Hi everyone recently diagnosed with PAF (March 2018) started to feel under the weather about 8 months ago drained tired heart flutters and hot sweats picked up every illness (work in school). To be honest thought it was the menopause went to doctor as finally affecting my work. Had raft of tests and no not menopause (well not yet anyway) finally saw cardiologist two weeks ago and been removed from beta-blockers GP had put me on in January due to high blood pressure and replaced with Flecainide and Apixaban still scheduled for Echo cardiogram next week.
To be honest the flecainide seems to work for the main flutters but still have slight flutters and still feel light headed at times. I have currently been signed off work for 4 weeks (although doing lots of work at home, I know I shouldn't but do not have anyone to delegate work to) - I have to admit my role is pressurized as a school business manager. Have any of you made adjustments to your working life or changed your career due to PAF?
I have been told lifestyle changes can make a lot of difference - I have joined slimming world and gym will do anything to try and improve but not sure if stressful job and long hours needs to be reevaluated as part of process.
Sorry to for long post but still getting my head round PAF and what it means.
Any comments appreciated
Sue
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Newbie65
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Hi Sue and welcome the the club you didn't want to,join.. AF is a long journey but you have some great travelling companions on here.
First advice is to go to AF Association and read till you drop as knowledge is power.
Next as you surmise is loose some weight. Recent research has shown that being overweight greatly increases AF burden as well as reducing the effectiveness of many treatments A BMI of less than 25 is considered a good goal to aim for.
Make sure that you stay well hydrated and avoid anything which may cause dehydration. Tea and coffee are fine for pleasure (keep the caffeine content down if possible.) but drink plenty of plain water to combat the effect of those drinks. On a good day at least 2 litres.
Alcohol is often a trigger so many people avoid it.
Rest is equally important and if you have any suspicion you may have sleep apnoea then get a sleep test done as this can be a major cause.
Ask us any questions and we shall try to help. I can't talk about work as I took early retirement from Banking at 52 to further my passion for motor sport engineering and now 21 years later I am still doing that albeit under my terms and time scales.
It is a shock when you are told you have PAF and you had always considered yourself to be healthier than average. You have started to get your head round it as you have joined slimming club and gym.
I have had PAF for 10 years.
My advice is to find out as much as you can about it and about your heart health in particular. Do what you can do to improve your health with weight loss, healthy diet and exercise. Listen to your doctors and comply with their advice and medication. Then relax knowing you can do no more and just learn to live with it
Yes been on anticoagulants since first diagnosed. Warfarin until recently and now on Apixaban. My CHAD score was 3 as female over 65 and hypertension. I am therefore at quite high risk of having a stroke so I am on them for life. Most newly diagnosed people these days would be put on Apixaban or similar.
Warfarin is the only one where you have to be aware of certain foods but if your diet has remained the same and INR is stable you don’t need to worry
I saw my cardiologist/ EP recently and he is happy for me to stay on Amiodarone even tho I have been on it 10years. I have had no significant side- effects and it is controlling my AF nicely
Be guided by the doctors about medication as it is complicated and no two cases are the same
Hello Sue and welcome. Diagnosis of PAF is a bit of a jolt and it does take a bit of time to work out the best way forward. Your plan to lose weight is a big step forward, helping your BP too. Healthy eating is also very important, and surprisingly individual to each of us. Generally alcohol, artificial sweeteners, colourings, flavourings, artificial preservatives, junk food and processed foods are on most people’s lists of things to avoid.
Stress is a major factor in heart arrhythmias - either from worrying about what is going on or from external pressures. Your phrase ‘do not have anyone to delegate to’ rings a warning bell for me. I felt the same way about my beloved job - but, when I took early retirement, I was missed for about 30 seconds. 😃. You have been given four weeks of rest - I would advise you to take it and concentrate on you and your own needs. (Sorry to sound preachy but I’ve been in a similar circumstance and did exactly what you are doing, when I should have been recovering from bronchitis.)
