The folks over at NewLifeOutlook reached out to me a couple weeks back about writing a guest post for my blog. When I asked them what they had in mind they said they wanted to put together a list of online forums and communities for afibbers. I thought it was a great idea. With that, they wrote the following post for your reading pleasure:)
December 2017 Update: I recently wrote my own article on this topic. Get the updated list of the best a-fib forums, blogs, and websites for 2017.
Connecting with Other AFibbers Online
Atrial fibrillation can be an isolating condition. It’s natural to lose out on lighthearted social connections when you’re worrying about palpitations, or teetering on the edge of anxiety. However, reaching out for a helping hand can bring real physical rewards.
Support groups have been around for quite a while, and for good reason: a shoulder to cry on or a friend to lean on can make a crummy day way more tolerable. But with technology advancing so quickly there are more and more virtual outlets for socializing. You can even get AFib apps for iPhone and Android devices. That means you don’t have to leave the comfort of your own home to find the comfort of an understanding community.
How Virtual Support Can Make a Difference
Getting the help you need is always a good idea, but online AFib communities allow you to give back, too. In fact, that interaction is what can sustain hope, optimize your approach, and push you to get proactive in your AFib management.
Sense of Belonging
Although it can seem like a small part of the puzzle, a sense of belonging — of being a valued part of a community — can be incredibly important when you’re living with a chronic disease. Many people with AFib find it difficult to share concerns or seek comfort from friends or family, since they can have difficulty understanding the physical symptoms and emotional fallout of the condition.
Don’t underestimate the power of an understanding friend, even if you’ve never met face-to-face. When you can talk about whatever comes to mind, without the need to explain or justify your feelings, you might just find that you express yourself differently, and will genuinely enjoy the dialogue.
Atrial fibrillation is an anxious disease. It makes you anxious, it’s triggered by anxiety, and the symptoms are physically worrying. It’s not unusual for sufferers to get caught up in the anxiety, tending to every small discomfort and jumping to worst case scenarios.
One of the best things a support group can do for you is ease that worry. Simply talking to other people with similar symptoms (and the same concerns) can be enough to release the pressure that’s building in your own psyche. Even if you can’t find a solution together, at least you can share some empathetic thoughts and advice, and that can boost your resilience.
AFib can steal your self-confidence, motivation, and ambition. It can leave you feeling like you have little control over your body, and by extension, your daily life. However, connecting with people that have walked your path before can shed light on treatment options, challenges to expect, and inspired coping mechanisms. When you can draw on lots of knowledge and wisdom, you can stay one step ahead of your opponent.
Developing control over your situation doesn’t mean you single-handedly overpower your Afib. Online support is not a replacement for your doctor’s orders. Instead, you make small gains, like learning better ways to calm your nerves during an attack. You can also offer your advice to others who might be looking for answers, which can be just as empowering.
Popular Forums and Communities for AFib Sufferers
The internet is vast, and there are plenty of places you can go to discuss all sorts of dilemmas. Of course, it makes sense to seek out people who understand precisely what you’re going through; AFib forums are your best bet for building friendships and grabbing some welcome advice.
Here are some great afib forums and communities to begin your journey:
AFib Town. A big, bright site full of informative resources and plenty of tips to keep you on a healthy path, Afib Town is certainly one of the most comprehensive and visually interactive AFib sites out there. If you’re looking for variety, you’ve come to the right place: here you’ll find lots of updated forum discussions coupled with medically-edited info at your fingertips.
AFib support group on Daily Strength. This is THE place to go for active health and medical community forums. Not surprisingly, Daily Strength has a popular AFib community, which means there are many people there all the time to help and support a newcomer. Topics range from casual complaints to technical discussions on medication and procedures, so you’re bound to find a thread that suits your style and your needs.
Important Update on 9/9/16: Daily Strength is no longer THE place to go. In fact, this resource should be taken off the list. Why? They recently launched a redesign making the forum virtually useless. They have lost practically their entire audience on their afib forum because of it. What used to be such a simple and easy forum to use is now difficult to follow and impossible to navigate through. It’s such a shame too because it was a good forum but it’s a ghost town now since the redesign launched.
A-Fib.com Support Volunteers. Unlike other open forums, this service on A-Fib.com links AFib patients with other long-time patients who have undergone successful treatment, and have managed to maintain a happy and successful life with AFib. One fantastic aspect of this one-on-one relationship is the attention you receive, plus the hope that you’ll eventually make it to the same stage of recovery as your volunteer.
AFibbers.org. Running for 16 years, AFibbers.org is the oldest online AFib community in existence. It may look dated, but the forum is very much active and holds a vast amount of knowledge. For some of the best in-depth AFib management and treatment information, AFibbers.org is a must-visit.
Atrial Fibrillation Support Forum on Facebook. If you’re looking for sound advice and discussion on social media, check out the Atrial Fibrillation Support Forum for up-to-date information.
Finding Your Place in an Online Forum or Community
Although it can be tough to join in an online group for the first time, once you get the hang of the forums, you’ll know where to go for whatever you may need. In order to build a base of friends and get the support you’re after, you should approach any community with realistic expectations and a generous attitude.
