I hope this message finds you well. I wanted to take a moment to reach out to you all about something that's been on my mind lately. I've noticed that the forum hasn't been as active as it used to be, with fewer regular members posting and contributing to the discussions.
As someone who has been diagnosed with afib and has found this forum to be an invaluable source of support and information, I know firsthand just how important it is for us to keep the forum going. Many people who are new to the condition come to this forum seeking advice, encouragement, and understanding, and it's up to us to be there for them. I know I did when I was first diagnosed with afib. The support here is second to none.
That's why I'm writing this post today, to encourage all of us to start posting more again. Whether you're sharing your personal experiences about afib, asking questions, or just offering words of support and encouragement to others, your voice matters. Every post, no matter how big or small, can make a real difference in someone's life.
So if you've been lurking in the background and haven't posted in a while, I encourage you to come back and join the conversation. And if you're a regular poster, I hope you'll continue to share your thoughts and insights with us. Together, we can create a vibrant and supportive community that helps everyone affected by afib.
Thank you for taking the time to read this message, and I look forward to seeing your posts on the forum soon. So come on you lot - let's do what we do best. Helping newbies who are panicking after being diagnosed with afib. It goes a long way to help reassure others and can really help them. It's nice to give help to others and receive nothing in return. People here have helped me in the past as I'm sure they have helped you. People seemed to have dropped out due to a few silly spat's on here. Does it matter? No, it doesn't - just scroll on by.
Is it my place to post this? No probably not but I will anyway. If people don't like the post then just unfollow me and don't read my posts - simple.
This is the best afib forum online - let's keep it that way.
Best regards,
Paul
PS - Rant over.
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Paulbounce
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Well there you go Paulbounce. I personally have found this forum very helpful and read many posts but don’t really have the experience to reply much. I try and welcome people but am carer for my husband so am kept busy. I’m also a member of Asthma+lungs and have been since 2012. No excuses though and l will try harder perhaps.
To be honest I was just thinking that there has been little happening I can help with. Original posts have been few and far between recently and those that do arrive have had a fair number which are not really AF related. Maybe a matter of perception but I do visit several times and check questions are being answered.
Well said Paul. I second all that you have written. I too have noticed how the forum appears to be getting fewer posts. Please regular members let's keep it alive for those with AF that need support.
Yes Paul, guilty as charged. Not much new happening in my Afib story, but that doesn’t mean I can’t offer encouragement to newbies.
When I was diagnosed 2020, it felt the end of the world and this forum has been great help and support.
There is perhaps a little part in all of us to take some distance when things are going well, but still even a couple of lines to acknowledge someone else’s difficulties can make a huge difference as any chronic illness can be so isolating.
I took a year or so for me to calm down and get used to the new normal, and most of the time all is well, but Afib will always find some new ways to get you. The biggest stress is knowing how hard it is to get in touch with your GP, what desolate place the A&E is ( I have been a frequent flier as my husband’s support person and it’s grim), how hard it’s to get your meds with pharmacies in disarray (Lloyds have been taken over and still waiting to see if they close high street branches) and I am still to actually have a face to face with an EP.
… But through the forum I have learned to find answers myself, to keep myself up-to-date with latest advances in meds and procedures, I found Arrythmia Alliance UK website and helpline, to use when the local cardio nurse is unavailable, I knew to purchase Kardia to record my episodes to support my queries with cardiology and I also learned not to monitor myself all the time.
The most useful lesson learned is not to chase after triggers. That way madness lies. Common sense things to avoid are stimulants, excess in everything and to destress as much as you can and that’s about it really.
Not easy to someone like me with all it nothing personality, but there is nothing like the feeling of your heart trying to jump out of your chest to concentrate your mind and to stop yourself reaching for that second helping or a glass of bubbly or kilo of chocolate or to spend all day digging in the garden. Small steps, small steps and breath !
Good post Paul. I'm very guilty as charged as I felt some time ago that the forum admin was changing in a way that I didn't like or find helpful, so I took a year or so away from posting.
The lifeline which this forum provides for people like we all were at one time is invaluable and is an essential source of information and support - but only, of course if the supporters (us) want to be part of it.
Hi Finvola. Of course you are right - we all have a choice wheither or not to be part of the HU community. It is interesting to learn why you took a year out. Maybe it's worth you letting admin know the reason so they are aware of these issues and may work to resolve them.
