Every other beat for 4 hours, when is it in need of medical assistance?

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I was used to Ventricular Tachycardia, "cured with an ablation last year, but my ectopic beats are getting more and more frequent, though the cardiologists say at least its not forming VT. But this evening, for four hours now, every other beat. They are strong enough to make me feel as if my back is rocking, and little explosions sending shockwaves each side of my groin. (Click on picture to see ECG I just took).

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  • Posted

    Blimey Peter, that is no joke!  I can understand you must be feeling dreadful.  Are you going to your GP or are you like me that finds that there is no one there for you!  You are 'the' Peter aren't you that finally got to see a Neurologist re side effects of the Bisoprolol .... or have I got that wrong?  I don't envy you one bit, I've never had the ectopics like that.

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    • Posted

      Yes, that's me, and I consider this to be one of the side effects of an Autonomic Nervous System damaged by beta blockers, you see I am fine until I eat, last nights episode followed the eating of a sandwich, first thing I had eaten all day. I have given up breakfast and a mid day meal as that would be the end of my day for me. 

      As for going to my GP, that's like going back to the back street second hand car dealer to enquire about a problem with the car you just bought. For a year now, I present them with a list of symptoms when I get a sick certificate, usually they just fob me off but sometimes they will investigate just one symptom and whilst that investigation is going on, they will refuse to deal with another, of course investigations in the NHS take six months these days for an initial assessment. The Neurologist said I have Autonomic Instability so arranged some testing, when I rang to see why I hadn't been given an appointment, I am told there is a five month waiting list for an appointment. 

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    • Posted

      Hi Peter, it's a good few months since we communicated.  I've been trying to sort myself.

      In the main, in fact mostly .... just like you I get them after eating.  I had my dinner this evening, having had nothing since breakfast and off they went. They are nothing as bad as yours at all, but I really don't like them and don't want them.  I quickly had a look at the vagus nerve on line, but am so tired I've abandoned it for now.

      I've been there, got the t-shirt with these doctors.  They can only handle one thing at time, if indeed they can manage that.  I saw my consultant in January, he said he'll see me in 6 weeks, no lets make that 12 weeks ...... I was then told by his secretary that I have had my appointment for 2018, so it looks as though we are being rationed.  That's why I'm doing my own thing as there's no one there. 

      No one ever comes back to me re my Reveal Linq, do they you?  I almost passed out the other night and went into tachycardia.  No response.  It was buzzing/vibrating the other week and I've read that some are faulty and this is an alarm that goes off.  Action needs to be taken because in 30 days time, whilst I can download there will not be any automatic transmission.  I asked 4 times now ..... they are of the opinion that I am bonkers.  I may as well just lay down and die.

      Do you have some medical training Peter?  I have my nursing that goes back well over 30 years now and it helps, but I must admit you amaze me.  Where did you get that 'oxi thing' from please?  I invariably wake up in the morning and the heart is bonkers.  Goodness knows what it does while I'm asleep!  I had a 7 day loop recorder in February, still waiting for the results, but it's like everything within the NHS, they are reluctant to impart any information at all.  I hate getting to the stage whereby I have to ask for copies, because it upsets them and then they really won't have anything to do with you.

      It's really interesting about the Autonomic Instability, I asked my GP about my nervous system 18 months ago as I was having episodes of feeling I was going to pass out, but never did.  Fortunately, it's like an aura and I have time to lie down and then I can't move, sometimes for hours.  I can feel touch, can hear, can't see and can barely speak.  When it's about to pass, I get pins and needles in my feet, legs and finger tips.  I've not had any since stopping the Cardicor Bisoprolol I was taking, so I wonder if it was that.  Anyway, thanks to you I don't feel so stupid and maybe I have something similar.

      I'll end before I drive you crackers!  Hope you have had a better evening than the last one.

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    • Posted

      Hi Denise, no medical training, I was a mechanic, now a Security Officer at Houses of Parliament, but I certainly have an Asperger sort of mind, I love to understand everything about anything that I am interested in. Doctors don't like it of course,  had one accuse me of hypochondria but its the same as with you, the NHS do nothing, so I have to go it myself. Besides, if I was a hypochondriac, I would have been ringing for an ambulance every single evening last year when I went into Ventricular Tachycardia like they told me to. I only did when it had been going on solid for 12 hours!

      The Oximeter I bought is highly considered amongst the COPD crowd, a "CMS 50F" I probably bought it from Amazon.

      Now my Reveal Ling, I do get phone calls from St Thomas' asking me how I felt when I triggered so and so, they say they will pass this to my Cardiologist and maybe the next appointment will be sooner, instead I just received a copy of a letter they sent to my EP cardiologist at St Georges asking him to keep seeing me as my palpitations were getting worst.

      I am however confused as to what triggers it automatically to send. On 17th, I went to Ikea to order some things, a neighbour took me and suggested we have their meatballs, like an idiot I said yes and immediately felt so ill. I noticed the next day that the transmitting machine had sent during the night. 

