Feeling surprisingly sad about all of this

  • by ckn
  • 2020-03-07 10:56:34
  • Coping
  • 176 views
  • 7 comments

Hi,

I'm in my early 30s and have been having vasovagal syncope with no trigger for the last 6 years or so, haven't been driving for about 4. For years I was told to just drink more water, eat more salt, that kind of thing (nothing workerd). However, this summer I got a loop recorder which showed that during my symptoms, I would have pauses of around 6-8 seconds. From the timing of when they happen vs my symptoms, they think that this is predominantly cardiac and not just BP (we also tried fludrocortisone for a few months, which I'm still on but hasn't seemed to change symptoms). These pauses are also happening when I sleep. I found out a week ago that I need to get a pacemaker.

Some of this is a relief- I have been having scary episodes for a long time and am glad that I'm being taken seriously. But I'm feeling surprisingly down about this. There's no guarantee that this will actually work and relieve my symptoms, thanks to the BP aspect of vasovagal syncope, so although I hope I can drive again it's just another gamble. I'm worried about missing work.I hate telling everybody about this and having to explain it over and over. I'm getting married soon and although it's so superficial I'm worried about having a fresh scar. I think I did a bit too good a job of reassuring my family because nobody seems worried at all. I'm also feeling frustrated at the cardiologists that I've had in the past that were so reluctant to do anything because of my age- fortunately my current EP is really great and I feel in good hands. This is not my first chronic health issue, and I can't help but feel shitty that it seems like my body is failing me again.

I feel like logically I know that this is totally fine and overall a good thing, and won't drastically change my life etc. but emotionally I'm feeling awful. Did anybody who felt this way find that they felt better once the pacemaker was actually in? Any tips on trying to keep this in perspective? (PS: I'm reaching out to my therapist to try to get some help there, but just felt like maybe there was some experience here that could be helpful).


7 Comments

Feeling sad

by Domkin - 2020-03-07 13:09:39

I think it's natural to feel this way, it should get better after your pacemaker is put in. I'm not much help to you. There are more experienced people on this site that I'm sure will be able to help you. Good luck with your surgery  

Pacemaker etc.

by AgentX86 - 2020-03-07 14:59:50

First, the cardiologists that suggested that you were too young for a pacemaker should lose their licenses.  If you need one, age doesn't matter one little bit.  Some here have had paceakers since they were young children.  Syncope, alone, says you need a pacemaker. Syncope can be deadly (fortunately, you're not driving).  Six-second (over four or five second) pauses say you need one.  Pauses can be deadly too (your heart may not restart - the longer the pause the more probably this is).  It doesn't matter how old you are; dead is dead.

Keeping hydrated is important, as is keeping your elecrolytes where they should be but it's very rare to need more sodium.  The Western diet has so much sodium in it that almost all of is gets way too much.  Usually magnesium is the one we're short on.  It's harder to come by in our diet and isn't well absorbed but is essential. Same deal with potassium but it's easier to get in the diet.

You have every right to be down but your family is right.  You need this and it's really not a big deal.  The surgery is a piece of cake and it'll probably make you feel better quickly.

I didn't have any related depression at all.  In fact quite the opposite.  after the surgery I was on a high for weeks.  My body was finally getting the oxygen it needed and I could sleep again.

 

There are quite a few posts about vasovagal syncope on this forum....

by crustyg - 2020-03-07 16:49:07

Have a search for vasovagal (it's more productive than vaso-vagal as a keyword in the search feature (near top right)).  At least one poster says that a PM has been a positive life-changer, but others warn that a PM is usually only a *part* of a treatment plan.

Having a bit of hardware that 'controls' your heart implanted in you (for whatever reason) is a big emotional event, but most of us get over it by focussing on the positives that it brings.  Accepting that it brings benefits is a pre-requisite: a *very* few contributors here feel that a PM was foisted on them, and that's not a good place to be - however true.

You *may* be able to charm your medical team into actually giving you a trial of being paced with a temporary pacing wire and some tilt-table time.  Sounds tedious and a lot of work, but it might be a revelation for you and the team.