Great Post Paul, every now and then a kick up the jacksie is what’s needed. I personally know very little about the workings of the heart, but try to share my experiences of my afib journey with others, I confess to sometimes getting a little lazy and leave remarks to others. Thanks for the post 😁
I’m still replying but not posting - but that’s because I’ve not much to post about recently that I haven’t posted about extensively and I’ve noticed that there has been much less interest in serious debate and more dismissive replies by people who blindly follow medical advice and just keep taking the tablets as prescribed.
I am interested in the increase of arrythmia after COVID vaccinations but that’s too hot a topic so I’m backing off that one!
I have been taking part in the AFFIRMO study and was amazed that so few of us signed up to that - all the questions that we have talked about over the years are being closely examined by a team of doctors from all over Europe and yet less than 12 patients signed up? Despite being widely publicised on the forum and the AFA website.
Has apathy set in? Probably, speaking for myself and now you’ve provoked me into being curious as to why?
I was thrown into afib following a mild attack of covid. This was last October and still in afib now! I know of people having it following the jab too. Do not know why it is so controversial but I suppose I will soon find out! My ep is well aware of this happening.
So sorry to hear that. I was vaxxed, I was OK until I got COVID in Oct21 and since then starting to have a lot more episodes after being clear of AF for about 4 years, a lot worse after every vax since so I am not having anymore.
I was a great supporter of the vax in the first 12 months despite warnings from an NHS consultant friend of mine. Any doctor who spoke out unfortunately was badly ostracised and labelled as an anti-vax ‘er which then became such a horrible witch hunt - there were some horrible posts and replies to geniune questioning and enquiry on this forum, which was a lot more tolerant of questioning than most of the other forums!
Even I'm changing my viewpoint re the ongoing vaccinations. 2 months of shingles on and off following the last booster so I think I'm with you. There's got to be a better way. We'd no rule book when the pandemic hit but we need a longer term strategy for dealing with immunity and autoimmunity going forward. Having developed hypothyroidism which is also due to autoimmunity I'm becoming much more aware of how many suffer malfunctioning of the immune system. It's worrying tbh
I am also a doubter when it comes to the Covid vaccine and am totally wrecked when I read how the injured and some top doctors have been treated, here and in the States. Looks like I will have to join protesters in London at some point as unfortunately my conscience is not satisfied by the occasional donation.
I completely agree with you. The dismissal of viewpoints other than vax is good Is not a good thing. I have seen too many injured and when I hear about people Vaxxing their young children and babies it breaks my heart that they just follow along like sheep. That’s only my opinion. I had one shot of J and J In the beginning and won’t be getting any others. I will never touch an mRNA vaccine. My immunity is more important than a shot and I’m dealing with tick borne Illness aside from AFib. I had a MiniMaze last summer to correct my AFib which I fully believe was brought on by the tick borne illness and irritation of the vagus nerve. Other than that I’ll take my chances with Covid which I had last year and for me it was nothing more than a cold I took Ivermectin and zinc along with hydroxychloriquine and was over it In 4 days. My antibody numbers are through the roof so I’m good
Yes, BEWARE ALL next month here in the UK TICK SEASON starts and that may have also been the reason that tipped me over into AF way back. Well done on avoiding the mRNA 'vaccine' . You are lucky in the States you can get hold of Ivermectin; here in the UK it is very difficult due to our unhelpful regulatory authorities, who seem to think they know better than doctors and their patients. Stay well!
I think this vax thing is very complex. I have symptomless familial PAF. I had three Pfizer Covid vacs (well spaced) with no bad effects at all. But some months after my second Covid I had my pneumococcal booster ( the protocol here in South Africa is every two years) and I had short bouts of AF for about 2 weeks after it. I only know by checking my pulse regularly and with my BP monitor flashing an irregular heartbeat, that I know I'm in AF. After that it settled back into NSR - I cannot help but thinking the vaccine was causative, but I may be well off the mark !
And because the data has not been collated we may never know for us there is a link. The WHO have now recognised and codified some of the after affects but AF is not listens but at least there is some recognition that post COVID vax syndrome exists.
I have the first two vaccines. I never had a problem I have refused. I will continue to refuse booster shots or so they are calling them a booster shot. Used to be good for quite a good length of time now you’re lucky if it’s a few months, then they rushing to get another. Thanks no thanks, I know the strains are weaker now so I don’t know when I did have Covid last March if it was not that bad due to my initial two shots or just because of the strain that was out. Smoke and mirrors constantly and lots of lies. I’ll take my chances without the poison in my system. Bad enough we have we have with a fib.