Fortunately for me, AF didn’t strike until I retired but I could never have coped with uncontrolled AF and a fairly demanding career. I also take Flecainide, which works for my AF but I too get ectopic beats and little runs of gymnastics - especially when I have gut trouble, or as just recently, a suspected viral infection. The main thing is that Flecainide seems to have improved your quality of life and hopefully, things will improve in other ways once all the tests are completed and you have a treatment plan.
Any questions - fire away, all of us have been where you are today.
Thank you for your reply - I know you are right about work as someone said what would happen if you dropped down dead. Someone else would fill my seat! If I am honest with myself the work pressure is probably made worse by me. I think I know the answer and will ask to reduce my hours or workload and take time off if I need too (just have to not have that oh no I am one of those people who is always off sick moments!! ).
I have been ill quite a few times over the past year with colds and stomach bugs (caught at work probably ) normally would not have picked everything up does having AF make you more likely to be come unwell? I was feeling very tired all the time.
Modern thinking is that AF keeps company with other medical problems - as Hennerton suggests, thyroid trouble is one. Sleep apnoea is another factor involved in causing AF (and it makes one very tired).
A York cardiologist, Dr Sanjay Gupta makes video blogs on practically every aspect of AF. There are many of the videos posted on this forum by one of our members. Try the top right search box for Gupta. He also has a FB page and is helpful and very informative.
It’s a good idea to jot down your health issues and thoughts so that your cardiologist gets a complete picture from you. xx
Did the ' raft of tests' check your thyroid? Many of your symptoms sound like thyroid issues. If you ask for a copy of your tests, to which you are entitled, you will be able to post any relating to thyroid on the Thyroid UK site of HU and ask for an opinion. Sad to say thyroid problems are often overlooked or misread, as doctors know very little and often get confused. Your tiredness, heart flutters, high blood pressure and hot sweats are all underactive thyroid symptoms. Just a thought...
Yes twice and then again when I was sent to A&E - all normal friends thought it could be thyroid but was the only test that came back normal each time! high cholesterol, high BP and Vit D deficient (but this is common one). I am still bit shocked it is PAF but I was ignoring symptoms thinking it was age related (53 in Jan). Thank you for thought, you never know GP was not sure in the beginning and then cardiologist was not happy the GP had put me on beta-blockers for BP and has since taken me off them. Now worried that my BP is not being treated. The cardiologist and GP dont really seem to link together. That is why I am so pleased to have found this site.
All I can say is that if you look at the Thyroid UK site you will find endless cases of people being checked for thyroid and being told they are fine. It is a complicated disease, with doctors looking at only one marker - TSH. (Thyroid Seeking Hormone). It took six months for me to get diagnosed because the blood test said I was fine and nobody bothered to re- check. Other tests will show a true picture but are rarely done. I hate to push the point but if I were you I would rather have a thyroid problem than a lifetime of possible AF. Thyroid is more easily treated. Do ask for your blood test for thyroid with the reference range and post on the site, just for reassurance. (They are a lovely bunch of people, just like this site.)
Just read this again and looked at site - I will mention this to my GP as would hate to be on medication that is not actually treating the route problem. Thanks for this will be mentioning as other people all said when I first went for tests could be thyroid.
The members will straight away ask you for blood test results with references ranges. I hope ( but it is unlikely) that your GP asked for TSH, Free T4 and Free T3. These will give a good first picture. Strangely, T3 is the one he will never want to do but it is the one that actually shows how much active hormone is being created by your thyroid and is really the one most indicative of what is going on.
Sadly, thyroid issues are probably the most undiagnosed and misdiagnosed in the world. It seems like a huge conspiracy to keep us all ill. I know that may sound overly dramatic but it is a fair representation of the position as it is today. The more you read of members posting on the site, the more you will realize it is true. My luck, if you can call it luck, is that I had to have mine out and so there is never any doubt that I need to take medication!
Hello Ginshu,. I am trying to remember how I got to the AF site after being a long standing member of the HU Thyroid Uk. All I know is I used my same Hennerton username and somehow just slipped across. I will fiddle around and see if I can do it and get back to you Newbie65 mentioned that she had looked at it so you could try asking her. Sorry, feel very brain fogged today!
