I’m quite new to AF and we have issues locally with delays for cardiology appointments so I had to go private.
I just wondered how you all who have nhs cardiologists and cardiology nurses manage your condition as I feel a bit in the dark over what I’m meant to do to monitor and control my paroxysmal AF.
I’ve had three admissions to A&e since last October when I go back into AF as my heart rate just goes so high.
Jo
I am similar, living in Leicestershire.
Can I ask ask what feelings bring you to feel the need to list A&E? I only went once, and that was from a high heart rate that I found both frightening and debilitating. Looking back, I suspect nerves added a lot to my heart rate, although I can never know. Since then, I have coped better with, initially an en extra dose of bisoprolol, but later an altogether lower heart rate (from the AF or from getting used to it, I shall never know), and sitting tight.
Steve
If you take your blood thinners religiously then there’s no need to panic and go to a&e. It’s horrible but just get through the episodes. I’m lucky in that I go to Papworth, the cardiologists there are the same people who see people privately. I’ve had 3 ablations and awaiting the 4th. I’m so grateful we have the NHS good luck
I went as it was soon after my ablation for atrial flutter. I was instructed to stop the 5mg bisoprolol but within a few days I had very fast AF, phoned the ablation nurses and was told to come straight in. They were shocked and sent me straight to see a consultant who put me down for emergency CV, which proved unnecessary as his reassurance along with 5mg bisoprolol stopped the AF and it then stayed away for over a year.
Like you, I am ever grateful to the NHS. Luckily, in Leicestershire, the cardiology and ablation clinic is in our Glenfield Hospital, which is an exemplary hospital, too.
Steve
If you have chest pain, dizziness, fainting or severe breathlessness you need to go to A&E, if not you don’t, regardless of the rate. You should have been given medication to lower the rate in AF (beta blocker or calcium channel blocker) and possibly medication to stop or reduce episodes of AF (anti arrhythmic).
There are many things you can do to discourage your AF. I suggest you go to the AFA website and read the helpful leaflets on understanding and managing AF. It’s good you’re wanting to be proactive because tbh many medics don’t take AF very seriously.
There are a number of gadgets for monitoring AF but some people can become obsessive about it. It is useful to know how many episodes, how long, and average HB so you can make a case for progression of your treatment if you want to.
Hope that helps.
Hi
Reading all about folks going to A&E I'm suspicious about unless they have palpations, angina, or flutters with it.
Because I never called the Ambulance or later rung my St Johns Alarm with 186 H/Rate, breathless on exertion, fatigued and wanting to sleep. On Metoprolol which I said I did not want because of breathless back in 2008-9.
But it may have ironed out and changed me from the above med.
Instead I continued to suffer. I couldn't exert myself.
At 1 year 1/2 I demanded a H/Specialist. She had a 24hr H/Monitor prove my experiences. Yes 185H/Rate Day but 47avge bpm Night but it gave my pauses in the night.
Changed to Bisoprolol. Again H/Monitor. 156H/Rate no breathless or pauses.
Left at 156 H/Rate Day.
BBs dont control my rapid H/Rate.
Private H/Specialist introduced me to CCB Diltiazem 180mg. But brought me down rapidly within 2 hours to 51!.
Reduced this to120 CD in AM.
Bisoprolol was brought down from 10mg to 2.5mg for BP.. PM.
Now CCB Diltiazem is controlling my H/Rate.
And take 110mg PRADAXA x twice Day. My anti-co.agulant.
I received No Follow after Stroke! Not good enough.
I agree that medical intervention should be easy to stop the cycle of deaths, information to patients on what stage should an emergency ambulance be called.
My plugs were all aligned on my chest etc to monitor my heart on Day 4 but they were removed, I was sent for Carotid Artery Scan then transferred to my local hospital on Friday late afternoon and never to have the monitoring done. Discharged again whe I was seen by Speech Therapy and Occupational Therapist for right hand movement (Dropsy).
Could all this have prevented heart damage which I have.
cheri JOY
Hi
I have always understood that Flec.... do not stop AF but alter the irregular beat to closer to normal. They won't end the episodes. That's why it is so risky.