I’m glad you raised this. my first vaccination led to an AF episode in the night and a blackout which ended up with me falling downstairs and knocking myself out. but at the time this didn’t feel like a safe space to speak up about it. I just declined further vaccines.
Ah, this explains a lot to me as a post-pandemic member. How awful for those who couldn't speak out about their personal experiences and to be put in the same camp as the mindless anti vaxxers who believe every conspiracy theory going! I associate the onset of my Afib with the booster last September. I was very fit and well previously. My EP said inevitably with such a global vaccination programme saving millions of lives there was shrapnel. Having the discussion out in the open now could help people make informed choices.
I might be imagining it and only having been a member for 4/5 years not that experienced with patterns of posting but it seems to me that there are more newly diagnosed people joining the forum and that when they give a time for starting with afib it coincides with when they might well have had a booster jab (if they do not mention an epidode of covid). Some people actually state that it started after a booster.
I got the impression/ assumed that AFFIRMO was UK based. Can people living in other European countries join?
I have noticed quite a few people people who I thought of as "old timers " when I first joined not posting anymore. I also pm'ed Belinda yesterday as she has not posted for seveal months to see if she was ok.
As far as I am aware it was a European project - certainly funded by Europe and lots of European medics but it was conducted by Liverpool Uni. You might want to feed back to Admin about that as I think they were quite disappointed with the numbers of patients participating.
Oh how sad! I have to say I had to push and contacted Admin as I originally did not receive a reply and they gave me the direct email to enrol. Such an interesting process and I will be sure to post more after the official study has been published.
Definitely Paul. I'm diagnosed a year and had to fight to see an EP. In our local hospital AFib is treated by the medical team, I wasn't even entitled to see cardiology until I progressed to heart failure. That's how bad it is. I knew once diagnosed that that's the way it would go because that's the way my friends mam went, heart failure after six years of Bisoprodol only, never any other meds. Now she's on huge doses of water tablets to stay breathing. Absolutely neglect and ridiculous
Hi Mary. The saying 'he who shouts loudest' springs to mind. I'm always polite and calm and never lose my temper. However, I'm not scared to make a bl@@dy nuisance of myself when needs must. They hate it when you do and think 'Oh no here he comes again'. It has the desired effect though. When my Mother had cancer the Doctor refused to see me as he was 'busy'. I waited in the car park until he finished his shift and he went to get in his car - he saw me then
Love it. My friends daughter was with her dad in the hospital, the poor man has a very rare neurological disease, and the doctor refused to talk to her. He also told his team not to talk to her. Her dad can't talk for himself. She lost her **** with that doctor. He talked to her in future cos she went above his head
Hi CD. I removed it myself. I had second thoughts as it somehow distracts from the forum. I might email Tracy and ask her opinion - if she agrees and thinks it's a good idea I can soon repost it. I think it's best to check with her first though before I do. I assume you read it although I took it down right away. If you did what are your thoughts? Good idea or not?
Hi CDreamer, this is only the second mention I’ve ever seen of the AFFIRMO study, even though you say it was publicised widely on the forum. I usually have less than five minutes a day to browse through the posts on here, so it’s easy to miss stuff, I suppose. Sometimes I make myself a note to look something up later… and then there isn’t time later. It does sound really interesting but I’m not at all clear who is ‘eligible’ to take part
I absolutely agree with you, Paul. The information available on this site is invaluable. And what is really special, is the support and help and compassion we find here. Bob D is an absolute star. I have benefited from your contributions too, Paul! So feel free to rant, rant and rant when necessary.
So prompted by you Paul, I’d like to offer anyone who is facing “pace and ablate” some reassurance. I didn’t relish the idea at all but accepted the medical advice to agree to the procedure. It’s been a wonderful step forward for me. I am less breathless and able to walk faster and further than previously. I’m no longer troubled by the Afib and that in itself is worth celebrating. The procedure was painless and caused me no anxiety whatsoever. The team at Leeds was superb.
Totally agree with you Paul I don't know where I would have been without this forum in the past it was invaluable with people like Jean and Bob and CD and too many to name but I go on regularly to see what's going on and to me its got a bit frivolous a lot more than it used to be it might well be putting off new people who dont think we take things seriously
It would be a shame if that were the case FG. Trolls on here are few and far between but there was one recently who kept registering with new accounts when he was booted off. He did 3 new accounts that I know of in a few weeks. Mind you he's easy to spot if he tries again.