One of the most powerful approaches to long-term health conditions is not to allow yourself to be defined by your medical problems.  Easy to say, but it's really effective.  As a glass-half-empty person for half of my life, I know this isn't a simple trick, but it does work, and I know some amazing folk who positively refuse to become their disease/handicap etc.  Instead they *are* wives/mothers/husbands/fathers/nurses/doctors/teachers etc. who happen to have some issues that they manage with their medical and nursing teams.

Been there

by BradyJohn - 2020-03-08 00:39:22

Hey CKN,

My first vasovagal syncope happened at the age of 24 in front of 700 people.  I thought it wasn't any big deal, and though they didn't happen super often in the following years, they did happen often enough that my wife carried a 'back of her mind' worry about me for a lot of years.  My kids just rolled their eyes, "there goes dad again'.   When I fainted at work in late 2019, it really scared everyone around me. (watch video of the hockey player Jay Bouwmeester going down on the bench).  I get that you're feeling down about it, I'm 56 now and thought a PM is for 'old people'.  However, as someone else has already said here, having a consistent, reliable HR is pretty amazing.  I wish I had gotten my PM years ago.

Cheers,

PS, if/when you have kids, they'll be super impressed with your scar :-)

Syncope

by Gemita - 2020-03-08 01:51:59

Hello CKN, don't be sad, be happy that at last the implanted loop recorder has confirmed some problems that need fixing.  I too have suffered from intermittent syncope for as long as I can remember and only with the help of the loop recorder was I finally able to prove to my cardiologists that my problems existed.  They also saw severe pausing and bradycardia, especially at night as my blood pressure and heart rate naturally fell even further.  

As you know, there are several different types of syncope, mine is more situational, “mainly during swallowing” and also associated with oesophageal problems (high pressure contractions) and arrhythmia, but even so a pacemaker has been immensely helpful.  I have only had one pre-syncope event since the pacemaker was placed in 2018 following swallowing and my cardiologist said it was probably due to Ventricular Tachycardia at the time.  I have also found that having a pacemaker pacing me at a steady, higher heart rate is helping to keep my arrhythmias controlled since they were found to be predominantly bradycardia induced.

It is true a pacemaker currently cannot prevent our blood pressure from falling as it does with heart rate.  My experience though has clearly shown that by keeping my heart rate set at 70 bpm, this steady, higher rate night and day, has helped to stabilise my blood pressure too and I just feel so much better.  I am hopeful that you will get a similar benefit and be able to take back some control.  You clearly have a cardiac issue which needs addressing in any event and the pacemaker will be the right treatment for this, even if it is not always the complete cure for your syncope.  My doctors told me initially that they were concerned I would not be completely helped by a pacemaker but I am happy to report that I have had an almost complete cure for my syncope as well as better control of my arrhythmias, heart rate and blood pressure. 

Just another thought. You say your pausing is happening during sleep.  Have you been tested for sleep apnea?  Might be wise.  

To conclude, I feel so much better since getting my pacemaker. Pausing and slow heart rates were triggering many unwanted symptoms and making me feel as though my body was shutting down (and it clearly was!).  Now I am more alert, less anxious, more in control, getting fewer arrhythmias, almost no syncope events and best of all my blood pressure and heart rate are mostly stable.  I wish you similar success and best wishes for your forthcoming marriage.

thanks

by ckn - 2020-03-08 11:36:24

Thank you all so much for your responses. I'm feeling quite a bit better after reading them, especially hearing from people who have had success with vasovagal syncope.

Twinning!

by JaeJae - 2020-03-20 11:02:41

Very similar to you in the the pauses and has been happing for years for me also. Also had a loop recorder and identified that I needed a pacemaker. I'm currently on day 4 of having a pacemaker!

I'm still getting used to it all but I havent had syncope in 4 days (which is kind of amazing for me) and if I dont have anymore for 3 more weeks I'll be able to drive again!

I totally hear your concerns around getting it and I myself am still coming to terms with it and at some points feel down about it. I'm in my 20s and my pacemaker is set a 50bpm and I'm finding this is a good rate and keeps me feeling awake as I used to just kind of drift off and lose concentration easily so that's been a definate plus!

If you have any questions a week or month or year from now let me know and I'll do my best to answer them. 

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