Only 60 and multiple electric issues

Posted by dokane @dokane, Oct 6 5:27pm

I’ve been having issues for a few years that are looking like chronotropic incompetence and tachy- Brady syndrome

I have episodes where I get very confused, faint, weak, heart pounding, feels like air has no oxygen. Hot weather and esp hot humid weather make it worse but si went from not being able to do bigger stuff to now some days I can barely fold laundry or carry in groceries without a mild
To moderate episode.

I hate that I am so young. Getting ready to retire soon. Was looking forward to a fun 10-20 years.

Now I’m worried I may not get that. My doc says no immediate concern for stroke or heart attack. They will likely pace me after this (third and final) 30 day Holyer.

I’d like to connect with others who have this condition to see what your experience has been.

Are there other online auppprt groups? I looked on Facebook and didn’t see many.

I’m scared but don’t want to worry my family too much.

Deb

Interested in more discussions like this? Go to the Heart Rhythm Conditions Support Group.

@dokane
Are you seeing a cardiologist, Electrophysiologist.

I don't have your condition but have a ICD/Pacemaker and take medications for heart failure, irregular heart beat, etc.

REPLY

It won't make you feel better, but atrial fibrillation and other electrically generated dysrhythmias are increasingly more common, as are cancers, in folks under the age of 50. Nobody seems to have a good handle on it, although lots of 'theories'. In my own case, I developed paroxysmal AF most of the way through a 10 km maintenance run when I was about to turn 65. It hasn't been what anyone could charitably be called 'fun.'

Were you provided with any literature? Have you googled your condition and read a bunch of NEJM or Heart Association literature? That is how I learned about my own electrically disordered heart. Your doctors won't appreciate you peppering them with questions designed to show how much you know, but they should not be averse to answering one or two questions about what they propose for you if what they propose doesn't seem to make much sense based on what you have learned and on what they tell you is wrong with your heart. Only one or two clarifying questions, not a dissertation about all you have read and understood.

Except for ventricular tachycardia, all other dysrhythmias of which I am aware (and I'm about six miles from being called an expert) are not life-threatening. They can be worrying, uncomfortable, intrusive, inconvenient...oh yes....but they're not going to kill you soon. Almost all of them can be managed reasonably well with medication or with a catheter ablation, or with a pacemaker. In that order, usually.

Most doctors want you to live well. This means quality of life is very important. They want you make you as symptom-free as possible so that you can sleep, walk, eat comfortably, read, relax, and travel and shop and want to be near family and friends for the social benefits. If they can offer medication to help you to live that way, bonus! (Nobody I know likes taking pills, especially if they are novel to you and disrupt your 'style' of living.) Unfortunately, the medications tend to lose their potency with heart disorders over time, and that is when an ablation or a pacemaker might be needed. This isn't necessarily true for all patients, but it is so greatly common that the literature describes atrial fibrillation as a progressive disorder. I haven't had bradycardia or tachycardia except when overdosed on metoprolol for the AF or when I had a stress test and was briefly in 'supraventricular tachycardia', which went away very shortly after I got off the treadmill. So I am not well-versed in brady/tachy syndrome.

REPLY

Looking like I’ll likely be paced. Right is it’s exhausting and slow to do about anything. This weekend I did 4-5 loads of laundry. Took out some trash and had to sit regularly yo calm everything down.

I’m so discouraged. I had plans for the next decade or two and unless the PM makes. Give difference I won’t be able to do much but barely tend to myself.

Docs have said they don’t know why it started so young. They don’t normally see it until 80+. Not much to be done but a PM but everything I’ve read says it is progressive. I guess I’ll eventually end up with afib which will then cause clots, strokes etc.

The whole thing has me down

Does anyone know of any there support groups where I can listen and learn

REPLY

Deb, I’m sorry you are experiencing these issues with your heart. For most of my life I also struggled with issues similar to yours. Over the past three years I would faint without notice. I was afraid to drive for fear of injuring someone if I was being the wheel. My cardiologist and I talked about a pacemaker implant but he seemed reluctant. In April I had an episode at the market. Paramedics were called and I was taken to the hospital. My doc was out of town on holiday. I saw an on staff physician and before long I had a pacemaker implanted. The difference was immediate and pretty profound. I wish I had gotten the implant years ago and not lived with not being confident in when I would have an episode. I’ve not had any problems since and my heart and I are very grateful.

REPLY

Hello Deb
I do not have your exact condition. I do have tachycardia as well as heart failure. I also have biventricular pacemaker (or CRT-D).
The human heart is both a medical miracle and a puzzle. Arrythmias are a source of constant concern for many of us. But, also for many of us, they are manageable.
I agree with @jacquelinemott. The pacemaker will help you tremendously. I, to, before the I had my implant, could hardly walk a 100 feet or lift anything. Life was pretty miserable. But, now, I have my life back and do pretty much all the things I was able to do before. I, quite honestly, feel great, and have wonderful quality of life. No compromises. I am just grateful to be living in a time where this technology is available.
I do not think there is anyone who wants a pacemaker. We all experience some level or another of fear and dread at the prospect of receiving one. But the technology today is so advanced that I am pretty sure you will be pleasantly surprised with the outcome. Chin up! You can do this!
Come back and let us know how you are progressing.

REPLY
Please sign in or register to post a reply.