Is my breathlessness curable? - Atrial Fibrillati...

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Is my breathlessness curable?

2000RedRose profile image
33 Replies

Hello everyone out there .- Do you think there is a non surgical cure for PAF now causing really bad breathlessness when walking outside,causing me to fear attempting to walk even 15 metres to the local post box.Fortunately I have an obliging husband .I am okay indoors taking things very slowly .I have been on Rivaroxaban ,Verapamil and perindopil.I also have PotS and take Magnesium Taurate,Vit.D3 and B12 having read the advice of my fellow sufferers here,as being 82 I’ve been advised by Medics that theyve gone as far as possible with me. Any advice will be gratefully received.

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2000RedRose
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33 Replies
Drounding profile image
Drounding

Sorry to hear you're feeling breathless. Nobody here is medically qualified to assess you and the drugs you have been prescibed.

You might however consider getting a second opinion from another cardiologist.

2000RedRose profile image
2000RedRose in reply to Drounding

Thank you ,but I did have a consultation privately with a Cardiologist and a specialist Electrophysiologist Cardiologist who agreed with the NHS advice.

jeanjeannie50 profile image
jeanjeannie50

I used to feel that way and blamed my lack of breath and tiredness on my AF. Then it was discovered that I had an underactive thyroid. I'm so much better now that I take pills to right that.

Have you had your thyroid tested?

Jean

2000RedRose profile image
2000RedRose in reply to jeanjeannie50

No Jean but that is very interesting for me .I usually just have a basic annual kidney blood test,so I will follow this up so many thanks.I appreciate that.Warmest wishes 🌹

john-boy-92 profile image
john-boy-92

Have the medics checked your blood oxygen?

2000RedRose profile image
2000RedRose in reply to john-boy-92

Thanks for the idea John boy ,but I just bought an oximeter 3 weeks ago and it always seems O.K.

secondtry profile image
secondtry

AF cures are not easy to prescribe & drugs can of course have side effects.

My suggestion would be to focus on small lifestyle improvements and keep persisting. You don't say what the NHS advice is, if any, to deal with the breathlessness but avoiding mouth breathing can help; instead breathe slow, light and deep through the nose only (ref: James Nestor's new book 'Breath' & Patrick Mckeown of Oxygen Advantage - also interviews on YouTube if you don't want to read the whole book). Apparently it has worked well for people with asthma & other lung conditions - if interested in trying this, you must check with your medics first that they have no objection and always make changes slowly.

2000RedRose profile image
2000RedRose in reply to secondtry

Thank you Secondtry, I will check out the 2 references you advise.Quite interestingly ,I did notice a mention of nasal breathing and for the last 2 weeks I have followed the advice to tape the mouth with a short piece of micropore tape in bed,as I did tend to breathe through my mouth when sleeping .Can’t see any difference so far and certainly it isn’t sexy ,—but hey ho !!— the bedroom is quite dark !I don’t get advice from the NHS, so very happy to have found fellow sufferers and advisers here, mostly very positive and often with humour.Take care and thanks for the concern. 🌹

secondtry profile image
secondtry in reply to 2000RedRose

Do persevere with the mouth tape at night (despite the image!) as evidently sometimes it takes weeks or even a few months to re-engage a nose properly. I find (after a few weeks) I wake fresher and with an unstuffed nose. I also hope nose breathing at night helps me nose breath more in the day when I am concentrating on something else.

2000RedRose profile image
2000RedRose in reply to secondtry

Will persevere as you suggest and maybe if it does help daily nose breathe ,I may see an improvement.— Have to be optimistic !RED 🌹 Rose

Treschere profile image
Treschere

Plus if you can, get a mobility scooter as this will enable you both to go out together and improve your quality of time outside.

2000RedRose profile image
2000RedRose in reply to Treschere

Ha ha — that made me laugh as you sound like my daughter, and I told her I didn’t want to look another 10 years older yet!!! —It may come to this but in the meantime I’ll struggle on and hope I may find another solution .thank you for caring.Red 🌹 Rose.

Treschere profile image
Treschere in reply to 2000RedRose

One of my friends is in her fifties and if wasn't for her scooter she would be tied to her home. There is sometime about not letting pride stop you from living xx💕

2000RedRose profile image
2000RedRose in reply to Treschere

Yes Treschere I am probably being unintentionally vain but I am very fortunate to have my husband who is a willing chauffeur (without a peaked cap) for me in the meantime. Not many exterior visits now with Covid —19 and I’m O.K. slowly moving about the house.Going up our inside stairs is the biggest bugbear, but a scooter wouldn’t help there . 🌹

Buffafly profile image
Buffafly in reply to 2000RedRose

Stairlift? Or is that not a good look either? ☺️🦋

Palpman profile image
Palpman

I find it strange that so many of us suffer from unexplained breathlessness.

I have no blockages and only take Flecainide and atorvastatin yet I get very breathless on exertion such as climbing 1 flight of stairs or just tieing my shoelaces.

Surely doctors can find the cause of breathlessness. They just shrug their shoulders.

Treschere profile image
Treschere in reply to Palpman

yes I have the same climb the stairs sometimes no problem, climb them another time and having to try and control my breathing it slow it down for ten minutes.