      So today, I was sure that after last nights Ventricular Bigeminy going all night, the device would surely consider that worthy of notification, but no, it hadn't sent, so I just did it manually this evening.

      Hopefully this will get a phone call and I can tell them I have had to stop eating due to how ill that makes me, but I doubt even that would hurry the NHS up.

      I only feel ok now when in bed, its a Dysautonomia thing, but I make myself get up and do things otherwise I would become bed bound!

      I too get the pins and needles in my feet, so bad it feels like I have just been beaten on the soles.

      Hope things are getting better for you, if you get the Oximeter feel free to ask me any questions on how to download and print its information and such.

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    • Posted

      Reading all these you and peter I’m worried taking bisoprolol , even though it’s a very low dose and seems to have stopped my ectopic and  feelings of anxiety ,  maybe when I see cardiologist again I can stop them ! I don’t like taking medication that can have such serious side effects like you are still experiencing , I wonder how common it is?
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    • Posted

      Probably very uncommon, quite a few of us here, have you read the Bisoprolol buddies page?, but only those effected will search out these forums, the thousands who have no trouble wont.

      Do you have any side effects whilst taking them?, even if you do, its probably very rare indeed to find people like me who are permanently effected even when stopping them.

      Trouble is, it really is a life destroying chance taking these drugs if you are one of the very few, and whats more, you will then also have to battle the health services to get them to try and fix you, even more troublesome is the fact it cannot be fixed. The Autonomic Nervous System is such a complicated and delicate mechanism that these people are prodding with a rather large stick without knowing how to fix what they might be damaging.

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    • Posted

      Hi Jenny

      I bet there are thousands that are suffering and just put up with the side effects for fear.  No one to talk to and no one listening.  I met up with my sister on Tuesday and was shocked to see how awful her husband looks.  He's on the same as us and more.  He's afraid to say anything in case they don't then bother with him. 

      Since reducing to 125 mg, my face has changed.  I was looking absolutely dreadful and so old!  I know if I come off altogether, I will see a new me yet again.

      When do you get to see your cardiologist Jenny?  Did you know that Bisoprolol is also prescribed for depression ... and I think anxiety, so you may wish to bear that in mind.  I have suggested on here reading up the full side effects on the BNF (British National Form ..... ).  It is easy to understand, so just key in BNF + Bisoprolol side effects or just Bisoprolol and you will find it takes you through everything.  It's a real eye opener.  There's more on there than anywhere, that I have found at any rate.  If you can't find it, let me know and I'll add a link. 

      Please forgive me, but I'm losing touch .... is your heart OK now?

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    • Posted

      Thanks will look it up . I had heart surgery 2 yrs ago to repair mitral valve , all went okay and afterwards on no medication . Only recently after having knee replacement and on pain killers started these ectopics and feeling really anxious .  Cardiologist put me on 5 mg of biso but I cut it down to half , and about 1.25 if coversyl , my anxiety has gone , I can feel it start but it doesn’t then seem to translate to my body , can’t explain ! So am feeling better, no noticeable side effects on biso . See my cardiologist 6 months from starting them. I live in Australia so we can go private to specialists and then get some rebate from government, so can go to whoever whenever . I don’t think he will take me off them because they are working , and my heart didn’t quite go back to pre mitral valve surgery due to the leak being their for a while . Seems listening to some people I’m quite lucky , I definitely think stress added to mine . Maybe even another surgery and opioid pain killers . So you found it made you look old/ ill ? I am being told I look well since on it! In what way did your face change ? Thanks for your reply 
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    • Posted

      Thank you for your reply . It’s been a nightmare for you , and to know that it can’t be fixed as well . Will time help ? I haven’t noticed any side effects but only taking 1.25 half what I was prescribed. Enough of a dose to stop my anxiety and haven’t felt any ectopics , probably have some but not enough to feel . I hope you can get more answers . 
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    • Posted

      Looked up BNF page is not available , says forbidden, never had that come up before ! Odd , anyway I’m cutting my dose 1.25 down by half , been on it only two months but last few days felt odd , feel like I’m walking g like a puppet , and light headed but an odd light headed , anyone feel movement affected , not noticeable just feels disconnected 
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    • Posted

      That is one of the symptoms I have that has remained for the year since I stopped taking them, especially as I get tired, I become dizzy, people think I am drunk, gets hard to walk in a straight line. Worst is if I change the orientation of my head, so if I look down then up again or turn my head quick, the world seems slightly delayed to catch up with where I am looking.

       

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    • Posted

      It's exactly the same for me and I stopped it three months ago. It's like someone has taken my soul.

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    • Posted

      I stopped it 2 months ago, I can breathe and don,t feel so dizzy and tired so maybe it’s a matter of time to feeling better,
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  • Posted

    Get a 24 hour monitor , anything over 5000 in 24 hours my cardiologist said was cut off point ie they treat , I had 9000 so out on very low dose beta blockers and they have stopped has had my anxiety! But I’m a lot older than you , 66 and had heart valve repair so this is all taken into account 
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