I fully agree and I’m guilty of not posting/replying as much as I could. I also agree with Bob and some posts have not been Afib related. It does slightly bother me when posts get hijacked. I then think people don’t always carry on reading replies so I tend not to respond. I read posts on Daily Digest. Maybe I need to change that so I can reply sooner and not 16hrs + later?
cheers Paul for that reminder, when I hopped on board to this forum there was nothing but positive suggestions, it gave me confidence to 'carry on' I'm going ok at the moment so will offer what I can to the members and share what's working for me
I check daily and I too notice less original posts seeking help. I'm very keen to stay involved as I owe so much to the forum. My AF started just before the pandemic and it was a lonely place to be. This forum was a life saver and probably contributed to the sanity of my husband during an extremely anxious time. I think life in the UK is quite difficult at present - financially and politically uncertain to say nothing of our NHS. I wonder how much of the lower activity is due to that, and not lack of interest. I'm still working- need to earn money - and I'm tired. Many days it's about one foot in front of the other. Perhaps others are in the same boat?
Good point - it feels as though dysfunction has overwhelmed us all making us feel helpless - speaking as from a collective place because that is what I sense from people I meet. And that’s not like me.
Yes. And couple that with the post pandemic trauma. Many still feeling the impact mental health wise. Our own lives here in midwales became more isolated - husband and i are natural introverts but if you get too closed-in its bad for you. Humans are social beings. Makes me wonder if some people are also 'Onlined off' - desperately seeking personal contact. Perhaps that's also a reason for fewer posts. There are many people here I'd like to meet and sit down with for a laugh and a chat.
Well said, Singwell. There are a lot of women like me in our 60s, now still having to keep working till 66, desperately trying to hold on in an ever-faster-paced work environment, despite whatever health challenges older age throws at us. Time is a luxury reserved for weekends - with all the household chores to fit in too!
The forum is indeed a life saver for many Sing. I hope all is good with you and things pick up soon and you feel less tried. Afib can cause this feeling for sure.
After doing much research without tablets, studying my Vagal Afib over a 6 month period and posting here on a regular basis I was convinced to medicate a few months ago and have not had a single AF, PAC or PVC episode since. Hence my absence...
Will be seeing my EP in another weeks time with the idea of me asking to go off the meds for a few weeks to record my heart to see if AF comes back the same as I left off.
I am now curious if AF progresses when medicated or if it stays the same or gets worse...
So variable. Meds seemed to work for me for a short time - but I actually felt worse on them. Ablation helped but AF broke through, Pacemaker helped but AF is now breaking through after COVID and after doing everything I possibly could to help myself, I am in a place where I can and do accept the occasional AF episode and get on with my life.
I don’t think it’s treatment OR Lifestyle but doing both. Unfortunately many people seem to think that Lifestyle simply means food and exercise and it’s SO much more.
You are right Paul. I read the posts every day, since 2021 when my AF started. It has been a horrible time, but being part of this has been an absolute godsend. I have learnt so much, but still find the working of the heart so complex. When I read the posts, I know I'm not on my own, which means a lot. A big thank you to you all for being so supportive informative, warm & friendly xx
Hi there, I was new to the AF forum in Oct when I was diagnosed with rapidly conducted AF. I was in a right state & petrified ! The majority of replies on here were really helpful & supportive.
As I gradually moved forward & followed the forum I must admit I found some comments a bit too dismissive…” that’s how it is get on with it “ sort of comments & a few “ thought I was ok then admitted with in cardiac arrest” type comments.
Plus a few along the lines of “ not that drug it nearly killed me” type of reactions. So being in an anxious state I had to stop reading the comments for a while , blindly take the tablets, listen to the cardiologist and get on.
Then the forum went down a few sillyish to me rabbit holes , so steered clear. I still get odd thumps & bumps in my chest but sure that’s ectopics … I’m still standing & fully back at work plus I’m laughing again😊
That said , I’m well controlled at present, it’s my birthday today so I’m finally feeling brave enough to leave the comfort of Devon for a fun weekend in London! Yay.
Thank you to everyone for your continued support, might feel brave enough to get on a plane to Croatia in May ! Let’s see how the weekend goes.
Sorry for the long reply , just my thoughts & feelings 🙂
I had an ablation in Dec 22. I was still getting ectopic PACs. Cutting down food with added sugar helps. But adding coenzyme q10 has been phenomenal. Seemingly after doing some reading on google scholar q10 helps reduce inflammation in the body and inflammation and AFib are linked. Considering my thigh was the size of a house after an anterior hip replacement, where they literally pull the muscles apart but don't cut, full of inflammation and on pops AFib. The joys, get one thing fixed it get another
Nice one Mary. I haven't heard of Google Scholar before - unlike me as I'm quite techy at times. Just had a quick butchers and it's well good. Much better than Doctor Google who is full of gloom and doom.