2000RedRose profile image
2000RedRose in reply to Treschere

Yes Treschere —I have 18 steps from bedrooms to lounge each day and do have an odd good day, when the breathlessness isn’t quite so bad ,but always there unfortunately ,so be thankful to have days without it during a climb.Red 🌹 Rose

2000RedRose profile image
2000RedRose in reply to Palpman

Yes Palpman ,my sentiments precisely. I think we’ll have to wait for a brilliant medical mind to come up with a solution like Drs.Lister and Fleming! Meanwhile we’ll just have to accept this exhausting condition and be thankful for small mercies!!!All the best 🌹 Red Rose

S11m profile image
S11m

I "have" AF (in remission after 3 cardioversions and 2 catheter ablations) and I had bradycardia (treated with a pacemaker).

I would imagine that breathlessness is the body's reaction to hypoxia... if you get breathless without hypoxia, perhaps something else is wrong?

Do you feel faint or turn blue (cyanosis).

I feel faint and get cyanosis without getting breathless... I would like them to turn up my pacemaker (my late wife wished she had a remote control for it).

Palpman profile image
Palpman

My O2 is 98% and I do not turn blue at all yet my breathing is laboured at times. My BP is also normal while breathless.

I can walk for miles on the flat though with no problems.

I’ve just been prescribed ( by the Cardiac Consultant ) a Diuretic ( water tablet ) to ease breathlessness, I have AF and have been told by Consultant that there’s no point in any more procedures as they won’t reverse the AF. So they are treating any symptoms as they come along including the breathlessness

You could ask the Cardiac Professionals if this would help. I know every case is different but it’s worth asking

2000RedRose profile image
2000RedRose in reply to

Hmmmm Jessie at the beginning ,3 years ago ,when diagnosed with PAF I was prescribed by the Cardiologist 2 different diuretics to reduce my BP.then the quantity was increased, causing my BP.to go below 100 so I collapsed and ended in A&E where the diuretics were stopped as I was told I didn’t need them.They certainly didn’t make any difference to my breathlessness, but as you say -everyone is different,Hope it works for you !All the best .Red 🌹 Rose

doodle68 profile image
doodle68

Hi Rose 😊 I am having an increasing problem with intermittent breathlessness. It used to happen only during my long regular episodes of P-AF (something to do with loss of 'Atrial kick' I understand ) I also get breathless before an episode of P-AF and when I have long runs of PACs (ectopic beats) .

Now it seems to happen for no reason.

I still keep up my daily brisk walks and exercises.

I have mild asthma too which adds to the confusion but I don't think breathlessness is related to that.

I told the EP I saw recently who seemed unconcerned.

2000RedRose profile image
2000RedRose in reply to doodle68

How lucky you are Doodle 68 ,to be able to still manage daily brisk walks and exercise.— be thankful - I wish it was me.!! Your EP sounds like the one I saw Privately for 25 mins .for £200 - Duh ! Long may your breathlessness be intermittent .Enjoy your daily walks.Red 🌹 Rose

Auriculaire profile image
Auriculaire

As we age our mitochondria function less well . These are little structures in most cells of our bodies ( I think not in red blood cells) that are responsible for turning food into energy among other tasks. They are particularly numerous in muscles and especially the heart. If the heart is not working very well as a muscle it will not pump oxygenated blood to the lungs and other bits of our bodies that need it as efficiently and breathlessness can be a result. Taking a supplement of Ubiquinol (a more active sort of Co enyme Q10) might help as this is needed in the metabolic cycle that happens in the mitochondria. Co enzyme Q 10 is produced in the liver but again this is something that declines with age and the consumption of statins.

2000RedRose profile image
2000RedRose in reply to Auriculaire

Well Auriculaire ,that was a very technical description of suggested causes of breathlessness .From your heading I thought it was going to be caused by a hearing problem so my ears cocked up as I have required hearing aids for 10 months now.However back to your suggestion -I did start on Bio —Quinone Q10 100 mgs for about a month but stopped as I didn’t find any difference re. my breathlessness ,so I still have a half packet in my cupboard ..Interesting theory though . I did buy an oximeter that always records a correct reading. Red Rose 🌹

Auriculaire profile image
Auriculaire in reply to 2000RedRose

A month is not really very long for taking a food suppleme t. I would be inclined to try it for at least 3 months.

doodle68 profile image
doodle68 in reply to Auriculaire

Hi Auriculaire 😊 I had been taking Co enzyme Q10 for some time (over a year) and stopped a little while ago because I have had an expensive year , I wonder if this has made a difference. I might give it a try again but Ubiquinol this time.

Thank you for the suggestion.

Auriculaire profile image
Auriculaire in reply to doodle68

Ubiquinol is recomended for older people but it is more expensive than Co Q 10.

doodle68 profile image
doodle68 in reply to Auriculaire

Hi Auriculaire 😊 I noticed that when ordering yesterday but you can't put a price on health can you and if it helps it will be worth it .

I was grateful for you suggestion on taking a loaded dose of VD3 when it was prescribed by my GP for pain and mobility issues and there was an amazing change after 3 months when the pain disappeared and my mobility was restored allowing me to return to daily exercise so important for Afibbers so thank you again 😊

Auriculaire profile image
Auriculaire in reply to doodle68

I am so glad you had such a good result! Although I often think people will say "Oh there she goes again banging the vitamin D drum" I am convinced that vit D deficiency can be at the bottom of a myriad of health problems. The problem is perhaps in the name! It is not a vitamin but a type of hormone. Maybe if it had not been wrongly labelled a vitamin people would not be so dismissive of it.

Psizzle profile image
Psizzle

Standard Process makes a supplement called Cataplex B (all natural) that is supposed to really help with Afib, arrhythmia et. Maybe worth a shot

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