StopAfib.org was recently featured in an article on Patient Web Exchanges Provide Benefits, which talked about how patients with better social networks have better outcomes.
There are plenty of atrial fibrillation patient discussion forums and social networks. Below are some places you may want to check out, some of which I hang out at pretty regularly:
- A-fibcures Forum — Non-pharmaceutical cures for afib
- AFIB Support Forum — Support group for those challenged with afib
- Lone Atrial Fibrillation Forum — For those with lone atrial fibrillation (LAF means no heart disease) — this is THE place for dietary approaches to afib
- P Atrial Fib Support — For information and emotional support to make afib more bearable
- Atrial Fibrillation Association UK — Newer AF support group created by the Atrial Fibrillation Association in the UK
- Daily Strength Atrial Fibrillation Support Group — Less busy as a discussion forum, but provides patient journals
- Atrial Fibrillation Blog — Provided by StopAfib.org for your comments and discussion
For future reference, these discussion forums are also listed here at the Atrial Fibrillation Blog, under Afib Forums, and in our Patient and Caregiver Resources at StopAfib.org.
For tips on joining and participating in these discussion forums, read this full Patient Discussion Forums article.
Please share any other atrial fibrillation discussion groups or afib social networks you recommend here.
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Attention: Atrial Fib Patients & Caregivers – Paid Focus Groups in Ontario
We are conducting an important study among Cardiac Arrhythmia patients in order to hear your opinions and perceptions on the treatment and management of different heart conditions. The purpose of this study is for research only and your anonymity is assured.
These sessions are taking form of Focus Groups which are a group of people (usually 6-10 people) who gather in a room and share some opinions about a particular topic, in this case, medications of Atrial Fib. These are 90 minutes in length and would provide an honorarium of $100 to thank you for your time. These focus groups will be held on the evening of Wednesday September 16th or Thursday September 17th at one of our research facilities in North York.
It is very important to our research that you participate in this study. We would appreciate a response at your earliest convenience. To sign up for this study please send us an e-mail (with your contact info) to [email protected] or call (toll free) 1-877-685-2239 x2.
Thank you in advance for your taking the time to review our invitation and your prompt response.
Best regards,
eStyle Group
Contact for this study: Sam Dhalla
Ph.: 1-877-685-2239 x2
Email: [email protected]
Web: http://www.myfocusgroups.ca
I recently was diagnosed with A-Fib. I knew I had arhythmias but never had any attacks, until I was prescribed Azithromycin in Dec. 2009.. I was on a “statin” and mentioned to physician and pharmacist I did not think this an appropriate drug for me. The reply was “it is only for 5 days.” I took the drug.
I had some funny spells of dizziness and escalating b.p. from Jan.-thru June 2010 but nothing showed up on EKG, etc. Even had a brain scan, and a CT neck through pelvis scan, nothing extraordinary, except signs osteoporosis, some artiery calcification, evidence of surgeries, all stuff already known on previous studies..
Then in July it was prescribed again and again the same dialog. When I took the 4th tablet, all hell broke loose. My b.p. when wild, my pulse wildly swung from 70-150. I thought I had O.D. on cough syrup or something. The ambulance was called and I went to ER which administered several drugs including oral clonidine and sent me home admonishing me to take the 5th tablet. Guess what! After I took the 5th tablet, it was back to ER.
It has been with me ever since. I am on too many drugs; have seen and cardio physi-electrologist (problemly not quite correct) highly recommended in AR. He hospitalized me and put me on Tikosyn which is blunting the attacks somewhat. But I still have them and mainly control them with clonidine in the manner of ER but do not take that drug regularly.
An ablation has been suggested but no details as to type. The last time I saw the same cardio; he never mentioned ablation but said I was on too much medicine and come back in 6 months.
He did not say which meds. I have COPD (non-smioker), osteoporosis (heriditary) and osteoarthritis, glaucoma, extra dry vaginal condition, with a little GERD thrown in and take Rxs for each of these problems
.
I had renal cell carcinoma in 1996 w/o reoccurrence to date.
I feel specialists, in general, never consider your health as a whole, and this particular specialist makes me feel like I was run through like horses.
I know my vagal nerve is somehow involved too because if I eat a large meal I have an A-Fib attack. If it is any clue, when I do have a really bad attack I void a large volume of urine, like over 1500cc.
I always know when I’m in AFib. Not only can I feel it & it’s painful. It makes my chest hurt. Standing & walking make me dizzy. I also spend a lot of time in the bathroom. Peeing. A lot.