I feel the CCBs which are rate regulators should be used in the hospital setting as they work so well.
cheri JOY
As I have posted here before, after the lowest dose of Bisoprolol proved too much for me to take daily we found an EP on the AFA site and he introduced me to having a smart phone so that I could get a Kardia and the app and after I sent him a reading of my heart in AF, he sent a prescription for Flecainide to my surgery for me to take as a PiP. It was private but I didn’t get his bill for ages and it was certainly worth it! As episodes increased I was given Flecainide to take regularly and it works well as no episodes for over a year and half now.
I never saw a special nurse and only saw two different NHS cardiologists once each!
Yes I know that problem, Our local hospital had been unable to recruit a cardiologist for 14 months and still hadn't when I was first diagnosed so I organised a private appointment too. As you consulted privately with either a cardiologist or Electrophysiologist (EP) a cardiologist who specialises in AF and other arrythmias, ask if you can go onto their NHS list.
What was the high heart rate that prompted you to go to A&E? Once they get used to this disease people with paroxysmal AF manage to ride out episodes at home unless they have a very high heart rate which continues for a long period, they have chest pains, or are dizzy or feel like you are going to black out or do black out. Try yoga breathing to calm yourself. Like you I became so poorly in the first months I called out paramedics and was taken to A&E. Now I try and avoid it as much as possible.
What medication have you been prescribed? Sometimes this can need adjusting so always contact your GP or specialist if you have debilitating side effects of your condition changes.
If you are unable to go onto the NHS list of the private consultant you saw I hope you are still on the list to see an NHS one. It might be wise to check by asking your GP and then ringing the department to see if they have received your referral. Things do go missing or get overlooked. At the same time ask if you can get a cancelled appointment or a no show appointment - in which case the department will contact you if someone cancels an appointment or doesn't show for their appointment - just tell them how long it would take you to get to the hospital.
The best thing to do is try and keep calm and not get over anxious and stressed - easier said than done I know. If you can see if you have a trigger for your AF -not every one does but you may find that Alcohol, Caffeine, Exercise or large meals and especially anxiety can make things worse.
Good Luck and keep in touch to let us know how you are getting along.
Hi
185 and 156 on the heart monitor is reading "no control of heart rate.
Metoprolol and Bisoprolol were not doing what the Dr and Specialist were aiming for. But never-the-less I had 3 operations (not heart) in front of me and apart from Thyroidectomy for Thyroid cancer which had to done regardless, these other 2 would not be performed as my rapid AF heart rate was over 100.
However the Locum new referred me to a reknown efficient but private heart specialist who proved interested in me.
BBs not good enough to control my H/Rate.
Introduced CCB Diltiazem. 1/2 dose 180mg sent it down to 51 in 2 hours!
For last 2.1/2 years ..
AM Diltiazem 120mg CD to control h/rate Day (47bpm avg my Normal Night Rate) 60s now.
PM Bisoprolol 2.5mg to control BP. 120-135. /69-79
PRADAXA 110mg x twice day.
That's me controlling my first diagnosed AF Rapid and Persistent.
Try with care CCB Diltiazem Joolivia.
cheri JOY. 75. (NZ)
I've had 2 A&E admissions. My first experience of an arrhythmia I was away on a training camp with my horse so I rang my GP who said if my HR was under 100 not too worry. It was well over that but I decided to finish the camp, drive home and if I still felt odd I'd see my GP. I tried to ride but couldn't! Saw GP who did an ECG and rang for an ambulance! Second time was last month, I woke up, chest thumping, couldn't take HR or BP as HR was so fast and irregular, waited for half an hour and then got OH to drive me into A&E. I was immediately triaged, had ECG and taken to resus. My HR was 150 but it was the ECG that really was of concern and I spent 15 hours in resus whilst they tried to get me stabilised then moved to a cardiac ward. The reason I'm posting this is because I discussed "when to go to hospital" with the arrhythmia nurse and she advised me to see if it settles in half an hour but if I feel at all unwell to go to A&E, better safe than sorry. I think this is one of the really worrying things about having an arrhythmia, I'd had two years of nothing followed by the odd short episode of "something" but I didn't know what, followed by a serious episode that required treatment and a huge change in medication. Follow your gut, folks. If it feels as if something is different and possibly serious, get it checked out.
I agree with you - none of us on here should Judge others for going to A&E as AF is a scary thing for to live with
thank you for sharing
Jo
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