Hi Paul, Debbe one of the admins or Nedra on the American fb AFib page, often reference google scholar. I didn't know it existed either tbh. But definitely plenty research there. On anything. The q10 study is definitely interesting. I don't understand why the EPs don't recommend magnesium taurate and q10 to their patients.
Happy Birthday Snigg. Have a good one. I don't have Birthdays anymore - I stopped when I hit 29 lolz.
You'll be fine flying - just got back from Serbia and no problems flying at all. Take extra meds with you in case of flight delays etc. An extra weeks supply fully covers any such delays.
Excellent observation and post, Paul. The generous and intelligent people on this forum have taught me so much more than any of the health professionals that I've met over the past five years. I am fortunate to have settled into permanent but mostly asymptomatic AF but my first action every morning is to scan the daily posts to see if there's anything relevant to me and if there's anything that I can add. Mostly, there isn't, but I continue to appreciate the effort that the really expert members of this community (you know who you are) put in to help people who are experiencing AF for the first time. I've learned to trust my own body with regard to exercise, medication tapering and elimination, losing weight, eating more healthily, and reducing worry and stress. Honestly, none of these simple helping mechanisms were proposed by the doctors...Thanks all, and well done Paul.
Thank you Paul for your rant, it's important to keep the forum active. Some days I am eager to see what other members are saying, other times I flip through the comments because I don't want to read more about AF, I just want to forget it! Especially when you wake in the middle of the night heart pounding thinking oh no here we go again and then realise it was just a moment of panic! It's good to know others are there, feeling the same.
Hi Val. When you wake up in the night and your heart is pounding pratice 'deep breathing' and 'grounding' technics. Have a Google and find the one that works best for you.
Paul, well said. I have daily alerts for this site. I do post but not often as I've no experience of many of the medicines and procedures but do try to give support where I can as many members have supported me when I first started my journey.
Speaking as a relative newbie to Afib I have found this forum to be an absolute lifeline. The support offered here continues to be a daily part of my life and without it I wouldn't have pressed for the treatment regime I'm now on. I read the latest posts every day and answer when I feel able, but I often don't have the experience or knowledge to reply so in that case leave it to others. A general reassurance though is so easy to give and a much needed reason for responding. Thanks Paul for your post, very heartening.
I used to be a regular here with a different user name. Unfortunately there were people that were not friendly and just wanted to discredit my replies or cause friction.It got to the point where I just had to get away from it for a while.
I had found the forum to be of great help and support on my af journey and despite a successful ablation (6 years last week) I still signed in and gave my thoughts.
I still check in from time to time with my new name, but I don't want to go through the stress of last time so my contributions are few and far between.
Hi Blue. That's a shame you felt stressed on the forum - it's the last thing you need with afib. Most members here are very friendly but you always get the odd one. During my time here I have only laid into one member - he deserved it and from what I remember I gave him both barrels. He was using bad language and got booted off from what I recall.
I keep an eye every day and if I can help in any small way it's a pleasure. I had Afib for 12 years and diverse medication. After an RF ablation that seems to be working for the time being ,I keep an eye out for posts relating to these subjects and help if I can. But there are many subjects above my pay grade and I prefer to read and learn instead! Also there are quite a few posts where we just support each other with good humour , jokes and rants but my jokes are terrible ( when I can remember them lol) so I keep a low profile if it is not Afib related.
I hadn't noticed much in the way of a lack of posts as I reply each day to one or more - or maybe not every day, but it seems that way.
I've missed the controversial stuff some allude to in this thread and find admin here exemplary. The occasional anti-vaxx and covid mentions always get to creep in - even in this thread, I see! - and might well be off-putting for some, as, well, there's no way to reply to such fixed views.
I wonder, myself, whether social media itself isn't taking something of a hit these days with people becoming a bit fed up with it? I'm likely wrong on that one and reflecting just how I feel about Facebook, especially. I know this forum isn't quite "social media", at least in the same way, but it might just be suffering from a general turning away from online chat?
Overall though, I don't feel this forum is going through a bad time and I enjoy my daily look into it and am grateful to people like you and the several regulars for the help and support it offers.