Hi Sarah,
Thank you for sharing your afib story and your symptoms. You may be interested in joining our patient discussion forum (http://forum.stopafib.org/index.php) to connect with other patients who collectively have a great amount of knowledge and experience. You may want to post your story and questions there, and you may also learn a lot from others who have already shared their experience. I hope that you are able to find others to connect with there that can give you advice, suggestions, and hope. There are many resources on living with afib that you might find helpful. Best of luck to you! We wish you sinus rhythm.
Hi Everyone,
I am looking for Atrial Fibrillation patients in Canada to conduct some face to face and phone interviews. Please contact me if you are interested in taking part in the study.
Cheers,
Taheer
Looking for Atrial Fibrillation Patients:
Are you on Pradax or Warfarin?
Attend our group discussion and get paid for your opinions!
$75 -$100 for 1 hour of your time.
Call us: 877-685-2239 x 201
Sign up: http://www.myfocusgroups.ca
I have had A-Fib and Congestive Heart Failure for years and I am only 61 years old. I am on Coumadin and yesterday I fell backwards in my bathtub and I have a large red mark because I’m on Coumadin. I take Dilitiazem, Multaq, Digoxin, Coumadin, and Bystolic. I have had three shock treatments for my heart and I am still in Afib. The doctor said the only solution is to increase my Bystolic. He does not want to give me a pacemaker but as soon as I start walking my heart races out of control. I don’t know what else to do. Can anyone give me any advice?
As a sufferer for many years I have found the s
olution. Afib is a lack of electrolytes most magn
esium and potassium and it is diet related not caused by a lack of drugs. The MDs told me I would be on drugs for life that was when I was 63 , I am 78 now and have not taken any drug for several years. Wheat affects the colon and causes you to not absorb minerals and the result is afib, so I ditched the wheat started juicing and stopped the processed foods.
I too have CHF with an EF of 25% and have been on calcium channel blockers which do serve to control my heart rate, but Diltiazem is a negatively ionotropic drug which is is not appropriate for someone with a weak heart. I take full strength aspirin for an anticoagulant ( no side effects), CO Q 10 to strenthen the heart muscle, Metropolo (was on Coreg, but it did nothing) to lower my heart rate), and now take 0.5 mg of Xanax when needed which lowers my heart rate within 25-30 minutes into the 50’s, 60’s, and for the most part keeps my heart rate under 100bpm. I also take 60 mg Lasix to keep my lungs clear. Since taking Xanax I’ve felt more ‘normal. Coumadin, I refuse to take because of the side effects (bleeding), which could cause a stroke from bleeding in the brain (my choice).
Calcium channel blockers are given so the calcium magnesium ratio can improve since our diets have a huge amount of calcium and very little magnesium. The solution I found was to supplement the magnesium and go to a diet of raw veggies and such and I have also eliminated all wheat since the wheat can prevent the body from absorbing needed minerals. The key here minerals, to much calcium not enough magnesium you need electrolytes to make the nerves work properly, low electrolytes creates afib. It takes about a year to get the magnesium levels up to where you no longer have afib if you take the best magnesium. Not all magnesium will get the job done. If an MD tells you that your magnesium levels are fine just remember that only 2% of magnesium is in the blood the rest is in the cells and can not be measured.
I was diasgnosed with LAF over a year ago. Of course the cardiologist wanted me on Coumadin and some other pharaceuticals. I refused. The Afib slowly became more frequent. I was taking several supplements which seemed to help, but the incidents kept coming.
I am now on 5 grams of L arginine and 5 grams of Taurine, 600 mg Alpha Lipoic Acid, 300 mg Resveratrol. I also take 600 mg chelated magnesium and 200 mg potasium daily.
No more AFIB. Gone!
http://george-eby-research.com/html/taurine-l-arginine-arrhythmias.html
Your magnesium levels must improve and drugs will not do that. It takes about a year or longer to get magnesium levels up to where the afib goes away if you take the right magnesium. I recommend a book by Dr Carolyn Dean called the magnesium miracle.
I passed out on a stress test ( not a good idea ) last april, and was rushed to er. for a heart cath. Cath was clear and they gave me an event monitor for 30 days. We found afib, bradychardia, tachichardia and I am also having trouble with syncope and pre syncope upon exertion. I have no risk factors except for two sleep disorders, obstructive sleep apnea and organic circadian rhythm sleep disorder delayed sleep phase type. I know I have been suffering with these for atleast 20 years before they were discovered. The ep study also showed very high atrial flutter 9 about 350 bpm ) I am currently on cpap for sleep apnea full strength aspirin and diltiazem quick release 60 mg. I also take neurontin for spinal arthritis and flonase so i can breath on the cpap at night. Did I mention I am a 43 yo old male never smoked don’t drink and was excercising daily. I also have trouble breathing when i lay down at night, does anyone have any ideas what to do next. Alot of my symptoms are gone but constant shortness of breath and dizziness when I walk or exert myself are making it difficult to work or do much of anything, oh and did I mention I can’t eat at all or my weight skyrockets. Could this be the start of heart failure.Think maze, mini maze or third fatty pad surgery will help? Thanks.