Don’t expect sound medical advice. Unless the group is moderated by a medical doctor (some are), it’s important to take any advice as a suggestion, not a prescription. Freedom of expression is a great aspect of any online community, so there will be lots of strong opinions parading as facts, and plenty of enticing treatment alternatives. Remember that your doctor and health care team are still in charge when it comes to deciding on medications and invasive or non-invasive treatments for your AFib.
Do give back. Popping into a forum to ask a question is absolutely encouraged, but try to balance out your requests with kind support and offers of advice when others are searching for answers. Simply relying on a community whenever you need reassurance is a one-sided relationship, which is not the healthiest way forward. Reach out to a stranger’s posts now and then, or start a supportive thread. You’ll find small gestures go a long way to forging connections, and building your own self-confidence.
Keep an open mind. If you’ve been handling your condition on your own for a while, you might be somewhat set in your ways. It’s common to assume you know what’s best for you – in many cases, that’s absolutely true. However, there’s a wealth of experience, perspectives, and opinions out there, and it’s never a bad idea to entertain some new ideas, especially when you’ve hit a dead end in your disease management. Just be sure to check with your doctor before making any sweeping changes to your AFib treatment plan.
It takes time to carve out a place in a community, and while there are many rewards to come, changes don’t often happen overnight. Instead of a curative measure, consider your online community a long-term tool to help you handle your Afib in healthier, more effective ways.
Angela Finlay is a freelance health writer who believes that variety is not only the spice of life, but essential for happiness and longevity. As an avid runner, rock climber, artist, and vegetarian cook, her passion for health and vitality stretches into each corner of her life. You can find more of Angela’s writing on NewLifeOutlook.
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Well, it’s been 7 years since the last AFIB event and that was caused by my carelessness is burying the magnesium supplement deep in the trunk of my car then driving two thousand miles with a shattered arm. When I showed up at the ER the attending physician declared “You cannot have magnesium deficiency. Magnesium is the most abundant element on earth”. I replied “Humor me, include a magnesium count in the lab work”. 2-hours later brought a puzzled MD clutching an Rx for 400mg of magnesium. My latest adventure occurred last August. I was enduring nightly fits of Bradycardia — no big surprise because I knew I had 2nd stage heart block. Frustrating because twice I went to the ER and the Bradycardia reverted to normal 60+ pulse when they checked it. The 3rd time was a charm — the ER admittance nurses freaked when they encountered a pulse of 38 to 42. My BP was low enough to prevent me from walking upright. Yeah I was admitted and a cardio surgeon determined that an AV dual electrode pacemaker was in order. That fixed the slow pulse. My home treatment of the Magnesium and severely limiting sodium intake has thwarted yet another malfunction. No Afib attacks, a pacemaker should really cure all that ails me, right? Sadly it is wrong. I still have episodes of a hard thumping regular beating heart and the cardio surgeon was wise enough to Rx Metoprolol. 25mg BID (twice per day) I take it when the thumping annoys me. The pacemaker limits slowing of the heartbeat to 70 then it kicks in. The reason for this recollection is to share with others the dedication needed to stay with or on top of symptoms. Sometimes the effort needed is taxing. I have entitled this the “What Now?” syndrome. Another newcomer is the one Aspirin a day regimen. “No more coffee for me thank you” started today. So, you might want to chuckle at my cardiac odyssey if your regimen is not as complex as mine. It is worth it. A friend who used to grin at my efforts to limit Afib is now in a rehabilitation center after suffering a stroke at age 72. When they had me ensconced at the medical center I went through three days of apparently every known physical, electronic and blood labs known to man. I felt like a guinea pig. But when I saw my friend paralyzed those memories evaporated like the morning dew. Keep at it — trying to understand your Afib and how to manage it. I had to find out for myself that my BiPAP therapy was almost useless unless I slept on my side. The Sleep Study doctor acted confused when I confronted him about it. It is surely a blessed event when a discussion forum like this may uncover new ideas and reinforce self help efforts.
I hit a couple of your suggestions and one I found. Unfortunately, the one I found had some very closed minded and ignorant admins. No, it wasnt stopafib…lol. I behave there. The posters there for the most part were great, reminded me of the old DS site. The mix is about the same everywhere, 75% are happy with the status quo of allopathic treatment and 25% open due to the fact that 6 ablations or black box warning meds simply failed them. Long story short, I was kicked and banned. I will wear that as a badge of honor.
On afibbers.org, I think that has a good mix of posters with some freedom to share their experience. Yeah, I’ll visit here on a forum. Just don’t kick and ban me!
Thanks for the update. Now I’m curious as heck as to what forum banned you…lol! I’m not sure I’m going to launch a forum here now. I’m talking with Shannon over at afibbers.org about a possible partnership where I will just recommend my readers join me over at his forum. His forum has been around for 15+ years. It’s the oldest afib forum on the internet. There is a wealth of information over there.
I like their forum because Shannon and their members have the same philosophy I have. That is, you can’t beat afib with supplements and lifestyle changes alone. You have to marry those things with traditional medicine, specifically ablations (but only by the best EPs). Many of their members have been afib free for years after their ablations.
