Complications

Hi everyone , I haven't posted for a while but as in my last posts the problems have not gone away , I was fitted with a dual chamber pacemaker on March 8th this year for 2nd degree heart block  . Since then my life has become a nightmare , constant dizziness , headaches , swollen stomach , chest pain and palpitations . I've been in and out of hospital around 15 times since with the ,cardiologists slowly turning the pacemaker down , it is now on its lowest setting with 50% of the power being used , since my last tweek my symptoms have got worse and am now on beta blockers , to say I'm frustrated is a understatement , I explain all how I'm feeling to the doctors but still they show no real interest in investigating , obviously I've looked into it and it keeps coming back to a damaged Vegus nerve which could have been caused post op , I'm getting no where fast and am losing my mind rapidly , it's effecting my family and people around me including my work , has anyone any advice or experience of the above symptoms . I've gone down the road of anxiety and it is defiantly not that , it's a physical thing that I feel , usually gets worse  when I'm relaxing , at work or gym it seems to be fine , I'm 42 and fairly fit . The headaches and pounding sensation is getting worse day by day so naturally I'm extremely worried . Many thanks , Dave 

6 Comments

Questions

by jimterribak - 2016-07-09 18:53:49

3 weeks after my PM.   I am working out some issues but nothing like you are having.   Are you working with a Electrophysiologist?   Can you get a second or third opinion.  You really have to be your own advocate and continue to research.    Some PM manufacturers have websites like this one.   I am fortunate to be close to a world renown heart hospital and feel I can get lots of backup if needed.   I also had heartblock that had me on the verge of fainting.   I was told this would get worse and be increasingly dangerous but I know how you feel in that it seems like I feel worse after than before.    I went in yesterday for tweeting of my settings that were causing what some call diaphragm pacing.   It does seem like docs don't want to admit that the PM can cause symptoms and even pain but they did admit that I am feeling my pacing.   Evidently some are more sensitive than others.    I am optimistic these adjustments are going to help me.    I wish you the best and encourage you to keep on searching.    

Sensitive pacing

by Barnes42 - 2016-07-09 18:59:43

Thanks for the reply , apparently I am very sensitive to pacing hence it nearly being  on the lowest setting and still being able to feel it , as regards a electrophysioligist I will make some enquires as that sounds promising , thanks again for your post , Dave 

Yes-- get an EP

by Jax - 2016-07-10 07:58:25

I found when you have a pm the doc to help you would be an EP.  They are cardiologists who have studied heart rhymes defects.  You could contact your local hospital to find one.  I interview all my doctors and see if what they say makes sense to me.    

 

+++ on an EP

by techiej - 2016-07-10 12:33:07

They are THE experts with regard to the PM.  The best situation is to have an EP and a Cardiologist in the same practice that has nurses who can also tweak your PM rather than just the PM reps.

Re the vagus nerve, it can cause lots of problems - it is the source of many of my non-heart related problems - but it is highly unlikely that it would be damaged during a PM implant as that it near the surface.  If you had other surgeries then yes, it can be a big problem.

Mine was damaged during a hiatal hernia repair which - due to the hernia, not the repair - damaged my heart as well which is why I ended up with a PM.

If it is the vagus, you will need to get a consult with a surgeon that specializes in abdominal surgery as 1) they would be the ones who coudl fix it; and 2) in my experience at least they are the only ones who will be familiar with the symptoms and cause.

Good luck - it took me seeing multiple docs and surgeons over a 6 month period before I found one who could deal with it...the final data point being a barium swallow test that showed my esophagus bulged near my repair - bad news for me is that it will be another 2 months before my first attempt at corrective surgery (he warned me that it could take more than one to fix).

Keep pushing for resolution

by TJ319 - 2016-07-12 14:46:02

I had my PM implanted in late 2013. It seemed so simple, dual lead to correct SSS and AV block.  It took over 15 months and a change in Electrophysiologists to finally solve the problem.  For some of us, the PM actually triggers a condition known as Pacemaker Mediated Tachycardia.  The new EP did a long EP study in the Cath lab and made major changes to the PM programming.  I've been happy with my life for over a year now.

 

Good luclk.

Thanks

by Barnes42 - 2016-07-12 15:43:37

Thanks for everyone's reply , after a crappy email to my cardiologist I now have an appointment tomorrow with him and hopefully on the road to get this sorted , will keep you posted , thanks again , the replys and messages mean a lot , kind regards , Dave 

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