Try CoQ10 – at least 100 mg – and with naturals, they work better and better over a period of time 🙂
Michael LF, do you have an update? I have symptoms similar to yours. thanks
Hey everyone! I’m raising money on IndieGoGo to fund my Documentary on Atrial Fibrillation. I believe we can help each other by a collective group of insights we’ve all learned while living with Atrial Fibrillation. I’ve had A-Fib for 8 years and want to bring people together who suffer the same. Please help support me by donating any amount and sharing this page to the masses with social media. Every little bit helps and will allows me to educate someone who suffers from A-Fib. Thanks! http://igg.me/p/53222?a=328357
Can a heart healthy diet help reduce a- fib symptoms? After reading Doctor Caldwell B Esselstyn’s “Prevent and Reverse Heart Disease;” I decided to follow his plant based diet. In the book he explains that the western diet is the root cause of many diseases from breast and colon cancer to high blood pressure, diabetes and coronary heart disease. “Over 500,000 by pass surgeries are performed each year in the US alone and 2,700 people die due to complications from surgeries and stent procedures!” Doctor Esselstyn took about 24 patients each of whom had severe heart disease and or diabetes and high cholesterol and most had multiple by pass surgeries and stents and he placed them on his plant based diet. Low and behold, after only a few months on the diet, they all found relief from their symptoms, completely stopped and or reversed their disease and diabetes and most of the patients dramatically reduced or stopped taking their medications! After being on the diet since December, I dropped 20 pounds, my cholesterol dropped from 220 to 160, my blood pressure went from 125/78 or so to 105/62 or thereabouts, my resting heart rate dropped from mid 80’s to the mid 50’s to low 60’s , even the constant leg pain I had which were thought to be related to either Muscular Distrophy or atherosclerosis completely disappeared! Doctor Esselstyn’s associate T. Colin Campbell author of the “China Study” which compared the plant based diets of rural cultures to the meat and dairy based western diet found the plant based diet played a similar role in reducing and stopping the growth of many forms of cancer tumors including breast, colon and prostate cancers. Mr. Campbell said; “the cure for cancer and many other diseases will not be found in a pill or a new procedure but in the diet.” I would recommend these books to anyone who wants to improve their overall health. You can also listen to them speak on you tube.
It not only can but it will. I corrected my afib
I have had lone AF since my 40s I am 65 now. I used to ignore it and just wait for it to stop. It would come in bouts so I had long periods without it. I didn’t seek medical advice until 2010 Boxing Day when I couldn’t get it to stop. I had eaten a lot of liquorice and I had a bad cold. I went to the er and was given a drug to stop it and sent away. I had another a year later when my husband made me jump! I went to er again and they gave me Bisoprolol fumarate. I also found out I had high cholesterol so was put on statin. I saw a consultant who prescribed Flecainide when I had an attack. Since then I have had odd palpitations each day and about 5 AF attacks. I have found that bananas increase my palpitations. I take 3 flecainide pill which stop the attack in 2 hours. Last time I had an attack I was on my way to playing badminton I decided I wasn’t going to miss playing so I played and by the end of the hour it had stopped! I have now found that if I am brewing up for an attack I take 30mg of asprin and it stops it within 15 minutes. Amazing I still take 2.5 mg Bisoprolol not sure if it does much, I stopped the statins my cholesterol in low now.
Spray Icy Hot on your chest or pulse areas and neck…this brings AFIB to a halt. Try it!
I am a 24 year old female recently diagnosed with Atrial Fibrillation. I am currently on a heart monitor for the next three weeks. As I’ve only seen my cardiologist once since the diagnosis, I have many questions and concerns. I don’t even really know where to begin.
I am a mother to a very hyper 2 1/2 year old girl and I work a semi stressful 50 hour a week job. I noticed some minor chest pains here and there as well as dizziness and such on and off for a while now. I would just ignore it or assume it had to do with the excessive amounts of caffeine I drank. (1-2 coffees a day with 2 espresso shots each, as well as either a red bull or a 5-hour energy shot, worse case days all three). As the symptoms progressed I got more weary, but still ignored and put off. It wasn’t until about a month ago when I was having trouble breathing that I finally went to the doctor. I thought it was probably asthma… I didn’t imagine that they would tell me I had an irregular heart beat and recommend me to a cardiologist.