My thyroid issue was also hyperthyroidism and after having Carbimazole for several months and not settling on it, I eventually had mine out. Big mistake. If you still have yours, hang on to it and do not be persuaded by doctors.
Hello again, you just need to put Thyroid UK in the search bar at top right and you will go straight there. You then post questions as usual. Hope it helps.
Hi and welcome. Like you I have paroxysmal Afib and I also suffer from an under active thyroid. As Hennerton says they often go hand in hand. It will take time but you will get there. I have found that by pacing myself I can live a full and happy life. Di
Hi Sue, and welcome. I was diagnosed with PAF a year ago but had been experiencing similar symptoms to you for 18 months before this. My stressful job is a major trigger for me but it took a while to realise it. I worked long hours and drank far too much caffeine! I lost 3 stone and feel much better for it, and I don't bring my work home anymore. It isn't easy when people have come to rely on you, but you now have to put yourself first. Good luck!
Thanks Pam i think you are right i need to put my health before my job will be a challenge but at the end of day only a job. Fantastic on weight loss i was shocked to find out how much i actually weighed determined to loss excess. Can i ask did you ask for work load/hours to be reviewed? Would make a big difference if i worked to my contract. SUE
Hi Sue. My workload got ridiculous due to lack of staff and the fact that my boss is permanently 'ill! It's been very hard but I am getting better at saying no. I now have support from my boss's manager, who is very hot on people having a work-life balance. Yes, things get missed but at the end of the day, no-one has died!!
I am also negotiating dropping to 4 days a week so I can get some extra exercise in!
Hi, we're the same age and I suspected hormone problems initially. We all have different causes, but in 12 months I've managed to improve my situation - from having terrible AF episodes twice a week, to now only once every three weeks.
What's worked for me is losing several stone (BP is now better too), cutting out sugar/refined carbs/processed food, sleeping semi upright with a V shaped pillow and getting the right medication. I also meditate daily to help me stay positive and see the bigger picture. As I continue to lose weight, I hope to reduce the episodes to even less frequent :o)
Slimming World is ok, but from experience I know they don't always focus on healthy eating, with regard to processed foods. For example, low fat yoghurts are full of nasty sweeteners and other stuff.
It can be a challenge to find out your triggers, if you have them. An obvious one for me is eating a big meal, but I also find toxic fumes from scented candles can set me off.
There is also plenty of info available on whether your AF is mediated by the vagal or adrenergic processes. This can make a big difference on which medication will suit you.
I have just been reading through the emails and saw your piece where you mentioned that AF can be mediated by the Vagal or adrenergic processes. Could you possibly let me know where I can find such information please. I know Sanjay Gupta does some interesting videos but how can you tell which sets off our own particular AF? I have always thought mine is vagally induced but I do get very nervous about things and wonder if my adrenals are working over time too. I have a habit of sniffing when stressed which is a bit like hyperventilating and this I know can cause my heart to go out of rhythm. I must get sleep apnea checked as I snore a lot and get AF at night too. Thanks
The truth is I'm not completely sure what sets me off! I had a lot of night time episodes when it seemed to be vagal, however I have also had occasions where I've had a sudden shock and immediately gone into AF. So the likelihood is that it doesn't have to be one or the other. I now feel like I'm that film, 'Speed' where the heroine has to keep the bus going at a set speed or the bomb goes off haha.
So I currently try to prevent being over stressed, and also sleep sitting up, and these methods seems to be helping anyway.
I smiled at your sniffing habit :o) ... I used be a habitual sniffer when I was younger (it's like having an OCD I think and it drove my family crazy) - and I noticed it gave me palpitations. Perhaps there is a Sniffers Anonymous :o) Oh God, I really want to sniff as I'm typing this now... !
Thanks for your reply. I know, sniffing causes my palpitations too! I think it’s because the diaphragm pushes up against the lungs and heart very suddenly. How did you stop sniffing cos you obviously don’t do it now. I only do it when I’m tired and that’s also a trigger for AF , (tiredness, that is) I will have a look at sanjays video, thanks.