Healthunlocked. They need to change their title to , posters locked up. The topic was anti coags. I simply posted the stats from CHADS showing the stroke risk vs doing nothing. About 1.3%. difference. The bleed risk is 1.3%. So, whats an afibber to do? Of course it got worse from there.
My philosophy differs somewhat. You can’t cure any condition naturally or conventionally unless you find the cause or underlying issue. Lifestyle change is always a plus for overall health and it certainly cant hurt. Meds, ablations and supplements are all basically treating symptoms. I tried several supplements before I stumbled on one that worked and rid me of PACs. Others tried to no positive effect.
However, I still have not found the root cause and am bound to a daily regimen. The rock stars of ablations have their stubborn patients who had no benefit also, its not 100%. The jury is still out on ablations for the long term negative effects. 1 or 2 mostly likely are fine. 3 plus, I’d be very concerned for radiation levels, brain bleeds and dementia. More than not these days are afib free and soon we will know all the ramifications.
“Posters locked up” – too funny. I’m more inline with your way of thinking as well. I tend to go against conventional thinking as well. For example, I’m not convinced that avoiding certain foods helps.
Everyone says afibbers MUST avoid alcohol, caffeine, and chocolate. I consume all three. They don’t seem to help or hurt. Unless you’re taking copious amounts of these things, I doubt they really have an effect on your afib. For some people *maybe* but not for everyone. As a result, I tell people to let their body be their own guide. If they eat chocolate and they go into afib, then obviously avoid it. But if you can enjoy a little chocolate and nothing happens, enjoy it!
I also agree with you that all these things we do today are to treat symptoms not the cause. The problem is, we’re probably YEARS away from knowing what causes afib – if we ever find out. I was just thinking about this the other day. It seems we no longer CURE things. We only come up with treatments. When is the last time we found a cure for anything?
Personally, I don’t care what the cause is if the treatments work:) If I can stay afib-free for the rest of my life after 2 or even 3 ablations, then I’m fine with that. Yes, it would be great to learn the cause and tackle it there but in the meantime, give me a treatment that lasts!!
I have to agree for the most part with the food triggers. It’s not an exact science. I quit and added back all those and more. Now I don’t drink and coffee is mostly in the AM only. If I drink later in the day, heart does some flopping. Personally, I think we’re better off without alcohol and caffeine.
At your age ablations are more likely to be successful and less intrusive. At my age, as much as I detest meds, I would opt for meds. I take 2 meds now unrelated to afib and tolerate them fine. I tried supplements for a year with minimal success so unless something else is out there, I’m on these meds.
I feel better and have no serious side effects. Surprisingly, ND prescribed. In all honesty, these meds are not treating symptoms but replacing deficiencies in my system. It is possible that this was related to my afib, but as usual with the varying causes for our condition, very difficult to verify.
I agree with you that we’re all probably better off without alcohol and caffeine but my philosophy is life is too short to deny oneself of all “simple” pleasures. I think moderation is the key to everything in life:)
Hi James, I was interested in your comment about food triggers. After 15+ years I have worked out that I am intolerant to Tyramine – found in most foods unfortunately.
E.G. tomato soup, vegemite, yeast, alcohol, chocolate, cheeses etc will send me into AF within minutes especially if I eat on an empty stomach. The AF lasts 12 hours and is quite debilitating. But I can stop AF by avoiding high tyramine foods, and if I slip up – e.g., eat Pate or nuts then I can reduce the amount of time in AF by taking 3 charcoal tablets. I assumed that Tyramine was poisonous to me and the charcoal deactivated it in the stomach. This regime works for me. So at last I know what causes my AF:)
Greetings my friend. I’ve been hoping you would have gotten control over those pesky PA(V)Cs by now. I believe at some point they will subside with possibly some lifestyle changes and diet/supplements. Meds seemed to aggravate mine. It seemed as tho my heart was always trying to catch up on Flec and Metop.
I digress from this blog tho. Not sure if you’ve been to DS forum lately, but they changed the format dramatically and lost 90% of the posters there. They went to a site I have never been fond of for various reasons, and most likely will not feel comfortable posting there. Thanks for sharing these other sites, and hoping your NSR speed.
Hey James! Welcome to my blog. Regarding my PVCs and PACs, I have had an awesome couple of weeks. I don’t know what happened but they literally went away overnight and today marks my 14th straight day of no PVCs or PACs (that I can feel anyway)! I’m crossing my fingers and literally praying to God that this trend holds up!
I’m fully aware of the Daily Strength forum and their rapid downfall. It’s such a shame too. I still can’t believe they launched such a horrendous redesign and have stayed with it despite losing all of their audience. I’m sure it was a corporate decision and they don’t even realize what they’ve done (or simple don’t care).
Let me know what forum you end up visiting regularly. I’m partial to afibbers.org but everyone has their own likes and dislikes. I’ve tried starting a forum here a couple times and both times they flopped. I couldn’t get a single person to participate. However, since the audience of this blog has grown I may try it one more time. What’s the saying? Third time is a charm…lol.
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