After a few tests that spanned over the next few weeks, I was finally diagnosed. Atrial Fibrillation. I had no idea what that meant. He had told me that I have two different heart arrhythmias. Being afraid and alone, I really didn’t know what to say, what to ask. I just nodded my head when he told me that I need to be on a heart monitor for 4 weeks and to see him again when I am done.
Since my very first visit with the doctor, my symptoms have gotten worse. It went to chest pains every few days to every single day. Dizziness every day. Light headed every day. It has seemed to slow down to every other day. It gets so bad to the point I feel like I am going to pass out. I know it doesnt help that the 10 hours a day I work I am on my feet the whole time. I was literally in tears today because I just didn’t know what to do.
I guess I am just looking for some advice. All the stories I read are from people much older than I am and that, to me, is scary. I feel that I am much too young to have this problem already. Both of my grandmothers have congenital heart failure, so I’m wondering if maybe I was just doomed to have a bad heart.
The dizziness is a big concern of mine. The chest pains I can deal with, but the dizziness worries me, especially when it happens when I am driving with my daughter in the car. Is there anything anyone could recommend to me, if not to stop, in the very least decrease the amount of times I am experiencing the dizzy spells? Anything can help. Thank you. 🙂
JessicaLyn,
Thank you for sharing your story. You may be interested in joining our patient discussion forum to connect with other patients who collectively have a great amount of knowledge and experience. It’s possible you may want to post your story there, and you may also learn a lot from others who have already shared their experience.
Wishing you sinus rhythm,
Melissa
Hi Your posting was some time ago hence I hope you have improved now. JessicaLyn, I thought I was the youngest Paroxysmal and long term Afib patient as I started having all sorts of arrhythmia in my late 20’s. I am now 75 and only just had a 2nd Ablation 5 months ago. However I still get another type of fast heart rate which is constant and last up to 24 hours and then converts to SR spontaneously. I am naturally disappointed although optimistic things will slowly improve. Indeed you are very young to have Afib but maybe it is some comfort that I am still here at 75 when my problems started when I was about 27ish. On Amiodarone and Pradaxa. I am hoping I will not need a 3rd ablation. You take good care and be positive things will work out. I am English but live in Singapore where medical expertise in this field is fantastic,
I have AF and I am waiting for a pacemaker to be implanted. I had to have 10 teeth extracted. I have been taking co codamol for 3 days which is the limit. Which pain killer is allowed with AF which is stronger than paracetamol. Thank you.
Hi Cecilia,
You might consider joining our patient forum so that you can connect with others. It is located at http://forum.stopafib.org/. There you can talk with other patients who have a great amount of knowledge and experience. You may want to post your story and questions there, and you may also learn a lot from others who have already shared their experience.
You’ll need to join to see and participate in the discussion. To do so, go to forum.stopafib.org, and click on the big red button that says, “Sign Up”. Once you sign up by registering your email address, your preferred username, and a password, you’ll receive an email to confirm your interest in joining the forum. Click on the confirmation link in that email, and you are ready to go. You’ll be able to log into the forum, read the discussions, and participate.
Please email us at [email protected] if you need any help or have more questions. Wishing you sinus rhythm!
Fyi I had ablation 2 years ago and sill have the odd ocasion of afib for a short period. I have found that Mag smart works amazing i have a half a scoop and the afib goes away for the full day. My son is 20 and suffers from the same and we both take MAG SMART I wish my cardiologist would have told me about this remedy when I was my sons age. Please tell your friends because this actually changed my life.. try it… trust me it really works steve bean from canada.
Hi l’m a long time AF sufferer.Had my first attack aged 34 after playing a round of golf completely out of the blue. I’m now 72 and still looking for a cure.My type is paroxysmal episodes and can last up to 14hs and then back to sinus rythem.
I underwent ablation 5yrs ago and was free from AF for approximately 2yrs and then the problem gradually returned. Recently[july2019] l experienced a cluster of maigraine headaches which was unusual for me although l do have a maigraine once every 6 mths or so.l consulted my local M D and she prescribed Amitriptyline 10 mgs daily.The maigraines stopped and the AF has almost completely disappeared also,which begs the question are the two related,am l right in thinking that the nervous system possibly the Vagal nerve in particular may be irritated in some way causing both problems to occur?
