Help and Advice needed please: My mum has... - AF Association

AF Association

22,017 members26,781 posts

Help and Advice needed please

CEL1
CEL1

My mum has Paroxymal AF - diagnosed 18mths ago. She suffers from severe episodes of feeling unwell - symptoms always include fatigue, breathlessness, head ache, chest palpitations. She has to sit or lie down they can last from a few hours to several days . Her QOL is not good as these episodes are getting more and more frequent. Her memory has also been dramatically impaired recently. Her GP thinks that these episodes are just anxiety / panic attacks. Does anyone else have these type of episodes / are they directly linked to AF?

She recently suffered a TIA (mini stroke) as was hospitalised for 7 nights in a stroke ward. During this time she wore a heart monitor which did highlight episodes of slow AF. The drugs she had been put previously were for dealing with high AF so the betablocker was stopped completely and the Digoxin reduced dramatically. The Cardiologist in the hospital also alluded that her head aches are stress related and that she was too anxious. The hospital were not concerned about the episodes that she was experiencing and were happy to discharge her. She is back at home now but still experiencing episodes of feeling very unwell on a daily basis. Before AF my mum was fit and healthy playing golf, walking and lots of charity work. She can now barely walk to the bottom of the garden and back and we are all very worried about her memory. Can anyone suggest what we can do now? Would like to see someone privately as the NHS does not seem to be helping. Lives in the Salisbury area.

10 Replies
BobD
BobDVolunteer

Most importantly is she on anticoagulation now post stroke? AF makes us 5 times more at risk of stroke and it seems highly likely that her TIA was AF induced.

Since we are not medically trained and do not have her records to hand we can't advise on drugs etc but do suggest that you seek an urgent appointment with a different cardiologist such as an electrophysiologist who specialises in electrical disorders of the heart.

out of interest what age is your mother.?

CEL1
CEL1 in reply to BobD

Thank you BobD. Yes she is on a anticoagulation (Apixaban). She is 80.

Will be looking for a new cardiologist asap. Thank you

I wanted to scream when I read your post, how dare doctors just ignore helping your mother properly!! Yes, do go and see an electrophysiologist (EP) privately - cost £200-300. I wouldn't suggest she have any procedures done at her age, but it would be good to get her onto some medication that really helps. An EP would know what to do for the best, after the visit ask him to place her back on his NHS patient list. Also get her thyroid tested in case that's causing her tiredness - it was the case with me and now with medication for that I feel I have my life back. I was blaming my AF.

It would also be good if you could get an ECG done at her doctors surgery before going to see an EP. Then he can see exactly what's going on.

Good luck and please let us know how she gets on.

Jean

CEL1
CEL1 in reply to jeanjeannie50

Jean - thank you so much for your reply, such a relief to have found this forum. I will get her thyroid tested and also ask for an ECG - great advice thank you. Will definitely keep you posted.

My reaction too Jean- how dare they dismiss her as just anxious. This is so typical of the treatment women often get for heart related problems.

Certainly is how women are treated and sometimes not taken seriously

I saw a consultant a short while ago who said " Now let me see, how old are you, ah yes 68". Then as he walked towards me said quietly "68". I wish now I'd asked what my age had to do with the pain I was experiencing. So ageism is rife too. I'm so fed up with biting my tongue!

Jean

Definitely seek a new cardiologist privately (maybe Southampton as I believe they have an AF centre of excellence), as a prompt consultation and someone who your mother has confidence in should reduce anxiety. I had to do that and was lucky with the second one.

I am a big fan of the patient changing their lifestyle where appropriate to maintain a sense of control over their predicament and hopefully thereby reduce anxiety/AF/any other chronic ailments - a new activity could help. When things have become a bit better, after checking with the medics, you might also suggest she takes Magnesium Taurate & CoQ10 - best to have a simple blood test to check her levels first; this will need to be done privately by posting the blood to a company such as BioLab London and the magnesium one needs to be 'red cell' test not the one a GP would normally do.

My wife also had a TIA last year with a week in hospital and after 12 months she is doing well cognitively but still lacks energy - maybe the drugs she is on. Recovery is a slow process but I believe minimising stress is important to allow the brain to focus on rebuilding any damaged structure.

Hope she feels better soon.

These are scary symptoms. I am not your mom and don't have all her symptoms but I can describe what has happened for me.

I was diagnosed almost 2 years ago with PAF and am on Apixaban as well as a blood pressure med. My episodes are monthly on average, heart rate goes beyond 160 - I don't know how fast - my monitor doesn't keep up. I have palpitations, feel very unwell, weak, extremely short of breath - like I'm going to faint if I get up. My cardiologist has seen me at my worst and described me in his report as "severely symptomatic." I am on 2 propafenone stat (right away and 1 after an hour) and it's best for me to either stay in bed or in a chair until normal SNR which is 2-3 hours later. I am very tired for a day or two. I don't even want to think about what would happen if I didn't have propafenone to stabiize me. I don't want it to get worse either. My cardiac nurse friend says AF travels the same path so symptoms tend to continue. I am 76, have a highly-rated EP and am on the list for an ablation. He thinks I am a good candidate.

I am not making any recommendations, just saying I have similar symptoms and what has been prescribed for me.

marcyh

Hi

The Dorset Heart Clinic based at Royal Bournemouth Hospital shouldnt be too far for your Mum. We come under Salisbury healthcare and my husband is under their care for his AF.

Hope you are able to arrange an appointment quickly. Best wishes.

I am outraged about the attitudes shown towards to your mother. There is good advice on here which I can't add to, but I am delighted you are taking an active role in her care; she needs someone fighting her corner! Please let us know how she (and you) get on.

You may also like...