Help - Rythym Issues

I am currently strapped onto a 2 week monitor, I have already had multiple "pop" sensations within the first hours of having it on so things should be put to rest soon.

My main fear is that the issue is a potentially lethal ventricular tachycardia caused by some defect in my heart as given my symptoms and other relevant factors that is about the most common but still dangerous thing it could be. I am also worried I may have Long QT and one of my "pops" is going to fall in the wrong spot and short circuit me for good as someone on a forum once said that could happen.

 

I am 59 and my last episode of Ventricular Tacycardia was for a constant 12 hours, I am still here so whilst I was silly and should have rang an ambulance sooner, I am still here. What has made me ill though is the time I spent on beta blockers seem to have left me with permanent symptoms. I am to be referred to an Autonomic Disorder specialist. 

Below is what my VT looked like, it feels like single ectopic beat you may be having, but is constant like a constant big fluttering.

That sounds horrible to experience. The worst I have had was 2 a single beat apart during my episode in June that triggered all this. I tried to breathe deep but kept getting a "pop" with each deep breath, at one point I thought any breath was about to bring on the final fatal pop so was afraid to breathe.

I am in a very sorry state right now myself - due to having to catelogue these things in my monitor diary I am on edge and noticing 10X more than the usual amount - I am also on vacation to try to get all this sorted with all this so lying in bed alone all day has not helped - I thought the rest would do them good, not so. I am back into the worst state I have been since this all began again 6 months ago.

 

Which beta blocker were you taking? I was prescribed bisoprolol in late 2014 and suffered many side effects from it including lack of feeling/numbness in my left leg particularly when walking and to a much lesser degree in the right. After genetic blood testing for various hereditary diseases and nerve conduction tests the neurologist could only say an idiopathic form of neuropathy. I had stopped the bisoprolol a couple of weeks before seeing him and apart from the numbness the other symptoms had mainly cleared up. Another neurologist questioned  the earlier tests and said it was a form of CMT based on my narrow feet with a high instep and my now curling up toes.   

The numbness caused a change of gait and I now have a lower back problem the reason for which does not show on CT or MRI scans.

bisoprolol

I have not taken any Beta blockers since March, but the symptoms I got bas soon as I took Bisoprolol, are the same symptoms that remain to this day.

Its taken my until last Tuesday to find somebody in the NHS who will employ logic rather than claiming I suddenly got "anxiety" the day they put me on Bisoprolol!

I even saw my MP about it this afternoon.

I know its hard, but worrying will definitely give you more ectopic beats than not worrying. I understand the heart has various back-up plans to keep itself beating.

Even though I no longer get Ventricular Tachycardia, I still get ectopic beats that can be every other beat, especially after eating, see another of my ECGs in the little box below. The Cardiologist considers this to be nothing to worry about at all, says my heart is fine now!

What did your MP say?

She and her researcher were very nice, made me a cup of tea. I had initially written to her when nobody in the NHS had listened to me so I wasnt going to ever get better, I told her that since my writing, I have caught the ear of a cardiologist who agrees it is Autonomic Neuropathy and so the wheels are finally in motion, but at least she is there if the wheels stop again.

I brought to her attention how so many young people suffer undiagnosed for years with this but I feel she has other projects that she is busy with.

At least she is now aware of this illness, she was Googling it as we spoke.

 

I am doing my best to stay calm and it does seem to help a lot. I saw a very helpful video last night by a cardiologist with some quasi spiritual aspects added to it.

I am trying to be logical about this:

I was not born with a malformed heart (echo proved this 10 years ago and no issues when young or picked up at birth)

I have had these sensations for 12 years although more frequent now they have yet to even make me dizzy

I am still too young for CAD 

I have no family history (the video I saw yesterday said anything after 55 in men does not really count as a bad history so my grandfathers living to 90 regardless of AFIB is probably actually a positive history

Given these facts at worst I have a slightly more poor long term prognosis than the general population due to these things. However by getting all of these tests to rule out serious undiagnosed issues, not smoking and quitting drinking as well as losing weight I will probably be better off than then your average Joe (assuming I can get my mental health in check and resume excercise).

In the 1% chance something very serious is going on when it is my time it is my time, I have already lost 6 months of my life over this and around a year when I was younger. I've had enough of these godamn things. Yesterday I went out and took the shovel to heavy wet snow for 30 mins as I read heavy snow showling is basically the hardest thing your heart can take until my HR was through the roof - if they are going to kill me then get it over with.

 

Strangely my research in the past three year did not bring up the term Autonomic Neuropathy. looking at it now many of the symptoms fit mine. I wonder how different from a neurologist  will the Autonomic Neuropathy specialist be . Most neurologist are general ones and few seem to specialise in the unusual. I was told that the centre of excellence for neuropathy is in Bristol.

Later today I have a private appointment with a spinal specialist.  

The fact that all my symptoms started when I took beta blockers, the fact that these same symptoms remain, even though I no longer take beta blockers, made me convinced that logically, beta blockers had something to do with it.

Beta blockers act on the Autonomic Nervous System by blocking adrenaline receptors. Every one of my symptoms is a symptom of a disrupted ANS which is precisely what beta blockers do, they disrupt your ANS, The breathlessness for instance that everybody reports from taking Bisoprolol, isn't because your lungs stopped working that day, its because the beta blockers altered the automatic breathing system, you have receptors that detect the amount of oxygen in your blood and tell the lungs to compensate when its too low.

So, one  of these links will take you to a site that makes medical equipment for the study of Autonomic Neuropathy, at the last paragraph you will find beta blockers listed as one of the medicines that can cause this.

The other link that answers your question is to Dr Ingle who is England's leading Autonomic Specialist, you will see he also specialises in neurology. 

http://www.dantest.com/dtr_ans_overview.htm

https://www.uclh.nhs.uk/OurServices/Consultants/Pages/DrGordonIngle.aspx

Thank you for the links. I'll read up on them later. One thing I did not get was breathlessness.

I saw back specialist yesterday and he agreed that both Bisoprolol and fluoroquinolones could be the cause on my initial problems. But how to prove it, how to treat it ? One poster on here went for acupuncture with a specialist in neuropathy and got some benefit when I suggested that yesterday he was in favour of trying it.