Suddenly back in AF. : Hi All I haven't... - AF Association

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Suddenly back in AF.

rob1878 profile image

Hi All

I haven't posted on here for a number of years...i have had AF for about 10 years and had a chryo ablation 1st which made no difference. Then had a laser ablation about 6 or 7 years ago which did work and have been fortunate to have lived a full and active life ever since.

I work for a Foodbank/Mobile Pantry .. which i founded 6 years ago with some friends ... we now sadly feed 1000 families a week .

Last Tuesday i lifted a heavy box of fruit as i always do.. but after i had loaded the vehicle i had cold sweats, i had to remove my jacket when i got in the van and as soon as i stopped at traffic lights took my pulse. My heart rate was all over the place.... i went to the walkin center as i couldnt get to see the doctor...she monitored me and said it wasn't just irregular...it was irregular irregular? She advised me to go straight to Aand E and said she would of phoned an ambulance if looked worse in my face. I attended AE at 3.30 pm and they took an ECG and blood tests.. and asked me to wait to see a doctor.. at midnight i left and wen't home as my wife is on permanent Chemotherapy for incurable cancer and i was worried about her. Also while waiting the nurse came out and advised the packed waiting room that some people in here had Covid and if your condition wasn't urgent you should leave.

At 2am once back home a Doctor phoned me to see if i was still in the building and i explained what happened..he just said if it gets worse or if i feel ill to go back to AE immediately. I have now been in this state since last Tuesday and my GP is phoning me today ... I hope she refers me back to my specialist as last time i had PAF but this time it's all over the place all the time with no respite. I have no energy and am sleeping all the time. Any help or advice would be most welcome.

Best wishes

Robby.

29 Replies

Sorry to hear this Robbie. It sounds like things are really rough for you. Are you back on anticoagulants ? If not get on that one asap.

I hope things pick up for you and your wife copes ok with her chemotherapy.

I wish you well.

Best,

Paul

rob1878 profile image
rob1878 in reply to Paulbounce

Thanks Paul.. I have never been on anticoagulants ever, so don't know if it's the Doctor who would proscribe them or the specialist.

Thanks for your kind words

Robby

Paulbounce profile image
Paulbounce in reply to rob1878

Hi Robby.

I could be wrong but given your condition I would have thought your doctor maybe able to help. Don't hold me to that though. Certain drugs can only be given by a cardio.

Worth a call to your doc to find out ?

Good luck and please report back on how you get on.

Paul

BobD profile image
BobDVolunteer in reply to rob1878

GP can prescribe anticoagulants. Bang some desks asap.

rob1878 profile image
rob1878 in reply to BobD

Hi Bob ..

Quite sure you gave me some valuable advice when i first got diagnosed..so many thanks for taking the time to reply... iv'e seen the GP and he's referred me back to the cardiologist and booked a monitor 24/48 hour one. He reckons the Cardio will be 4 weeks and the holster in 3 weeks so as the cardiologist has the information beforehand ... i forgot to ask for anticoagulants.

Best wishes

Robby

Hi Paul,

Thanks for that mate... i'll update soon as i know something.

Best wishes

Robby

Sorry to hear what you are going through. Sounds like you were under a lot of stress with your wife and your incredible voluntary work. Stress and physical activity could have been the trigger and only advice I could offer is rest as much as possible, keep calm & use breathing exercises and keep well hydrated and push for urgent referral ASAP.

Certainly ask your GP about anticoagulants because your AF has been going for quite a while now so regardless of your CHADS score, better to have some protection.

Hope you feel better soon and take very good care of yourself now because you can’t help others until you first help yourself.

rob1878 profile image
rob1878 in reply to CDreamer

Thank you very much for your kind words... i will ask the Doctor as you suggested.

i am seeing my GP at 3.45 so i'll let you know the outcome.

Best wishes

Robby.

Dodie117 profile image
Dodie117 in reply to rob1878

How fast is your AF. I think GP can prescribe bisoprolol (or similar beta blocker) if very fast. That and an anticoagulant would keep you safe until you see EP. Good luck ☘️

If it's still ongoing I would go to A and E again They are supposed to separate any covid patients

RobbieI have had all sorts of weird hearts beats for 50 years.

I have been observing myself as if I were my own patient.

I have to say that most of my weird beats can be traced to some sort of emotional pressure or pain or fear or lack of sleep.

I asked my cardiologist a question; why does Valium make my heart beat fine if I have this big old heart problem? It sounds to me like I have a psychological problem. He of course says that there are no miracle pills and that I should have an ablation. I told him to put his ablation where the sun doesn't shine

I cure my weird beats by intense exercise and lots of sleep and naps

It's too late in life for me to fix my brain. I am stuck with all of these thoughts and all of my lamenting and regretting and my childhood. Nothing I can do about it now.

