August 30, 2015

Atrial Fibrillation Patient Discussion Forums

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:

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.

Comments

  1. JessicaLyn says:

    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

  2. Kate Smith says:

    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.

  3. Gostwriter says:

    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.

  4. 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

  5. Michael L.F. says:

    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.

  6. Fred Ross says:

    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

  7. 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).

  8. Helene4991 says:

    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?

  9. 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

  10. Carol Ann Coward says:

    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.

  11. 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 samir@estyle.biz 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: samir@estyle.biz
    Web: http://www.myfocusgroups.ca

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