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Mums become totally disabled with breathlessness

amandawhaley profile image
11 Replies

My mum has has af for 6 years and was eventually treated with a pacemaker after a year her symptoms became the same as prior to the pacemaker. in the last year she has become very breathless. She has also been to emergency with chest pains. which she has been given a spray. and now tablets.

She has had an angiogram, chest xray and numerous ecgs with nothing showing up. she is 75 years old slim and active (before this) The consultant who fitted the pacemaker has said there is nothing more they can do.

She has high blood pressure which she takes medication for, she is also on statins and warfarin and now anti depressants. Could the breathlessness be caused by drug interaction . It is so bad now she cannot even walk across the room without feeling awful. She also has pounding heart at times of rest for no reason.

Any suggestions i hate to see her so low now.

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amandawhaley
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11 Replies
PeterWh profile image
PeterWh

Insist on a referral to an EP (electro physiologist) who are cardiologists who have specialised in arrhythmia. They are the electricians of the heart so to speak.

Unfortunately a pacemaker does nothing for AF as AF is the fibrillation of the left atrium whereas the the pacemaker controls the left ventricle. She may have been given a pacemaker for another reason.

If she is on nothing else medication wise then investigate the statin as that can have bad side effects for some. There are loads of excellent posts on the Cholesterol Support forum on HealthUnlocked. Statins are not the universal utopia that was once thought.

I reacted badly in a number of ways when taking simavastatin but by luck it got picked up and have controlled cholesterol level purely by diet for over 21 months.

amandawhaley profile image
amandawhaley in reply to PeterWh

Hi Peter thanks for your reply, very helpful and i will certainly mention the statins and the referral to the EP when we see the cardiologist at the next appointment on Thursday. i am certain that she was given the pacemaker at Papworth to treat the AF as i was with her at the consultation. She had already had ablation and to be honest they seemed to think the pacemaker was her best option. i am wondering why they gave her a pacemaker if it was not really going to help with the AF long term?

It is so worrying as she calls the paramedics and ends up in A&E regularly, and they run all the tests and send her home.

She is so depressed about it now and just wants to give up.

Many thanks for your help though,

Best Wishes

Amanda

Carol70 profile image
Carol70

Hi there - I agree with PeterWh regarding a referral to an EP. Have you thought that possibly your mum is suffering from anxiety. I am not saying she is, but anxiety causes so many changes in the body's chemistry. Having AF is such a debilitating condition, and the more you know about it the better. Bob is an advocate of this. There is so much information on the AF website. I too have a pacemaker (I am nearly 71) after years of battling with AF. Since the pacemaker (August last year) for bradycardia, my AF seems more settled. I am on Apaxiban and Bisoprolol. Yes, I do get breathless, but manage to keep going with every day life. I too get pounding heart beats when resting, but try very hard to keep as calm as possible and do something to take my mind off it (a relaxing CD or cassette is useful) until my heart returns to NSR. I do hope your mum feels a bit better soon.

With best wishes

Carol

amandawhaley profile image
amandawhaley in reply to Carol70

hi Carol thanks so much for your reply. Mum is very anxious a lot of the time and i feel even by controlling her anxiety and depression she would feel better in her self. We have got an appointment with our local cardiologist on Thursday so i am going to mention the statin that she takes and being referred to an EP. She just hates being inactive and feels as if her life is over now.

Many thanks again,

Best Wishes

Amanda

Carol70 profile image
Carol70

Hi Amanda - I am going to quote Bob "AF will not kill you". He is,a very wise volunteer for the Forum. His responses to posts are so positive, just reading them give me confidence. It sounds like your mum is definitely depressed (hence the antidepressants) and possibly over anxious. I bet she also has panic attacks (forgive me if I am wrong) . It must be very worrying for you to see her like this but she needs your support. We must be in charge of AF, not AF in charge of us! I do hope her appointment on Thursday goes well and the cardiologist can reassure her and refer her to an EP.

With best wishes

Carol

amandawhaley profile image
amandawhaley

Oh thank you Carol that is really reassuring, I looked up EP in our area and found out that the consultant at papworth that she sees is an EP . So i don't understand why she has been given a pacemaker, he must know what he is doing. I think he also said AF will not kill you, but she says she feels terrible when she does anything much. She has always been a very stressed person.

Anyway many thanks again i really appreciate your comments.

Best Wishes,

Amanda

I have had af for a long time and have tried everything! I have now found what seems to be working for me. I have a pacemaker and it is set for 60. I take 75 metroprol twice a day with .025 dioxin once a day. I also have very mild heart failure and take a diarecic(sp) in the morning and I have cut way down on salt. I was very breathless until they diagnosed me with the heart failure and cut out my salt. The breathlessness has dissipated. And I don't notice my af at all now. I am 71 and feel good. My blood pressure is good now too. I take blood pressure med at night along with a Staten.

amandawhaley profile image
amandawhaley

Oh hi perkinsdt,

That is so interesting, how do they diagnose heart failure? Thanks for the reply

ultramarine profile image
ultramarine

The only time I have felt breathless was taking a medication for AF called Sotalol which mimics the condition in my opinion. What medication for AF is she on if any? I am on Metoprolol for now, and hope to lower it soon.

I have just recently had an ablation and feel great for it? My EP explained that a pacemaker could be needed down the track but not for this condition. (you might need to get any reports to verify this from the last ablation). One of my initial problems when diagnosed was breathlessness, which could have been anxiety, but not being so fit at that time was more paramount (I am pretty fit now) walk and do tai chi most days.

Her depression is understandable, especially when any episode cannot be proven on reaching Emergency and when this condition is hard to diagnose. I now have an ecg on the back of my phone for evidence.

You might want to discuss with her what other effects she feels at the time because there are a few and explain to her she can have another ablation if this is the problem! I do hope she has been given medication for stroke. This condition did not come to the fore until 1970 plus so it is comparatively new to Heart Specialists. It is also important she continues her exercises, this also helps depression. I am 76 and feel pretty good at the moment.

PeterWh profile image
PeterWh

Actually ablations only really started coming to the fore circa 1999 because that's when catheter ablations kicked in. However for the first 5+ years the number undertaken was much rss than today and even today they are much rarer than many operations.

zetagirl profile image
zetagirl

Wow Amanda, I think my Mum is your Mum's clone. I'm trolling all available website's to find some answers for my Mum. She's 77, active, young at heart. Had 4-5 TOE Procedures for the AF over the past 2 years then finally went in for the Ablation. This was Mid July 2017 - what 6 wks ago. After the Op she was advised best scenario is to have a PaceMaker. Got it done the next day. Best of the best Medtronics PM. Fabulous Dr's / Professors too. The following week had to go in and have the Ablation of the NV Node. The day after the PM implant, she became breathless. Have had xray / ultrasound. No fluid on heart or lung. She has a great outlook on life and no anxiety or depression. Has high blood pressure and is on Atacand, Minax, Metoprol Tartrate, Crestol, Lasix, and also Warfarin. What a cocktail! Have tried checking to see if any of these meds can counteract with each other and there appears to be no problem there. Her GP is fabulous, as is her Cardio and Surgeons, but can't find the answers. Still has pounding of the heart too. Mamma Mia! I'm going to look into this EP. Sparkie for the Heart hey! Good luck with yours and will update if any news comes my way. Don't settle....keep searching and asking questions.

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