Doctors don't listen Any Help?

Hi Everyone, I am new to this forum and maybe someone can give some advice. I was fitted for a dual chamber pacemaker in August of 2016 for 3rd degree heart block. Prior to this I had no events.

 I left the hospital feeling sick. I was told it was nicotine withdrawal which did make sense. 5 days later returned to the emerg with lightheadedness and an over all feeling of being unwell. I had a cigarette by then so it was not nicotine withdrawal.

 

They convinced me it was anxiety and that pacemaker was working just fine so it could not be caused by the pacemaker. For the next 10 months I endured symptoms of light headiness, weakness to the point I could not stand up, no energy and a feeling of just not being well.

 

Symptoms gradually increased and were more frequent. I do suffer from anxiety however these spells I was not familiar with prior to the implant. I finally was talking to my psychiatrist about it and she confirmed that it was not anxiety and to see a doctor ASAP.

 

This July I was referred to an internist specializing cardiology. He put a holter on for 2 weeks. He called me 4 days after I returned the holter and said to not drive, you need to see a specialist immediately. Well he even called him personally, but no appointment. 7 days later I go by ambulance to the hospital for chest pain and difficulty breathing.

 

Well the doctor who happens to be one of the specialists for cardiac arrhythmias (and the one that authorized my pacemaker last year) said he turned of the pacing and lowered my rate to 40. He said I would not feel palpitations anymore. I told him I did not come in here for that, I was experiencing chest pain and breathing problems and his reply was “well it is not the pacemaker causing it) He also said the doctor that said that I could not drive was over reacting even though my heart rate was going up to 189 on those tests on a continual basis without any stimulation.

 

Well the pain disappeared and the breathing was also back to normal after the adjustment however now I have  continual symptoms and can not do anything because my heart rate is going to 42 just sitting and spikes up to 86 and back down again which I now have constantly along with, Palpitations (which I never had before even with a high rate, I never felt them), chest tightness, head throbbing, a pounding pulse in the neck and head, lightheaded, throat tightness, sweating and headache. I have also deveoped high blood pressure when before the implant I had low.

Went back to the pacemaker clinic and all they say, its not the pacemaker, the pacing has been turned off.

I have also been advised that I have never had to use the pacemaker since it was implanted.

Has anyone had to deal with this?


4 Comments

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by NiceNiecey - 2017-09-02 23:23:13

Something is not right.  Why put a PM in and then turn it off? especially if you have Third Degree Heart Block.

Is it possible for you to have a second opinion from a different cardiologist with specialized training in electrical problems? called an electrophysiologist?

If your PM is turned down to 40 BPM, of course you feel horrible, I would too.

All the best and keep us posted.

 

I am trying to see a another doctor

by mayan2012 - 2017-09-03 13:35:15

NiceNiecey...I have tried to see another doctor, there has been a referel however I ended up in the emerg. He said he turned off the pacing because I have never paced since it was implanted. Since he did that on August 2nd this year my symptoms are getting worse. I now go from a heart rate of 86 to 42 in seconds,,but I still dont think the pacemaker has come on. I am trying not to go to the emerg because I dont want the same doctor again so I basically stay in bed or try not to move around too much. I have tried calling the pacemaker clinic and they just said you will have to wait for the referel. I was never given a cardiologist after the surgery, all they said was see you GP if you have a problem..totally bizarre when you have a heart problem.

I don't know about healthcare in Canada

by MartyP - 2017-09-03 14:00:14

Perhaps, if you can, you might want to consider a trip to the US to get to a cardiologist / physiologist ?  

hi

by Bionic Beat - 2017-09-03 19:07:57

If you are in London Ontario as your profile shows, you have a choice of three excellent hospitals.

I cannot begin to understand your problem, as 3rd degree heart block is a reason for an emergency pacemaker to be implanted.

mayan, I do hope you get it sorted quickly.  there are choices in London.

MartyP, its not the Canadian healthcare system.  it works very well in most cases.

 

Best Wishes,

Bionic Beat

 

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