I have had an extremely bad night - most of it spent in A&E . For third night running,PAF reared its head. Began at 6pm Friday and by 9pm I rang A&E for advice. They said advice was not given by them and I should contact 111. What a performance that was and on their advice, ended up in A&E. ECG confirmed I was in PAF but there was really nothing they could do as rate was not high enough to treat it. A&E were amazed that I have no appointment with pacemaker clinic or cardiology dept until next September. They thought my pacemaker was the culprit for my recurring PAF and are referring me back to the PM clinic. Doubt I will get an appt for a while. I know there is nothing you great folk can do, but as I am typing this at 7.20am I am still in PAF and feeling pretty miserable. Sorry, but I had to write it down.
Carol
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Carol70
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I am reading this at 08.20. I am so sorry that you are having such a miserable time of it right now. It's made worse by the dark nights and poor weather too.
There must be a way that you can get that pacemaker checked as a priority. Can your GP help? Friday night is not a good time to present yourself but Monday morning should be!! Your Consultant's secretary should be able to advise. If you are anxious then another trip to A&E may be necessary. Don't suffer in silence.
Thank you for your positive response. A&E are referring me back to PM clinic. It all takes time. I will be contacting consultants sec on Monday, but my GP is the only one who can refer me back to cardiology. It's like going round in circles with your foot nailed to the floor! Again, thank you for your advice.
Just to give you some encouragement, the bad night you've just had is surely going to get things moving for you and you'll be able get onto an even keel and put the present difficulties behind you.
you do not say what rate your AF was in A&E? If it was not fast enough to cause chest pains or faintness you really don't need to worry. I presume you are able to rest during episodes? I am your age and have a slightly leaky valve but I can still potter about at 95 for quite a while, at 115 I have to rest, and at 130 I can't do anything without feeling faint and having mild angina but as I've been checked for artery disease I don't have to worry about that either, and I assume your heart has been thoroughly checked for other problems?
I am taking a drug for rhythm control and another for rate, but my heart has been pausing now and again so I had a choice of pacemaker or ablation. I am trying the ablation as I was told the only difference the pacemaker would make was stop my heart going too slow when I was on a high dose of rate control drug. Apparently it wouldn't stop my heart going too fast which seemed a poor deal!
Thank you for your response. The rate recorded on the 2nd ECG was 80 so not really high enough although on previous recordings it has been 120. The reason I went to A&E was because of chest pain which they think is caused because my pacemaker needs altering. It has been adjusted a couple of times already. When the PM kicks in, it causes a shock like an electrical current and this
Is very painful and keeps happening as much as 6 or more times a day. I am on blood thinners (apaxiban) and (bisoprolol). Your heart condition sounds a million times worse than mine, and I feel a bit silly bleating over a pacemaker problem, but I felt so low during the night, I had to write it down.
I do not think you are silly, I would certainly be very upset with the pacemaker problem when you are expecting such a long wait to sort it out! I only meant to reassure you that trying as the PAF is it should not be a cause for worry. I guess your pacemaker is doing its job if it is kicking in when there is too long a pause between beats but shocking you at 80 BPM seems ridiculous.
I hope you are able to get help soon, best wishes, Julia
You must be really feeling down with that kind of a night of PAF. It is such a worry.
I too am the same, my heart goes fast and really slow, it's very frightening.
Everything seems worse at night when it seems like the whole world are in slumber.
I truly hope you get some help. Just a thought, do you have an AF nurse? They can give advice. If not you should ask for one next time you see your cardiologist.
I hope you are feeling better by now, but we can not help becoming anxious so never reproach yourself for that.
Thank you so much for your response. This forum is a 'god send' to folk like us who suffer with one or another kind of AF and other heart problems. I sometimes feel like I am on a roller coaster - one minute heart rate up and then whoosh, heart rate down. I so totally agree with you that things seem worse at night. Anxiety is a real problem and it doesn't do AF any favours, but being only human, yes, anxiety kicks in as well as 'bouncing heart rates'. As for an AF nurse, no, there is none that I know of at St. Thomas' Hospital, London, and I only get to see the cardiologist and PM clinic once a year. I am definitely feeling a lot better today and will settle down later to watch Strictly Come Dancing and catch up with the X factor on plus 1. Have a great weekend.
I would be very surprised if they didn't. Usually called an arithmyia nurse. Look up your hospital papers, then website then phone cardiologist's secretary.
Thank you rosyG for your response. I have already emailed the consultant's sec for her to see Monday morning. I am certainly feeling better today, thank you.
You should have a number for the pacemaker clinic. When I was not happy with mine after the first few weeks I phoned them and was fitted in that week for a check. That is what they are there for.
I do indeed have a number for the pacemaker clinic. I have already telephoned them, but was told none too kindly that if I had a problem, felt unwell etc I should see my own GP. I did that, to no avail. At least since Friday night's episode, the A&E doctor is referring me to the PM clinic so hopefully I can get checked out soon. Thank you for your advice, it is appreciated.
Carol, it sounds like you're just having the time of your life.
I think you're getting good feedback here. I'd like to add a thought: watch two things as you experience symptoms - (1) the experience itself, and (2) your experience of the experience.
By that I mean (1) to watch the symptoms themselves as though you were monitoring a lab experiment. Note things like frequency, rate, variability, triggers, etc. And (2) to watch your reactions, the experience you're having while your symptoms do their stuff. Observe yourself in the same way as you observe your symptoms: your reactions, fears, stray thoughts, progression of emotions from one to the next, etc.
Please share your observations. But more importantly, see that your symptoms don't have to determine how you experience them.
I had pacemaker fitted in September for bradycardia and had problems like you Ii went into full af 3 weeks after and went back to pacemaker clinic where they turned on af program this made it so much worse and I just felt like my heart was being beaten up all the time and I was so tired They would not see me again until 17 December so I went private to see Electrophysiologist at Leeds and he turned pacemaker right down to 50 and reduced beta blocker (which had been doubled) and results are I feel so much better no boom boom any more and they had kept saying it's nothing to do with the pacemaker!!! My advice to you is see an Electrophysiologist if you can as they are the experts but do not give up on insisting that something is wrong .
Thank you for your response. Yes, I have been back to the pacemaker clinic several times. I went to my GP about 4 weeks ago and he doubled the bisoprolol to 5mg each morning with a further 5mg if I get an AF episode. Fingers crossed it has worked - no more jolt like shocks. And the pacemaker clinic have tweaked it again. I made a fuss saying my next appointment was next September so they have given me a further appointment for 17 December and also an appointment with cardiology dept on 18 December. So far no more AF episodes so maybe the extra Bisoprolol is working. But.... as we all know, AF strikes without warning.
I hope your appointments go well I have felt so so much better this week with pacemaker turned down I felt that the fast pacing threw me into full af 3 week after implant when pm read last week I had had 5 paf episodes now pm turned down hoping af is less frequent (I am mainly asymptomatic apparently)
Good luck with your appointments and I hope your pacemaker has become your friend .
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