Hi Steve. Facebook is a nightmare - I haven't posted on the platform for years. To many keyboard warriors on there for my liking exchanging insults with each other all day. Personally I've better things to do with my time!
I have been with Afib forum for a few years..I am now in permanent Afib so I don’t ask too many questions these days..I shouldn’t say this but I feel like I know enough!..I do read the posts but most don’t need my input..
As time has passed I have other more pressing problems. With my health..ie:Aortic stenosis and leaking Mitral valve so I have joined British heart foundation group where that answers more of my Questions..I also see that Jeanie goes on the site…Just thinking maybe that’s why the input may dwindle from some ,as it has me. I am under another name now due to being hacked..I was Bertiedette but couldn’t use that name when I had to rejoin…
Still have the old irregularly irregular though…lol.
Sure Antoinette. The BHF is quite lively but I tend to stick here as I don't have any other heart problems apart from AF. I might dip my toes in the water as I am a member also.
Maybe people are busier now, or getting outside now the weather is better? Sometimes there are posts on things I haven't experienced so can't add any comments. I certainly hope this forum continues as it's invaluable for advice and support - s thanks all.
Hi Paul, during Covid I started to isolate myself more and more from here as some of the comments were a little dismissive of others views. We all have our own journeys and decisions to make and I have had wonderful support from here and read the posts but only comment if I think my experience can help. I am grateful to everyone here for their posts , sharing their experiences is what got me through the early days of diagnosis when I felt scared and alone as the hospital gave me no information on what was happening. I was given Warfarin, told to attend a clinic in 3 days with no diagnosis. Despite numerous questions I got no answers, luckily that changed when I demanded a second opinion and went to another hospital. I then found this forum and went from scared and life is over to moving forward with some positive steps.
Thank you Paul for your encouragement to reach out and try to help others. I too have found this forum most helpful. Not just receiving answers to my own questions, but reading answers to other people’s questions. Even though I have been on here a number of years now I don’t really have the knowledge to reply much, if at all. I admit to living in my own bubble, and not thinking, I could at least welcome people, be encouraging, tell them they have found the right place, as the experience & knowledge of a good many people on here quite frankly astounds me. So, having said that, I would also now like to take this opportunity to thank all you lovely thoughtful people who have responded to me in the past. Please keep up the good work.
Oh well said Paul. I left this site for quite a while, I joined a private Facebook group where folk had to use their own names so were more careful in their responses. It is less informative in some ways but good for me to add to as my experience is a few years.
The moderators on that group delete anything about Covid, apart from a factual statement like “two days after infection / vaccination”, the rationale is that the positions are too set, it is not a group in a position to evaluate the science (there are other sites for that). Relief.
I find some regular contributors here so informed, but also find some who can be very helpful in many ways may not realise how their tone can be unhelpful - example criticising folk for being “dismissive” and “blindly follow medical advice” is a tad dismissive. I have had excellent medical advice and over the years some very dodgy “naturopath” help. Some of the most dismissive comments over the years have been from those trying to be helpful but banging a loud drum!
I should just scroll on by as some remarks are predictable, one gets to know the views of some regular contributors, so skip it, and I do, but Paul asked a question so I am making a response.
It is a valuable site and some Afibbers suffer a lot and the crumbling NHS is heartbreaking for those of us who need to call on it. I have been very lucky as had a great EP, but initially GP needed bringing up to date over AF 🙄 but who otherwise is brilliant.
I recently had a GA and no effect on my post ablation quiet AF, two ops under sedation - same - but one new med for pain which made my heart rate unstable (a rare but possible side effect) so I dropped it.
Hmmmm. I plead the 5th Amendment to that one! GP's do a great job and can't be expected to know everything about every condition. However, some of the advice I received from GP's about afib was totally incorrect. That includes a close friend of mine who is a Doctor.
I tend to be a replyer rather than a poster but I have so valued the help, support and friendships I have on this site I will aim to post a bit more. Maybe we are victims of our own success in that we have been answering newbies questions so efficiently over the last few years most of the answers are now out there!
Hi Joy. I am not a Doctor and cannot offer medical advice. I will say though that your HR will drop at night. 186 BPM in the day is far too high IMO. 62 - 88 BPM is OK. I assume this is at rest?
Bis can be very effective and if it shoots up again talk to your medic about 'upping' the dose.
123/62-77 70 Day now on Diltiazem 120mg AM and Bisoprolol
at night. Separate CCB and BB.