I sniffed habitually from when I was a young child, it was just one of many OCD type things that I did. When I was about 13 I realised that the OCD behaviours were ruining my life and I decided to try to stop them. For a few years it was 'two steps forward, one step back' and the habits would come and go, but I was determined. I still have a few things that I do, like grinding my teeth, but I can live with it!
The funny thing is, if I hear someone else sniffing now, it immediately makes me want to sniff too haha!
Thank you for reply actually you are right about yogurts and i have been eating alot! I am.going to slimming world to kick start losing weight i will if i have the will power make a life change with food. My triggers are coffee conmuting on packed trains and some situations at work. Can i ask why you changed sleeping pillow? I do snore and not sure if have sleep apnea hoping weight loss will help thanks for reply sue
With regard to fats: I have lost weight while eating plenty of healthy fats. Cutting out heavy carbs does the trick. There is still controversy about what constitutes a 'healthy' fat, but I eat virgin olive oil every day, unprocessed coconut oil, nuts, seeds and a little oily fish. The body really needs healthy fats. I don't eat much dairy because I seem to be sensitive to it, I get tachycardia and sometimes AF from it. But for most people, I think an organic full fat yoghurt will be much healthier than one full of nasty additives (you can add your own fruit to it). All processed food is a complete no-no, it causes inflammation in the body.
The pillows: I was managing to reduce daytime triggers, but AF starting in the early hours was getting more frequent. I'd sometimes wake up with bad ectopics, and could sometimes stop AF developing if I sat up or walked about. But if I didn't wake up, the ectopics changed into AF, and once that started I couldn't stop it. So I tried sleeping semi-upright with three ordinary pillows, and a large V shaped one to stop me falling out of bed! I'm used to sleeping in that position now and haven't had an AF episode starting at night, since. I don't think I have sleep apnoea, just too much fat around the midriff still!I
If you're suffering from stress, maybe try meditation. There are many different guided ones on youtube, there should be one that feels ok for you. I have really benefited from listening to Eckhart Tolle, his way of looking at the world is incredibly helpful, there are loads of his videos on youtube and his books are amazing.
I bought an audiobook/cd called "Mindfulness for Beginners" Some of those biorhythm cds are good too. Midriff fat is a lot the cause of sleep apnea. I am finding that losing weight helps many, many things especially when you add a daily walk. I am on a low carb diet as well. There are many variations but when I lose the weight I need to lose, switching to Mediterranean Diet....but no wine. My ectopics started after coughing for a cold and stuck around, probably because of the stress of them and then the rectal bleed didn't help. Perhaps I have always had low iron but who knows since I only got tested for it after the bleed and it hasn't budged much after that either. Weaned myself off H2 blocker has it blocks absorption of iron and B12...and with low carb diet, do not get the heartburn. Duh! Going a little earlier for a scheduled colonoscopy just to make sure nothing is going wrong there and if there is, fix it. Scared of resuming NOAC, though. Maybe switch to apixaban? Crikey they are expensive! Is apixaban more expansive than rivarobaxaban?
I had two PAFs 10 and 12 years ago during menopause. I would have a period...then an Afib....following year, one period and another afib. After that, no afibs (and no periods). I am on a ARBs inhibitor which studies indicate, help prevent the heart from electrical remodelling from afibs. Of course, doctors denied they had anything to do with menopause, but I beg to differ. Pre-Menopause, had increase of PACs..I remember them well. I was considered "young" to have an afib and because they were proximal, I only got the one heparin shot and nothing else....oh, echocardiogram which showed a normal heart. I recently had a two month spat of PACs (determined by electrocardiogram), lost 7 pounds, taking magnesium, on my keto diet and they have disappeared....I am hoping it stays that way. I cannot stand beta blockers; they block my breathing even the ones that are supposed to not bother your breathing as much, and having heard about ACE and ARB inhibitors, chose them...so far, so good. I found beta blockers made my heart feel worse too. You might want to check out ACE/Arbs on cardiac journals or pubmed.
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