Hello all, i am at my wits end and dont know what way to turn for the best. For the past week i have been in persistent afib HR peak reaching 130 along with angina if i climb stairs etc, drops to 95 sitting still and angina pain reduces. Other heart conditions: enlarged heart, hypertension, blocked artery along with angina. The only medication i am on is Verapamil and apixaban. Was put on this medication April this year which really helped at first eg less longer lasting severe Afib that would usually prompt a+e admissions. Now Afib is constant. NSR seems to be a thing of the past. Went to see GP yesterday requested some medication to help stabalize irregular HB to get me back to NSR. He refused of course and said that i would have to wait until i got to see my cardiologist in clinic. Thing is with the present NHS crisis its going to be quite some time before i get to see my cardiologist in clinic. GP also said to keep an eye on my HR because i could go into cardiac arrest if afib got worse. Now if that happened its bye bye to this world because there is no way an ambulance would get to me on time to help me given the present NHS crisis.
In the past, mid april this year after admittance to hospital for 3days, via a+e the consulting cardiologist did advise my cardiologist in discharge letter to prescribe Flecainide. As of yet this has not happened because I am still waiting to see my cardiologist in clinic.
So confused as to where to turn next. Any suggestions would really be appreciated.
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dragon51
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I'm so sorry you are in such a state, it is very worrying for you especially as your GP sounds pretty useless. Can you phone your cardiologist's secretary, explain your situation, and ask about the Flecainide? If not then I'd go straight to A & E. You need evaluation and treatment now not some vague time in the future. Good luck.
hi Dragon, I am quite new to HF (6 months) so not a lot of help. However, I wanted you to feel heard so I am posting. Could you phone Cardiology at the hospital? They would be best placed to advise you quickly.
Hi dragon51, sorry to hear you are not getting anywhere. I agree with Mountwood and jackabee, try getting in touch with the hospital directly. Has anybody mentioned a GTN spray to you? These relieve angina symptoms almost instantaneously, but I don't know if you can use one with your condition (I'm no doctor), you can ask your chemist, and buy them over the counter.
I don't believe you can buy GTN spray over the counter. Certainly not at my pharmacy. It has to be prescribed. Also, with an enlarged heart I would suggest that would be a very dangerous thing to try.
Hi Dragon I would try and contact cardiology as soon as possible. I have found out the hard way that the episodes of A Fib cause your heart to become enlarged so it is important to control it. I was prescribed flecanaide by a senior nurse in cardiology, who presumably had discussed it with the cardiologist. The flecanaide did not help me but lots of people appear to benefit from it. It is a pity your GP could not flag this up.
I would be inclined to go back to GP and ask him quite what you are supposed to do, as you have no means of accessing any rate control meds, ambulance delays, etc, and your concerns. If you have already contacted cardiology then contact PALS. I've rung my cardiologist's secretary, always have to leave a message, but have heard nothing since, this to chase up an appointment that should have been at the end of August.
I agree. I was told exactly that. I get mild angina but was told by the hospital and my GP that I should go straight to A&E if I ever get unusual chest pain or breathing problems.
My sister recently had breathing trouble and high heart rate and was admitted immediately to hospital and was kept in for full investigation.
Hey there. You sound very much like where I was at around 15 years ago. My Afib went through the roof at one point and my heart rate was up to 250 bpm at some points. I didn’t/don’t have an enlarged heart but once that Flecainide starts to work, you will notice a massive improvement. I was on the lowest dose and it actually made things work. Once my dose was upped to the point of it taking hold, I went back into NSR and I could literally do everything again. Exercise, work, everyday life etc.
You aren’t going to drop dead suddenly! Relax. Calm down and realise that although this dreaded afib is an absolute nightmare, you aren’t going to get killed by it! No way.