Weird beats are going to happen but I fight back with my intense exercise and my sleep(and my Valium and my alcohol)

saulger profile image
saulger in reply to heartbreak

Like yourself, I have been having "weird beats" for fifty years and, like yourself, I can think myself into an AFib episode. As you know from this forum, alcohol, coffee, stimulants, etc. can be a trigger for AFib.

Read this article (very technical but the conclusions are understandable) by Hans Larsen who founded the affibers.org forum and is a sufferer himself.

He reckons that it could be caused by a gradual buildup of hormones, and its removal by the body during an episode, hence the periodic interval between episodes.

I hope things get better for you (and me).

afibbers.org/resources/aldo...

Hi. Interesting. I put in HOW CALCIUM CHANNEL BLOCKERS to bring down pulse and I got the connection between AF and solving it. My AF discovered with Front Lobe Stroke Ischaemic CVA but type Embolic while I was harbouring undiscovered Thyroid Papilliary Cancer. 4 mths later all out so it was in right lobe mostly, a little in left and 2 of the 12 lymph nodes. Feb 21 anniversary NO CANCER - CLEAR. But it has left me with complex AF. Trying to control it with BISOPROLOL but exertion = no energy. I stop sweating and unable to move - walking - jelly legs. Just started Diltiazem 180mg and 2.5 reduced BISOPROLOL. Too much! But energy better. Today trying after SYNTHROID 125mg for hormone replacement, 1 hr later Diltiazem 120mg, 1 hr later Pradaza. Night Bisoprolol 2.5 and PRADAZA. We will see what that brings. By the way I refused Radio Active Iodine! Remember leave 1 hr after thyroxine. No food or drink. Or dissolve under tongue so sips water fine. and piece banana 1/2 hr later. I dont feel AF as I have it immediately on exertion. I read up on everything and the 'bad' ribcage gives heart more space on left. TAKE CARE. THKS FOR THE ARTICLE. I am 72 yrs.

Mr Larsen mentions that in the very brief segment of the typical heart beat (half the length of the "T" wave), the heart is vulnerable to errant electrical signals that cause AFib. Too much calcium and sodium will bind to the heart cells and conduct the errant impulses, hence the use of sodium and calcium channel blockers.

I completely understand how you feel physically; I too was drained of energy + power on just 1.25mg Bisoprolol.

Did you have your blood vitamin D3 level (25-OH) checked?

Low D3 could be playing a part. If taking D3 supplement also take vitamin K2 (MK7) formula to stop the calcium from affecting the heart.

All the best! (I am 75)...

Feeding 1000 families a week thats brilliant! But you need to leave that to the others, I would stop completely and only build it back slowly and not to the same level once you are stabilised. I am guessing you don't want to hear that but you have to be fit to help.

Even though you have had a successful ablation, more lifestyle changes are likely to be necessary. But first pay privately (if possible) to see the medics asap.

I agree with RosyG and have experienced being separated in the A & E from Covid. I wouldn't hesitate in going back down and getting it sorted. I only ever go to A & E after calling 111 and that is only when my pill in the pocket hasn't worked and obviously need a drip of something stronger .You were already there so in my opinion should have been seen and dealt with you. You do an amazing job and also having the pressure of your wife the least that should happen in your mind should at least be put at rest. Good luck and keep up the great work but you must be the priority here and hope your doctor is as good as mine.

You have had some very helpful advice on here. They are quite right. You need anticoagulants - I can recommend Apixaban which has few side effects for me than some of the others. You are under a great deal of stress which is unhelpful. For what it is worth I find that once you have talked the situation through with a friend and accepted it you have to say to yourself, ‘I am where I am and i have to move forward in the best way possible’. You have to stop worrying about the feeding of the 5,000 and support your wife. Give yourself a huge pat on the back for what you have done for others. Try breathing in through the nose for5 and out through the mouth for 5 making sure you use your abdomen. What is your bp like?Very well done. Brilliant. Good luck.

TracyAdmin profile image
TracyAdminPartner

So sorry to read your post Rob1878, I am sure all the Members will offer you valuable advice and support, but if you would like to speak to one of our Patient Services Team, then please do not hesitate to contact me. Tracy info@afa.org.uk

Presumably GP has measured blood pressure and will assess CHADS stroke risk and risks of anti-coagulant (and the factors he’ll know about). I bought myself a KardiaMobil 6L device so I can ecg myself anytime I want - it’s reassures me, calms me when it says Normal Sinus Rhythm and confirms my suspicions when it says Atrial Fibrillation (so I then rest & call Dr / NHS / go to A&E if I feel rough - the best health monitor is the brain). But a Kardia is not everyone’s choice as it can unnerve you, make you anxious and thereby make the problem worse. It’s also £150.

Firstly keep up pressure to find the reasons for this event. Don’t stop till you do.But sadly I feel you’re not going to be easily able to drop everything for a bit of tlc for yourself. Your wife and food bank are your yin and yang and you feel you have a balance, but as other reply’s have alluded to you have a level of stress that might exacerbate any slight health issue.

