Hi, I have been diagnosed with slow Atrial Fibrillation since October and still waiting to see a cardiologist. The doctors have given me Apixaban.
I have struggled with the symptoms and seem to have episodes every other day especially in the early hours of the nights.
I have had to cut hours down at work as I’m exhausted. Has anyone else had to cut work down or claim limited work capability. I am only 41 with two young children and finding things difficult. Any advice greatly appreciated
Hi and welcome. Yes AF can sap the energy and it is hard going. As your AF is nocturnal may I suggest two things, could you have sleep apnea? Ask your GP for a test. The second is posture - lying prone can irritate the vagus nerve which can trigger AF. Experiment with raising the head of the bed, see if lying in a different position makes it better or worse? Also look at what you eat and when. Eating late in the evening can often trigger AF so experiment with eating a smaller meal and leave at least 3 hours between eating and going to bed, full stomach can trigger AF if lying prone.
Some of that may help but at the end of the day you do need to see a specialist cardiologist and sooner rather than later. Any chance you might afford to see one privately? Cost of consultation is usually around £200-300 in UK, tests would be more but they can often be done on the NHS. If you choose a specialist who works in both private and NHS practice you can usually transfer back onto the NHS list and see the same specialist. You don’t get treatment any faster but at least you can have the conversation and know your options and try medications?
Hope some of that helps.
How frustrating that must be for you. I have no experience of work being affected or benefits available. I would contact Citizens Advice. Also ring the AFA helpline 01789 867 502
I'm afraid the wheels turn exceedingly slowly in the NHS these days and sadly he (or she) who shouts loudest gets attention somewhat more quickly.
Good that you have been started on an anticoagulant. I feel you must see your GP again and explain how debilitating the effects are for you. He/she may be persuaded to request a continuous heart monitor for 24 /48 hours. I'm pretty sure GPs can also request an echo cardiogram. This would mean the cardiologist would have more info and be able to start appropriate treatment more quickly.
Do you know which cardiologist has been sent your referral? If so ring his/ her secretary.
Ring appointments via your hospital switchboard to try and get a time line.
Consider a private consult although I know in my area if it is a first contact, your NHS referral may be cancelled so check this out first as you don't want that! I know a private consult is expensive, up to £250 here, but if you've had to cut down hours at work, may save money in the long run. But, do check your NHS appt will still be in the pipeline. Try and get as many investigations done by GP first as any tests will cost on top of that. I realise a private consult may be impossible. Basically make a fuss.
After my first episode of flutter diagnosed in emerg I was sent home with apixaban only which is important but that was it. I had to wait 7 weeks to see a cardiologist but waiting that time was rough. I had fast heartbeats at night and slow pounding heavy heartbeats in the day. As CDreamer mentioned about the vagus nerve, I'd go from standing to lying down and my heart went crazy. I was exhausted. It was so bad that before that 7 weeks was up I went to emerg again because I was getting breathless and not sleeping and I let them know that. A different doctor was on that day, took more time and did a couple more tests plus prescribed a rate control medication along with the apixaban until I saw the cardiologist. Finding a way to see someone else or telling them it's intolerable with details makes a difference. They say it won't kill you and that is true you will be okay, but until you get further tests and answers it can sure make life miserable.
Good advice!
keep nagging the gp about the referral and find out the name of the cardiologist you’ve been referred to. Then phone his secretary ( just ask to be put through to his secretary via switch board), speak with her about your age, symptoms and ask how long you are likely to wait.
If that doesn’t help things move along then if you can afford it see the cardiologist you’ve been referred to privately. I was in continuous AFib for 3 months after my heart attack and was told that a cardio version has a much better chance of working if you haven’t been in AFib for 12 months. After that it’s harder for your heart to convert.
Good luck
I have had episodes at night and read that elevating the top of the bed about 6 inches helps. I can say it’s helped me since December 2022 I’ve not had an episode at night. You can buy leg lifts they’re like stackable castors on Amazon or eBay. That got the legs at the headboard end up 3 inches and have added a foam bolster inbetween the base and mattress for another kick up to 6 inches. You may need some for the middle legs for stability as well
Hi Disneydi,
I really sympathise with what you’re experiencing right now and had some very good advice here. I really recommend trying to see a cardiologist sooner, if you are able, privately, as a few have said. Lots of us unfortunately have had to do this, rather than wait months like you have had to do so far. Once you have seen a cardiologist, they will be able to hopefully give you a way forward to limit the episodes, with medication or a procedure perhaps.
In the meantime, have you any idea what might be triggering it? though often it is difficult to tell. If your Afib is more at night, it could be due to digestive issues while you sleep, as the heart can get ‘irritated’. Afib during sleep is quite common for a lot of us. We have to be mindful of avoiding certain things, like eating too close to when we sleep, i.e leave at least 3 hours before sleeping, after eating. Don’t eat too fast or too big a meal…try to avoid too many different carbs during a meal. Sadly, it’s best to avoid alcohol altogether if you do drink, as that is also often a trigger. Also avoid artificial sweeteners and MSG.
Have you had a full blood test done recently too by your GP? Are all your electrolytes in balance as this can sometimes throw things ‘off’ and irritate the heart more.
You say your AF is slow. How are you monitoring that and what is the rate?
Hi there, not really sure what specific thing is triggering them and this week I feel like they are not stopping. Continuous palpitations and breathless. I must say night times are not the nicest especially because I feel faint with them.
I think I need to speak to doctor again and thank you to all who replied. I will take on board everything said. Xxx
Do you know what your heart rate is? Some of us have smart watches such as Applewatch or Fitbit and you can also buy a handheld ECG monitor called a Kardia that will tell you what might be going on?
If they are making you feel breathless and feint especially, is it possible to try and make an appointment with your GP to explain how you are feeling? They will be able to check your pulse and might be able to give you something in the interim, to help, while you wait for an appointment.
If you can push to it, it would really be worth trying to see a cardiologist at your local hospital privately. Their secretaries are usually the ones who arrange appointments and they’re usually all on Google if you do a search.
Welcome to our forum, you will get lots of support here so ask any questions and bear in mind that we say there is no such thing as a daft one.
Some of us people with AF find that if we try to sleep on our left hand side in bed it will trigger AF. I can only sleep on my right side or my heart will take off bumping in my chest.
Look to your diet too and avoid eating or drinking anything which contains artificial additives. Artificial sweeteners were a sure trigger for my AF. I avoid them like the plague and am so much better now.
Jean
Yes. Like you - AFib with a normal heart rate. I too had most episodes began just as I lay down to sleep and lasted all night and I was exhausted.After I caught Covid, my episodes increased to every other day, which was ruining my life.
I am a teacher and need to be on the ball all the time, and I just couldn't keep that up with no sleep and such a high AFib burden.
After Covid, rhythm control drugs - even the big hitter Amiodarone - did not work for me, so I went to Japan in January and had surgery there. Minimally invasive laparoscopic ablation with excision of the Left Atrial Appendage.
I am relatively close in age to you, at 55, so I understand how horrible it is to be working and coping with this.
Knowing that AFib progresses, I just did not want to waste time with traditional catheter ablation and its failure rate, nor take blood thinners my entire life.
No AFib and no anticoagulants now.💖
It was brilliant.
Worth researching.
Also, get tested for sleep apnoea. That is very important!
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