Now I understand the abysmal service we are getting at the moment with our NHS being dismantled the way it is. Unfortunately you’re going to have to educate yourself as much as you can with your own condition. Are you taking or can you get your GP to put you on ACE inhibitors? I’m not in any way a medically qualified person but I did educate myself on the subject as much as possible and do know that a good ACE inhibitor such as Ramipril will help things and actually can revert an enlarged heart in some cases.
I can surmise at what my EP cardiologist would have prescribed for you in your case and I am thinking along the lines of an ACE inhibitor, a good beta blocker, a blood thinner and if things were OTT then Flecainide and would have watched things very closely. I know we’re not in the same place as we were when I was getting my problems but try and get as much info as you can and also TRY and educate your GP too on it! YES - they need educating on this subject too as most of them don’t have a clue on cardiology. I was fortunate that my own GP had afib himself due to a faulty aortic valve.
Now please at least, today, now - stop worrying so much. Easier said than done I know but 130 bpm is really not that high - honestly. And you WILL get better and you WILL get through this.
I am sending you my thoughts and hopes and best wishes. ❤️
Has your cardiologist noted anything to you that you may need an ablation?
Google that term to learn more, or is a procedure at times done to help with AF.
I have a very different medical and cardiac situation to you, but I have had what’s called an “AV node ablation.” However, I also have a specialised pacemaker called a “CRT-P,” so again, our medical histories are very different.
I won’t go further into mine, just trying to give some helpful references here.
For constant, persistent AF, ablations are often done. It’s more than medication, of course.
I hope this has helped a bit, and best of luck to you.
Hi Dragon. Your symptoms sound like what I was experiencing 18 months ago. My cardiologist is at the Royal Brompton& Harefield where there are fully trained arrhythmia nurses who are a marvellous resource for patients. Do you have arrhythmia nurses at the hospital you attend? If you do I would strongly suggest you speak to them. Make sure your breathlessness doesn’t get worse and you don’t end up falling over with dizziness and hurting yourself as I did. I have taken Flecainide and found it really useful. For some reason after some years it caused heart block and I was taken off it but I had been on it some 20 years. Take care Dragon and let us know how you are getting on.
Sorry to read about your concerns. Have you tried to see another GP in you surgery?
As someone suggested, call the cardio consultant secretary. I have found doing so can expedite appointments. Better still, get someone (family/friend ) to call on your behalf, this can more effective. When you have chest pains, then call 999. We know the situations with ambulance (most are stuck in AE), it may take some time. Better still, if someone can drive to the hospital, then it may quicker than waiting for an amb. AE are swamped, but do not let that stop you. Instead, be prepared for a long wait : pack a small bag, take phone, bottle of water, small amount of money, etc
I have had persistent AF for almost 20 years and it's good that you are on apixaban as that reduces the chances of stroke and heart attack. I have a GTN spray and also take a beta blocker which helps to stabilise my AF and stops it racing - but everyone if different! So you do need to see your cardiologist. Some suggestions: as others have said if you could go to A&E if your symptoms are worrying and you SHOULD be seen by a cardiologist - eventually; you can ring your local pharmacist for advice; there is an AF support organisation so google them; ring 111 - they may say go to A&E. From experience A&E staff, para-medics and ambulance staff will not blame you for using their services. It's your entitlement - and better safe than sorry!
Pleasw go back to G P , ( call leave an urgent msg with reception or E msg or ask for URGENT G P Call back don’t wait for face to face with G P) msg that you have afib 24 hours per day, that you need an Urgent priority ( fast track) referral to Cardiologist .
Are you using a afib monitir that records your heartbeat , with an APP or on IPhone? . Pay monthly . If not . Google best reviewed one! , get on it . If your afib is beyond what is stated ( you can google it) bypass your G P waitlist . Go to A AND E , they will monitor you . They can refer your to Specialists if need be . If it does not resolve , in 24 hours , or period A and E advise ; GO BACK . Don’t sit and do nothing .
What is NSR ? (We are not Drs so we don’t know all abbreviations , we are on here to learn as well as communicate. 😊 Good Luck .
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