Struggling...

Hello everyone,

No going to lie, I was on the fence about joining this group for many reasons, but today is the day that I hopefully can connect with other individuals that share the struggle, but mentally and physically.

I am 31 years old, extremely active and have had syncope since I have been 17 years old. It has cost me countless jobs due to episodes occurring on the clock(liability). Last year, after what seemed to be a lifetime of hopelessness, I was finally fitted with a pacemaker after passing out on a plane for the second time(very hollywood and unreal experience). It was determined through an implantable heart monitor that my SA node is basically shot and does not always fire the way it needs to creating dangerous episodes of sinus arrest.

As a young father and husband, I have suffered mentally more than anything as my career choices have been significantly altered. I'm having the hardest time finding work and nothing seems to be on the horizon. People look at me and see this physically fit young man that appears to have absolutely nothing wrong with him, however as many of you can relate, that's simply not the case.

So much has changed in this past year and the adjustment to the severity of my condition has taken such a toll. My cardiologist had stated after the surgery that the syptoms would most likely still be present, however the pacemaker would stop the HR from going into sinus arrest. Needless to say he was right which was a little depressing but at least I'm no longer reaching syncope.

I feel like a burdon to my family and even worst that I can't seem to provide the way I desire. It takes a toll on my marriage for obvious reasons and makes me wish this problem wasn't real, that I would be better off by myself. I've decided to start seeing a therapist to help me process how troubled things are, it helps, but still hungry for more, it's just difficult when you're holding your 2 year old son walking down the stairs and symptoms kick in, a constant reminder that other people can always be affected by my condition. I would feel so devestated if I ever caused him harm from being symptomatic.  


4 Comments

Keep your head up!

by nhorner10 - 2020-01-30 12:07:18

Hey! I promise you're not alone. I, along with many other people here, would absolutely agree with you that the mental/emotional challenges have been SIGNIFICANTLY harder to overcome than the physical ones. I'm a little younger than you (24) and don't have a wife or kid, but I can imagine that adds a whole extra layer of complexity to everything. But she's also you're #1 fan, so treat her like it! It can often seem like everything would be easier if you were on your own, but if you really think about it, you know that's not true - it takes a village. I'm sure the feeling of not being able to adequately provide is very hard too, but I'd be willing to bet no one else holds you responsible for this but you.

Sometimes we just get dealt a shitty hand and you can either spend all your time feeling scared and sad, or you can try to start playing again with the hand you have - it took me a long time to realize that. In the end, the drive has to come from within, it has to be a conscious decision to move forward. I'll leave you with a quote that I've found some solace in:

"All journeys have a cost. The path to our purpose here is rarely built comfortably. So are you restless enough to go here? Are you hungry enough for more to do the work?"

-Jennie Allen, Restless

Keep your head up, you got this!

Syncope and?

by AgentX86 - 2020-01-30 14:40:05

Your pacemaker took care of your syncope, right? What other symptoms do you have that prevents you from having a normal life?

Yes keep your spirits up. This is Day 1 of the new you !!

by Gemita - 2020-01-30 14:42:56

Hello PDudley0610,

What a caring person you are and so mature for your age.  You have taken the first steps in helping yourself and your family to a better future and you should be very proud. The hardest part is sometimes admitting that we need help to overcome our difficulties.  It seems almost by admitting we need help, we have somehow failed in our lives and in our relationship with those we care about.  This is often far from the truth.  It takes courage to admit that we have a problem and even more courage to do something about it.

I suffer from syncope and arrhythmias and now have a dual chamber pacemaker which is so helpful.  It does prevent me from actually losing consciousness (so far) but it doesn’t entirely stop my occasional sudden sense of “being close to collapse”.  My syncope was apparently caused by autonomic problems, particularly during swallowing which often triggered my arrhythmias too.  These often occurred at high heart rates making my blood pressure so unstable. 

My Cardiologist/EP sent me to a neurologist with a special interest in syncope to help me manage my symptoms.  Perhaps your doctors could refer you for an assessment with a doctor who can help you learn practical ways of helping yourself when your symptoms occur.  Even though your problem seems to be mainly cardiac related there are so many causes for  syncope. The neurologist carried out a range of autonomic tests and told me about the importance of certain measures I could take:

Increasing water intake to 2 litres per day and increasing salt intake (but the latter only after speaking to your doctors)

Avoiding caffeine (or reducing) and remember caffeine is in chocolate and cola

Eat small frequent meals low in refined carbs

Avoiding alcohol which is dehydrating

Slowly build up strength/balance exercises:  swimming, yoga, Tai Chi, cycling

Avoid prolonged standing/sitting

Get up slowly from lying or sitting

Postural manoeuvres to avoid syncope like cross legs and clench thighs/buttocks, clenching fists

Avoid meds which may make syncope worse and consider (when all else fails) meds which might improve your symptoms

Neurologist also recommended cognitive behavioural therapy (CBT) and Mindfulness therapy, both of which were really helpful.

I would involve your wife in your therapy so that you and she can discuss what you most fear and the therapist can offer support where needed.  You might be surprised how much you will learn about each other and about yourself. Therapy can be painful, because we are having to face what we most fear - for example, not managing, getting worse, losing each other - but when these fears are out in the open they become less threatening.  Good luck and stay safe with your son

would never have

by dwelch - 2020-01-31 01:51:16

I have complete heart block from birth, I would not have had a daughter to pick up and hold and carry around without pacemakers.  I have been on borrowed time most of my life.  

You could just as easly have a normal heart and trip on something while carrying your child. 

Life happens you can only control so much of it.  While the pacer might or might not make you perfectly normal, it makes you better and better is good enough.

 

You know you're wired when...

Jerry & The Pacemakers is your favorite band.

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