There is hope: Hi all - I wanted to... - Atrial Fibrillati...

Atrial Fibrillation Support

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There is hope

JezzaJezza profile image
20 Replies

Hi all - I wanted to update everyone on a positive experience and to hopefully debunk some of the myths.

For context I live in the Republic of Ireland and also have private medical insurance (this is very common in Ireland). 55, male and generally fit.

I was having episodes of waking up, bolt upright, in the middle of the night with my heart absolutely racing and then a few times they were happening in the day. Went to A&E and ecg didn’t show anything and neither did follow up 24 hour holter, and so I was diagnosed with panic attacks. At the same time I was told that despite being fit and exercising, that I had high blood pressure and high cholesterol. I took immediate action to change my lifestyle - I lost and have kept off 2.5 stone, cut out alcohol (now drink 0-0 versions), cut out caffeine, properly addressed my work life balance and focused on being a better version of myself. I also bought myself an Apple Watch. I was given amlodipine 5mg for BP and Atorvastatin 20mg for cholesterol.

I still felt that something wasn’t quite right and so I went for an annual heart check up provided as a benefit by my health insurance. Interestingly they immediately saw something on the ecg and recommended I see a cardiologist!

Within 2 weeks I saw my cardiologist and she was delighted to see I had an Apple Watch because in her words “multiple studies have shown that they are accurate and reliable” When I showed her the Apple ecgs straight away she said ‘that might be AF’. I had another 24 hour holter and a full heart mri and the results showed zero signs of heart disease and not AF but SVT.

I was prescribed Donadrone (Multaq) and within 2 weeks no more SVT but still getting palpitations and ectopic heart beats. So I was then put on beta blocker bisoprolol 2.5mg and again within 2 weeks no more palpitations. I think that these 2 medications sometimes have an unjustified reputation, all I can say is that for me they have done exactly what it says on the tin!

I get full bloods done every 6 months by my GP surgery and prior to being on the Multaq it showed the statin was spiking one of the liver markers so that was halved to 10mg. Since then, all bloods are perfect and quote from my GP “blood work of a 30 year old “. No impact on the liver from the Multaq.

Side effects:

ankle swelling from the amlodipine which has now gone.

Reduced HR from Multaq by circa 5-8 bpm.

Additional reduction in HR from bisoprolol by another 8-10 bpm.

Feeling cold in the evenings (known bisop effect).

Feeling tired first thing in the morning (known bisop effect).

Positive actions I take:

I practice meditation and yogic breathing. I find the app Calm to be brilliant.

I still exercise but no longer do high intensity intervals.

I take 100mg Co-Q10 daily, vitamin C tablet and 1600mg of vitamin D (that one prescribed by GP).

when I’m cold - I put more clothes on and stop bitching about it.

When I’m tired - I accept it and take time to come awake.

Just had 6 months checkup with cardiologist and she was very happy and will see me in one year for a follow up consultation and 24 hours holter again. She also has zero concerns that my resting HR is now circa 40-42. I don’t have any symptoms of bradycardia or hypotension (BP is also now extremely well controlled). She is very happy for me to get back on the rower but just to accept that because of the bisop and bradycardia that my HR will now be capped at probably max 140 when previously I could take it to 178 with hard exercise.

Takeaways -

listen to your body. If something feels off, then it probably is.

do your research but don’t be a Dr. Google.

Take the medication every day at the same time - set alarms on your phone.

Accept the side effects and work with them not against them.

Take positive action, don’t just rely on medication -exercise, lose weight, cut out shit food, give up alcohol and caffeine (not easy I know but for me 100% worth it) and practice meditation and mindfulness.

Live your life

Best wishes to everyone on their heart journey ♥️

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JezzaJezza profile image
JezzaJezza
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20 Replies
Porageface profile image
Porageface

Have you been assessed for possible autoimmune thyroid disease and pernicious anaemia?

How have your thyroid function tests been since starting Dronaderone?

JezzaJezza profile image
JezzaJezza in reply toPorageface

Why would I need to be assessed for either of those? None of my bloods show adverse levels for thyroid tests or B12 (or other B vitamins). As I said, I have full bloods every 6 months.

Folks need to stop freaking out about modern anti arrhythmia drugs and Dr. Googling every article ever published. Dronedarone lacks the iodine moiety that is associated with thyroid and pulmonary side effects.

Porageface profile image
Porageface in reply toJezzaJezza

You said you had been given six B12 injections for low B12 levels. This raises the possibility you have pernicious anaemia. This can be associated with autoimmune thyroid disease. Neither are associated with your medication.

Whilst I appreciate your wanting to relay your good news story, you may want to consider that members here may have knowledge and experience that allows them to comment with some authority.

