taking arrhythmia seriously

[wal4d]

after 20 years of going to the doctor's and being diagnosed with all sorts of things including depression and stress I finally collapsed and they diagnosed a complicated cardiac arrhythmia. the arrhythmia is caused by faulty electrics in both a ventricle and an atrial chamber resulting in random sudden very fast rhythms followed by very slow pulse rate leaving me 'wobbly', exhausted, weak with headaches. this occurs most days. I have actually had 3 attempted ablations with very limited success and am awaiting another 'double ablation' which has just been cancelled after waiting 16 weeks. I have been on various medications which have all failed to control the condition. I am considered a low priority because it is 'not life threatening' - it may well be but it is very life disrupting!

Is this typical treatment? Has anybody else faced this problems of it not being taken seriously?

Any advice?

[lancashirerose]

Not quite the same thing, but I've had ectopic beats for about 30 years and only recently feel they are taken seriously (maybe the doctors are just fed up of me complaining!) Tried 3 different beta blockers, no effect at all. Had lots of monitoring sessions which weren't very useful but now have an implant monitor which I activate. I could activate it almost every day but don't as it means a trip to the hospital to have it downloaded, only to be told they are ventricular/supraventricular ectopic beats and are harmless. Yes, well, that may be so but they cause me an awful lot of upset, they feel so horrible. Now being referred back to cardio again as the tablets haven't worked. I know lots of people have much worse and more serious problems, but this is really life-disrupting - can't relax and enjoy things when I feel my heart leaping and stumbling in my chest! I know how you feel - keep on going back and complaining!

Rose

[wal4d in reply to lancashirerose]

thanks lancashire rose for your comments and support. I am quite used to the heart leaping, stalling and slowly thudding - according to its random ways but it is the life -disrupting effects that concern me most. every day i have long episodes of feeling exhausted, weak and dizzy - even standing up can bring with it the threat of feeling i am going to faint. I used to have these events maybe 3 or 4 times a year but for the last 18 months it is constant with an occasional week when i actually feel normal. You are right about being persistent as my recently cancelled ablation has been re-scheduled with a different specialist on the same date so fingers crossed. Regarding the 'harmless' label the doctors keeping giving this condition I have told my wife to put on my gravestone 'They said it was not life-threatening'!

Regards and all the best.

Exiled Yorkshireman

[Maitha]

Also I'm having those extra beats long time back , having frequent scary episoids such as yours , ER team all know me well , and diagnosed and treated as panick attacks till it was recorded as complicated cardiac irrythemia two years back

Thank god I was lucky to have successful two ablations stopped my atrial flutter and SVT

But the third one failed to catch my PVCs

Anyway I'm feeling better recently with anti anxiety medication , but still having scary symptoms like heavy chest , about to faint , short breath , and irregular heart rythem but monitor shows only few missing beats together which is really shaking all my body and scare me a lot

Doctors keep on saying they are not life treating since my heart muscle is strong enough to deal with it

Wish you well

Maitha

[wal4d in reply to Maitha]

hi

thanks for email - sounds exactly like mine - my heart is also very strong. i have had 1 complete ablation and 2 attempted ones but condition is more complex hence the need for another 'double' ablation on tuesday to tackle the misfiring in the two chambers - atrial and ventricle. hoping it will at least reduce the incidence of presyncope - if not stop it altogether - as it is happening every day at the moment. for years mine was diagnosed variously as bronchial spasms, depression, anxiety, migraines etc, etc - not surprising they couldn't diagnose it properly as my readings all returned to normal by the time i saw a doctor - even ecgs did not spot it. i am much more relaxed about it and my wife and i even joke about it being 'non-life -threatening'! after 20 years at least i now know what is happening and why - it helps

wal

[Hidden]

I've had the ectopics for some time and of course, if I go to the doctor I don't get any problem. I had to wait till it got really bad (almost permanent) before I was given any attention. At the end, I went to A&E and the nurse explained that ectopics were perfectly normal and not to worry. She then took my pulse and said, Oh I see what you mean. Then the doctor came in, gave me exactly the same speech, don't worry, then took my pulse, Oh, I see what you mean!. .....ggggrrrrrr

Anyhow, on Disopyramide now which has taken it all away. And I've bought an AliveCor monitor for my iPhone so that if I get any funnies I can record them there and then.

It may not be directly life-threatening, but it can't be good having your heart jumping all over the place?

Good luck with the double ablation. Would love to know how it goes as that may be me when the drugs stop working.

Koll

[wal4d in reply to Hidden]

sorry i haven't replied sooner - have been waiting to see what the longer term effects of the last ablation. had my fourth attempt at ablation, as usual the misfires would not happen whilst on the table but the EP decided to have a go at the slower beats that were causing most concern and ablated the general likely area of trouble. was fine afterwards for a month but now they have returned - not as bad as before - and have had a couple of good patches. still uncertain about the longer term benefits but will be discussing with my cardiologist again soon.

regards