an episode lasting 20 minutes which turned out to be little pauses in my HB caused by my medication. Since I stopped the meds they have been too short and infrequent to catch. So I agree that a loop recorder is the way to go if possible. An ablation will only be helpful if the faint is caused by irregularity or tachycardia.