They may not agree with you that this amounts to “freaking out”. In general terms you may find a less confrontational approach more helpful.

Tomred profile image
Tomred in reply toJezzaJezza

Hi Jezza, im also Irish, so if, you dont google for info where do you go for info, im also on bisoprolol and multaq, certainly not a cure for me ,it does quieten af somewhat though.

JezzaJezza profile image
JezzaJezza in reply toTomred

Hi - sorry what i meant by Dr. Google is don’t go researching every article known to mankind on the various medications, life expectancy, complications, could it be Ebola and not Afib 😂 etc.

Stick to solid reputable sources such as British Heart Foundation which I think is bhf.org and also the Irish Heart Foundation irishheart.ie and of course your cardiologist.

I have found (naturally) a big difference between the knowledge of my GP and that of my cardiologist. My GP reduced my beta blocker from 2.5 to 1.25 because she was concerned that my resting heart rate was too low. My palpitations started to return and On review with my cardiologist 1 weeks later, they were pretty angry with the GP and immediately put me back on 2.5mg and lo and behold no more palpitations.

One of the main points of my post was that some folks will have you believe that Multaq and bisoprolol are the Devil’s own work and how they or ‘someone they know’ had the worst time ever’ etc. They are modern anti arrhythmia drugs that are in the vast majority of cases extremely effective. Yes there are some side effects in some people but they can (in my experience) be lived with. The feeling cold is a weird one and so is a capped heart rate during exercise. I always wear a heart chest strap when using my Concept2 rower and only do steady state exercise these days - no more HIIT for me.

Best wishes

Jezza

Ewloe profile image
Ewloe

Thank you for your message it’s making me stop and think on holiday here in a hot Madeira. I’ve been meithering lately about getting tired which is worse over here in the heat. When really I know it’s the combination of bisoprolol, reduced ejection fraction and the heat. I know I need to be on bisoprolol and you’re message has helped me put my low energy levels back in perspective.

Ossie7 profile image
Ossie7

I am on dronedarone and was on 2.5 mgs beta blocker but I was always ‘moaning ‘ about my lack of exercise tolerance . I had my 3rd Ablation in May for persistent AF and 4 months later feel fabulous ( in gorgeous NSR ❤️) . Started to withdraw slowly from the beta blocker , but advised by EP to stay on the dronedarone ‘long term ‘ or until it stopped working . Being 59 I really didn’t want to stay on it 1) due to its liver toxicity and requiring 6 monthly bloods ( not really a hardship is it !!) and 2) because who knows what the longer term effects of staying on it are ? However , your post has given me food for thought . I need to get on with my life , take the med and if it does thrown up something adverse down the line then I will stop it . So thanks for the post Jezza !

JOY2THEWORLD49 profile image
JOY2THEWORLD49

Hi

Watch for statin putting. you in a prediabetic state. Stop it when.if you need the COVID antivirus med.

You seem to have worked it out. B12 is another important check. Also Thyroid TSH, T3 and T4 total. Then thyroglubin serum and antibodies.

A friend took Vit D and his capillaries on his nose burst.

cheri JOY 75 (NZ)

JezzaJezza profile image
JezzaJezza in reply toJOY2THEWORLD49

The absolute risk of statin-induced diabetes mellitus in major trials has been ≈0.2% per year. The benefits of long term statin use are well documented in many meta studies

Did you also know that as ice cream consumption increases so does the number of shark attacks on humans? Truly shocking and it’s never mentioned on any list of noted side effects of a Mr Whippy with sprinkles and a flake! 😢

I know I’m being sarcastic (the shark thing is true but that’s the difference between causality and correlation) but this is why I don’t Dr Google my condition.

As I said I have full bloods every 6 months, not just for Multaq but also because bloods can tell us so much. I had moderate levels of B12 and ever since one course of B12 injections the levels are fine in all subsequent results. The bloods measure various thyroid markers and again all are fine. I don’t have pernicious anaemia, I don’t have an auto immune condition. What I do have is a sinus arrhythmia.

Sorry to hear about your friend and his nose, but do we really know that it was vitamin D? The risk of low levels of vit D are well known.

I leave the analysis of my bloods to my GP and nurse and cardiologist.

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply toJezzaJezza

Hi

You are missing the point about riss with statins. We all need cholesterol. Thyroxine for Ca Thyroidectomy collides with avorstatin.

My dear friend at aged 82 after being put on avorstatin was told "You are prediabetic so your diet needs changing. Drop the honey! Drop the wholemeal bread (2 slices for breakfast and the oats. Poor lady she got anxious about that.

I said drop down the statin if you want to enjoy living.

She died in January - fell in a village home trying to get herself to bed. Lay there all night o the cold concrete but carpeted floor.