I hope you can slow down because the old adage about looking after yourself so you can look after others is the dilemma you face immediately.

Give yourself a moment to look at what your priorities are right now, keep on at the medics to find out quickly what’s wrong and shoehorn yourself into the new you.

Just because you have to give up something doesn’t mean you’ve failed.

Chin up, get those answer’s and good luck.

First, God bless your soul. You are an exceptional person, a compassionate man who deserves better. I try and be open minded and tolerant of those clogging up the medical system because of "evidence" they found down the rabbit hole on social media. I try, so hard. Then I read your words, and...there are no words really.Please stay safe, and give your wife a hug for me.

Hi ya Robby. I take my hat off to you for looking after so many people who need your help. and I’m really sorry for what you’re both going through. You sound a really nice,caring, hardworking person and I bet doing what you’re doing is very hard.? Both physically and mentally. You’ve got your families who rely on you and you’ve got your good lady wife who relies on you too and I bet you never let anyone down either. I’m hoping that you get back into normal rhythm Very soon and are able to put your feet up and have some TV time with your wife and have a well deserved rest. All the very best to you both mate. Ron.x

I have had responses like yours when I have "crashed" from not eating (low blood sugar) or I was dehydrated. I now drink between 48-64 ounces of clear water daily ( really did not know what being dehydrated was).

In four days things self-corrected, no further treatment was necessary. Maybe you might make a similar assessment of your water intake and consistency of eating when working hard, lifting things. The combination of factors is usually the trigger for me. Anyway, what is to lose?

I am so sorry about your wife. I can't imagine!

rob1878 profile image
rob1878 in reply to macdongr

Thanks mate.. i will certainly up my water intake...i will try anything and thanks for your kind words.

Hi

Ron and everyone else for your kind replies...

I just thought i would clarify a few things .... my wife has and still is tolerating the effects of chemotherapy really well which just confirms what i always knew about how strong women are.

In 2015 myself and two friends (football fans) started to collect food for our local foodbank outside of Goodison Park the home of Everton FC.. we started with a wheely bin and collected more chip papers than food for a while...eventually this grew until we needed a vehicle to carry the food away.

We call our initiative Fans Supporting Foodbanks... with a strapline of "Hunger Doesnt wear Club Colours" as two of us support EFC and one of us Supports LFC.. we collect outside both EFC and LFC's homegames.. and now 6 years later we collect a Tonne of food per game.All food we collect goes to St Andrews Community Network which is part of the Trussel Trust foodbank network.

Last October we started a Mobile Pantry service one day a week...this has now spread to 5 pantries a week right across merseyside and at this moment we feed 1000 people per week..

Since last October 2020 to date we have fed over 40,000 people in our community. The match day collections have been taken up by other like minded people/supporters .. and i am very proud to say there is Fans Supporting Foodbanks Branches in Manchester Burnley London Newcastle Leeds Birmingham to name a few, each doing what we do on a weekly basis.

During lockdown with Football cancelled we raised £600,000 for St Andrews Foodbank to help alleviate food povery in our community.

I now coordinate the Mobile Pantry service which is run in the style of a Mobile Market..where people pay £3.50 and go home with £20/25 worth of good nutritious food per visit. They get a shopping basket like you do in any shop and pick there own items and are guaranteed fresh meat daily and fresh fruit and veg. i have tried to enclose a couple of pictures of the Pantry for you to view. We choose an outdoor market style to help de stigmatise foodbank use in our communities.

I attend and run all the pantry's and am proud to say helped by my wife.. some days she's tired and may miss some here and there .. it's her decision but she loves the banter and chat with the service users. We have music playing and a great upbeat atmosphere and people love it... hope you all find this interesting and helps pass a few minutes without thinking of our health conditions... if you are bored just Google Fans Supporting Foodbanks and enough info about what we do should be easy enough to find.

Love and best wishes to everyone, and thanks for all the replies.

Robby

Mobile Pantry

Why do bad things happen to good people? I will think of you during my evening prayers. Best, Jan

rob1878 profile image
rob1878 in reply to Janith

Thank you for the kind words.

Robby

Oh my goodness. You have a lot of weight on your shoulders. Sometimes we're stressed and don't even know it. You're working really hard plus I know you're being strong for your wife. With all that sometimes one forgets to take care of his or her self. You are doing wonderful work. Your wife also. I admire her strength and have a feeling she will eventually be fine. Maybe you can try some things people have advised for you and hopefully some will help. Hoping you can find time to rest and find good help from the Drs. I'd also ask to have your nutrients tested to see if you might be lacking anything. Sometimes even though we think we're eating well, we can still be lacking in something. Lots of us take supplements to make us better. Push for the test if you have to. We are what we eat and if we're lacking in some nutrients, it can cause problems. Scary you were around covid though. Take care of yourself and be safe. Your wife also. 🙏🙏

Thank you for your kind words and advice .

Best wishes

Robby.

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