I was amazed how I was LEFT with high H/R avge day. On Metroprolol and Bisoprolol. It was not enough to just up the dose of these two at separate times.
Dr B Wong private specialist took a history and introduced me to CCB Diltiazem.
I was very happy with Dr B Wong. Happy to be Controlled too.
nice to hear from you Paul and rant as much as you like
I did notice that there are fewer posts myself, but thought maybe people busy with Easter etc etc
I have been quiet myself as woke during the night on Wednesday with another attack of afib/tachycardia. I took a flecainide snd bisoprolol and gtn spray to try and ward it off, but no good. I didn’t want this to last as long as the last attack which was 28th December until end January
Anyway soldier on eh and like you said this forum is so nice to “chat” with people who actually understand what it’s like to have our problems
Hi Pat. Not good news your afib returned but good news you are now back in sinus. And yes - only a fellow afibber will really understand another afibber.
All over the place this morning and my normal heart rate is between 43-45 (I know a bit slow but no-one seems to bother about it much), but this morning about 114 and just a little while ago after yet another flecainide and bisoprolol is 91. Wednesday through the night it was about 135. I am so shaky and weak at this rate, but sometimes when I was taken in by blue light, it was 240 so I should be able to cope, but.....!
now poor hubby has to go for CT scan this afternoon and I think he should drive
thank you. I will I suppose have to chance A&E if it goes to that. At the moment it is bouncing about like anything, but the family have arrived so they might have to excuse me snd I will have an early night and hope it improves tomorrow
Do the breathing technics Tapanac. Deep in through the mouth slowly - hold for a few seconds then breath out through your nose slowly. Rince and repeat.
thank you Paul. Have just tried that. Weird wrong way round isn’t but let’s hope it works. Will keep trying and 🤞still high this morning at 92 but less than the last few days
Thank you for all your help. It’s so nice to talk to others who understand
there….and I’ve been going it your way on and off through the morning with my little granddaughter helping. I thought it would work once I managed the technique. If it did you would have found a new method. Thank you anyway
Good post Paul! I don't contribute much as apart from the very early days of my diagnosis in 2015, my AF journey has been truly unremarkable. I have been most fortunate in that if anything I have less episodes now than in the beginning, only one in the past year. So I have little AF experience to offer but share what I can when relevant, which can often be nothing to do with AF! However, I am well aware that may change and visit every day to keep up with latest developments. So a big thank you to all those who do contribute.
Hi Paul, Thank you for your post. I appreciate your post. I was diagnosed in 2020. Had an ablation Aug 2022. So far I am doing good. I take sotolol and xaeltro. 6 months after my ablation the Dr. lowered my dose in 1/2. I see him in July and hopefully get off the meds altogether. I have had migraines 24/7 since the ablation. So I am hoping when I stop the meds slowly they go away. My bpm have been on the low side of 50 alot. I wear a loop recorder so they are monitoring me. They don't seem concerned, so I am hoping all goes well until my next appt. Thanks again for your input. Sharon
Hi Sharon. I too am on Sotalol and have had no side effects from it. Personally, I function best when my HR is around 47 BPM. For me I have no concerns at all when it is like this at rest - in fact, I welcome such moments. I can't tell you if the ablation is the cause of your migraines or if there is another cause. Best to discuss this with your Doctor.
Paul, the apostle to encourage participation and sharing by everyone… Thanks for the good reminder, Paul.
So… i’ll add a short comment about running:
It might have something to do with my age, but I have found that I feel a bit fresher, and more rested for running if I take some days off instead of doing it every single day lately.
It might have something to do with my age. Though I tell people I am 39 years old, technically, I am 76.
so the only advice I can throw out here from my recent experience is to don’t be shy about experimenting with days off from running.
However, that doesn’t mean it’s an excuse to look for getting on a path toward giving up running ( if anybody is thinking in that direction. ) No matter how old you are… running is really good for you.
… and as the author of the book, “Born to Run” quoted somebody, “A person doesn’t stop running because he gets too old, he gets too old because he stops running.“
With that in mind, though some of my days off include no running other of my days off consist of a limited 20 minutes running.
Hi DTR. Don't worry - 76 is the new 39 so your safe there
I think exercise is something we should all do. Start off slowly and build up as the weeks go on if you are new to it. Always take a day or two off a week but if you run for 20 minutes a day on the other days this is perfect. Swimming is also a good way to build up muscle tone and is good for your heart.
I think that it is pretty easy to work out why the forum is quiet.