It seems to me the present preferred approach to treating AF is to lesson the symptoms with drugs and where possible ablation, where as the underlying cause remains undetected.
Thanks for the opportunity to air my thoughts on my nemesis.
Cheers John.
Hi John,
Thank you for sharing your afib story and your thoughts on your nemesis. You may be interested in joining our patient discussion forum (http://forum.stopafib.org/index.php) to connect with other patients who collectively have a great amount of knowledge and experience. You may want to post your story and questions there, and you may also learn a lot from others who have already shared their experience.
You’ll need to join to see and participate in the discussion. To do so, go to forum.stopafib.org, and click on the big red button that says, “Sign Up”. Once you sign up by registering your email address, your preferred username, and a password, you’ll receive an email to confirm your interest in joining the forum. Click on the confirmation link in that email, and you are ready to go. You’ll be able to log into the forum, read the discussions, and participate. I hope that you are able to find others to connect with there that can give you advice, suggestions, and hope.
Best of luck to you! We wish you sinus rhythm. Have hope. Let us know if we can help in any other way.
John,
Thank you so much! I was researching this very question and I am considering taking 10mg of amitriptyline for the same reason–I believe it may calm my irritated vagus nerve. At times, I can literally feel the nerve from the top of my left shoulder , through my heart, and into my lower abdomen I am diagnosed with paroxysmal vagal afib I, too, feel that we are treating symptoms rather than cause. New research is looking at the possiblility of viruses, particularly strains of the herpes virus, being harbored around the vagus nerve. Research needs to be done into as to why the vagus nerve triggers afib.
I’m 19 years old. As a child, I would get weird types of palpitations sometimes when doing physical exercises. Many times I needed to sit out of PE for about 5 minutes. I never thought much of the episodes. At age 18 I got a Covid-19 infection during which I had chest pain and significant trouble breathing. About a month after the infection, I drank 3 cups of coffee and suffered such a fast heart rate that blood struggled to circulate around my body, as a result of which I fell over. After having 2 liters of water put down my esophagus, the doctor said that I was suffering from a caffeine overdose and that there was nothing wrong with my heart, as he checked. 3 cups of coffee a caffeine overdose? Seemed odd. Nothing happened for 6 months until whilst on a public beach, I suddenly felt a thump and a chaotic orchestra in my chest after which my heart started beating very fast, along with a chaotic rhythm. An ambulance was called and the heart rhythm was checked, but somehow by now the irregularity had vanished and it just showed a very fast (170 bpm) stable heart rate. The doctor ordered regular visits to a cardiologist, who would put me on a Zenicor heart monitor. He noticed that I had a resting heart rate of over 100 bpm. After a few months, I was diagnosed with Inappropriate Sinus Tachycardia as a complication of long Covid. I showed traces of myocarditis, and most likely that chest pain and shortness of breath during my covid were symptoms of that. This relieved me but it didn’t explain all. Why did I sometimes feel the pulse was odd and irregular? Why did I, as a child, think I was having arrhythmias only to coincidentally end up with one after a Covid infection? About two months after my IST diagnosis, I suffered an attack of irregular heartbeat at home in the late of night. This time, the rhythm was captured: turns out that I have A-Fib. I am now on daily beta blockers, and ablation is a possibility. It feels very odd to be this young and have daily complications like nausea, dizziness and shortness of breath and being physically limited. I’m determined though, to live my best life and not let this stop me.
Arno,
Thank you for sharing your afib story! I am sure there are other young patients out there who would benefit from hearing your story. You may be interested in joining our patient discussion forum (http://forum.stopafib.org/index.php) to connect with other patients who collectively have a great amount of knowledge and experience. You may want to post your story and questions there, and you may also learn a lot from others who have already shared their experience.
You’ll need to join to see and participate in the discussion. To do so, go to forum.stopafib.org, and click on the big red button that says, “Sign Up”. Once you sign up by registering your email address, your preferred username, and a password, you’ll receive an email to confirm your interest in joining the forum. Click on the confirmation link in that email, and you are ready to go. You’ll be able to log into the forum, read the discussions, and participate. I hope that you are able to find others to connect with there that can give you advice, suggestions, and hope.
There are many resources on living with afib that you might find helpful.
For more information on afib and afib management, we have many resources available to you.
• News Stories on afib https://www.stopafib.org/afib-news-events/
• Patient Resources at MyAfibExperience.org
• StopAfib.org Library: https://www.stopafib.org/afib-resources/videos/
• Please consider attending our 2023 patient conference! Learn more at GetInRhythm.com.
Best of luck to you! We wish you sinus rhythm.