Just one issue in a Science magazine proclaiming that "cholesterol is not measureable with some great points put me off". And get the statistics of money given over - earned by recruiting patients to start statins is unbelievable.

My Mum lived until 93 without them. A UTI undiagnosed in a care home did.

Vit D overdose through supplements is prevalent. I'm in NZ and generally sit outside in the sun early morning for my freshen up on Vit D and playing jingly ball with my Jaz a 11 year youg miniature schnauzer.

If you join research companies like Radcliffe, like BMJ etc Google searches come up with their research.

Not even my Pharmacist agrees with taking Statins and she is educating herself further o pharm.... products.

Remember the man who could not walk after 3 years on statins. Fit before that.

My friend with his broken capilleries was diagnosed by a skin specialist.

Did you know if you put mushrooms on the windowsill, they will absorb Vit D for your intake! I guess other items too like tomatoes.

Even you having to reduce your statin from 20 to 10 didn't ring any of your alarm bells!

Q 10 whatever can be in your diet of apples, kiwifruit, avos, fish, etc and selenium in brazil nuts, salmon, sardines and beef liver. It raised my T3 in normal range.

B12 is a separate blood test. At your age 600 would be a good level as against perhaps your Dr saying normal at 200. You don't need injections but SOLGAR nuggets 1000ug SUBLINGUAL taken dissolving under the tongue are better for you,as a large dose of B12 when you have run out is not healthy.

My thyroid levels were good and did not show Thyroid cancer but the scan did. Then no one was watching my thyroglubin levels of antibodies and serum.

Why do you think you have arrhymia?

Just reading the risks of supplementary fish oil. Interesting.

Eat fresh foods vegs, fruit, low fat meat, dairy (but I love the Magnum non Dairy Almond), etc without supplements , sunshine and fresh air.

I have a blood test 3 monthly with adding on ones cardiovascular and B12 and thyro ones.

My TSH T3 T4 is taken whenever I like.

Have a great life without supplements unless you can't get through healthy eating.

AF itself can cause fatigue.

Reading myself to play table tennis and have a god workout.

cherio JOY

Onkaparinga profile image
Onkaparinga

Thanks for your positive post . I'm in the early stages of AF diagnosis and am taking Bisoprolol 1.25mg and Apixaban 5mg. These have helped quell things but I still get occasional racing heart beats up to 140bpm.I'm 74 and try to walk 3-4 miles per day at least. Yesterday I had my weekly table tennis session and felt dreadful pretty quickly. I felt faint, dizzy and could feel irregular heart beats.....it lasted all day.

Today, everything's normal so it looks like strenuous exercise is not good for me. I've cut down on alcohol and have lost weight over the past couple of years. I'm awaiting a heart scan in 3 weeks and further advice/treatment on the way forward.

babs1234 profile image
babs1234 in reply toOnkaparinga

Strenuous exercise often triggers my AF. I always take a bisoprosal before any activity now

secondtry profile image
secondtry

Great Takeaways!!!! Eat your heart out Kentucky Fried Chicken 🤣🤣.

JezzaJezza profile image
JezzaJezza in reply tosecondtry

Phahahahahahah 😂😂😂

But all joking aside - yes live your life and if the occasional KFC or McDonalds makes you happy then you should absolutely do that.

Ppiman profile image
Ppiman

I think caffeine has not been shown to have adverse cardiac effects, and small quantities of alcohol have been shown to be helpful, although that is questionable.

Other than that - yes: we over indulge and are under-active.

Great post.

Steve

JezzaJezza profile image
JezzaJezza in reply toPpiman

I think like all things - everything in moderation. I agree with you that I didn’t need to give up alcohol completely, I just found it easier to do so. For me personally I know that caffeine sets my heart racing and brings on palpitations. Whether that would stand up in a study…..I highly doubt it 😊

Ppiman profile image
Ppiman in reply toJezzaJezza

My daughter-in-law feels a similar effect from strong coffee, she tells us. It seems to have no effect at all on me, except taste nice! I would struggle to believe that my passion for gin and tonic can be other than supremely healthful, but I suspect I am wrong! ;-)

Steve

JezzaJezza profile image
JezzaJezza in reply toPpiman

I don’t have the data to hand but I’m sure the World Health Organisation has stated that 2-3 G&T per day is highly beneficial….. 😉

Ppiman profile image
Ppiman in reply toJezzaJezza

I knew I'd read it somewhere. That must have been it. I've also read that a large G&T taken on the same day as having a covid booster shot it will add a year to your life. I've got mine booked already.

😂

Steve

JezzaJezza profile image
JezzaJezza in reply toPpiman

😂😂😂👌👌👌

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