Similar to "Bluetonic" I used to post under a different forum name and now look in occasionally. I originally left due the overzealous moderation/suppression of posts that had merit but did not fit the agenda of HU. There were many inquiring minds who were quite rightly not going to follow the unproven science of C19, a science that is now proving to be very questionable but they were constantly down cried instead of posters as PaulB has said, moving on.
Unfortunately one or two were blocked by a certain Admin person (not Katrina) who would not explain as to why posts were just deleted, needless to say others have obviously left or are not bothered because of the forum lacking transparency - a bit of an own goal from the forum Admin I would say.
Hi Jay. It's a shame you feel that way. If it's a troll or a poster just trying to stir the pot then I understand why the posts are taken down. Sometimes threads wonder off topic and that could result in the thread being removed. Maybe admin could just close the thread so new comments cannot be posted and leave it on the forum with a short statement why the thread cannot be commented on further. This would be more transparent and give the OP an idea of why or what was wrong.
It did have the odd poster chipping in whose views were sided with more so than some long term members, which in turn had a few members through PMs wondering if the new posters were HU plants because it did not fit the HU agenda. The posts as such were valid as the C19 vax was causing an Afib reaction with a number of members which is why we were here.
Hi Jay. I doubt HU would put 'plants' on the forum. Personally, I think that when covid first broke out most of the posts were purely about covid and not afib related at all (this is an afib forum after all). However, IMO this changed when members found a link between the vac and having afib following the jab. This is a completely different ball game and should be open to discussion and debate - it's very much afib related. The problem was that there was no middle ground and people were 100% for or 100% against the jab. This led to spats and arguments some of which got quite heated. As far as I can recall I didn't ever get involved in these threads even though I do hold my own (quite a strong view) about the matter. That's all I'll say about covid as the mere mention of the word seems to create a rumpus.
I love the help we get on here. Only wish I could have found it years ago. I try to encourage anyone who is worried about pace and ablate as it has really helped me. Incidentally my cardiologist has said I am not to have another Covid booster. Gor congestive heart failure after the last one!
I take part a bit, though like others I mainly reply to posts. Since my failed ablation, I am really just trying to come to terms with the way things are since my somewhat gloomy EP consultation. Yet I don’t want to put any anyone else off the procedure which could very well work for them.
I do notice that posts from new people sometimes get missed though, or AF people post on the BHF forum - which I did last year when I first joined the forum. As posts go up to the top of the forum with each reply, it’s so easy for new posts to be missed. Anyway, I try to reply and bump the post up, mention the AF forum etc.
Sometimes the anti-(vax, ‘big pharma’, modern medicine, anticoagulants etc.) posts do get me down. I ignore them, but it could be off-putting to some new people who are just looking for reassurance and practical info. These posts tend to be popular and stay up near the top of the forum, resulting in posts from new people getting missed.
Hi GC. If you click on posts there is an 'unanswered post' link to unanswered threads. It's worth checking from time to time in case a newbie has posted and the thread slipped though the net.
Great Post Paul. This forum is an invaluable source of information and support. I tend to not post a lot as by the time I see a post there are generally already replies from people more knowledgeable and with more in depth AF histories than me.
Must have been taboo because the post has disappeared when you click on the link! Looks like you have been censored. I would love to know what you wrote. If it's not too much trouble perhaps you could PM me.
Hi Anne and thank you for sharing your experience. I'm sorry you had such a bad experience with the b. My Afib started last September and rapidly became persistent, within weeks of the b. I was so fit and well previously. I had the b at same time as flu jab which didn't help. Discussed this with my EP and we weighed things up and the millions of lives saved due to vac. But he did acknowledge the link with Afib saying inevitably there is shrapnel. He reckoned about one in 20000 - much lower than figures associated with hospitalised cov. So, I'm thinking of myself as an old soldier who did the right thing but got caught on the edge of the blast! If my cardioverion works next week I'll be delaying any offer of a b for a while! Take care and hope you feel lots better now.
I just checked - you posted on the BHF site. The BHF site is much stricter than this forum and tbh has now got to the ridiculous stage when jokes are no longer allowed.
You could try reposting on this forum only as the Admin are much more tolerant unless and/or people become abusive to another forum member. Then they will remove the abusive post and often close the thread to further replies. It seems that on the AFA forum take down a post which is way out there and obviously provocative or marketing which Admin will then take a post down immediately.
Failing that we could have a PM group or even our own code word - because I really object to the blanket censorship approach about a subject that involves our health, affects our AF and not having the ability to discuss it.
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