A serious question about a CPAP related matter.

[AfibApnea]

Sleep apnea is often associated with atrial fibrillation. This means that it’s highly likely that some to many of you, like I, are also dealing with atrial fibrillation issues.

This is one of the most well spoken, well attended, and very (if I may use the term) professional forums I’ve attended. You would think that for a condition as serious as atrial fibrillation (its association with heartrate affecting drugs, blood thinners, and/or pacemakers) there would be a similarly constructed forum covering afib. When I do a search for such forums (google “afib support forum”) although I get “about 570,000 results” there are hardly any results that even seem to purport to be forums and when I go to them what I encounter is frankly speaking, a joke.

They seem glorified bloggy advertisements of some sort: They list some (fairly innocuous: "I found a Chinese herb..." "Does afib happen when you get a cold..." ) questions and whether/how often those questions have been answered. Click on the question and you get a page strewn with ads and not a place where people with serious questions about a serious condition can expect to encounter any sort of serious or intelligent discussion about their inquiries or their fears. What’s particularly sad is that the three or four supposed “forums” devoted to this topic, though they may appear different, all have the same sort of look and feel. (Another has questions posted in 16 point type…you can guess the rest…)

Does anyone know of a serious forum that discusses matters having to do with atrial fibrillation/pacemakers, etc.

Thanks

[icyura10]

Just a question.. have you asked your sleep dr or cardiologist that question? My sleep Dr. (a pulmonary specialist) gave me a list of web sites he wanted me to peruse ...

Have you looked at this site.. it's likely a good 1 stop shop for redirecting you to other sites like your looking for http://www.sleepreviewmag.com

Whatever you find I hope you share with the rest of us

[Arlene1963]

The UK based Healthunlocked AF forum is quite good, have you checked them out?
Although based in the UK, anyone can join.

https://healthunlocked.com/afassociation

[Julie]

I'm not sure that a-fib itself is something to build an ongoing forum around, why not start a blog or look for more general forums on arrythmia?

[Woody]

I believe I read that the supplement L-taurine may help this. You
may want to do your own search about this. I sort of find it funny
that a supplement used in a lot of "energy" drinks might have some
healthy properties .

[DreamStalker]

Sleep apnea is often associated with atrial fibrillation. This means that it’s highly likely that some to many of you, like I, are also dealing with atrial fibrillation issues.

This is one of the most well spoken, well attended, and very (if I may use the term) professional forums I’ve attended. You would think that for a condition as serious as atrial fibrillation (its association with heartrate affecting drugs, blood thinners, and/or pacemakers) there would be a similarly constructed forum covering afib. When I do a search for such forums (google “afib support forum”) although I get “about 570,000 results” there are hardly any results that even seem to purport to be forums and when I go to them what I encounter is frankly speaking, a joke.

They seem glorified bloggy advertisements of some sort: They list some (fairly innocuous: "I found a Chinese herb..." "Does afib happen when you get a cold..." ) questions and whether/how often those questions have been answered. Click on the question and you get a page strewn with ads and not a place where people with serious questions about a serious condition can expect to encounter any sort of serious or intelligent discussion about their inquiries or their fears. What’s particularly sad is that the three or four supposed “forums” devoted to this topic, though they may appear different, all have the same sort of look and feel. (Another has questions posted in 16 point type…you can guess the rest…)

Does anyone know of a serious forum that discusses matters having to do with atrial fibrillation/pacemakers, etc.

Thanks

AFib is a condition common to people who maintain high heart rates over extended periods of time. For example most marathon and endurance type athletes will end up getting AFib when they perform their activities over many years. What many OSA patients like us have in common with endurance athletes is that we too maintain high heart rates over extend periods of time while we sleep and our OSA is left untreated. We often share the same heart characteristics as life-long endurance athletes such as left ventricular hypertrophy (enlarged lower left chamber of the heart) and consequently leaky mitral valves (heart valve between left atrium and left ventrical). Over a long period of many years, the heart hypertrophy expands to the upper atrial chambers of the heart with the abnormal growth of cardiac muscle cells growing into and within the pulmonary veins and superior vena cava. Cardiac tissue cells are different than vascular tissue cells which are actually enothelial cells (endothelial cells are same as skin and gut lining cells). The rogue cardiac muscle cells growing into the veins and bring along with them innervation connections to the sinus atrial node which produces the rhythmic electrical pulses needed for proper heart rhythm.

Although it is much more complex than I understand, in effect these rogue cardiac tissue cells interfere with the sinoatrial node signals, causing the rhythm to go out of whack. The cure seems to be a procedure known as catheter ablation of the atria. Basically, the cardiac tissue of the atria is burnt with a radiofrequency electrode (like a mini microwave zapping tool). The purrpose is to isolate the electrical signals between the sinoatrial node and the rogue cardiac cells which have grown into the pulmonary veins and the vena cava by burning the atrial tissue to scar it and create an electrical insulation barrier(s). There are risks for complication(s) from this procedure but I think the risks of not having the procedure done are far more out weighed over the long run. Ablation is how I had my Afib treated, and yes there were unexpected complications that I had to deal with over a period of about a year. I would go through another year of those complications again though if I had to do it all over again.

Find yourself a qualified AND EXPERIENCED electrophysiologist who specializes in catheter ablation. You will have to fight hard because the insurance and health systems are organized against your best interest. It took me 5 years and firing several cardiologists and one idiot electrophysiologist just to finally get the system to approve the ablation procedure. Don't spend more than a couple of visits with a cardiologist who just wants to keep you on blood thinners, sucking the life and your money out of you until you die. If they tell you the only solution for you is blood thinners and/or a cocktail of antiarrhythmics and heart rate reduction medications (beta-blockers and Ca cahannel blockers) fire the imbiciles and not waste precious time. Especially avoid the amiodarone antiarrhythmic as it will damage your heart and possibly kill you. You will have to take the warfarin (rat poison) blood thinner as a required initiation to get through the system to the final destination of an ablation but the rat poison will kill you over the long term (and possibly even short term). Warfarin basically dissolves your blood vessels and capillaries causing necrosis (the death of thousands of your cells one cell at a time).

I would start by researching for a good ablation electrophysiologist in you area and find out which cardiologists he tends to work with the most ... then become a patient of one of those cardiologists and push hard for an ablation by the electrophysiologist, jumping through all the hoops required by the nazi insurance approval system. When jumping through the insurance hoops, the only treatment options I would decline is the pacemaker and the amiodarone (at least not take the amiodarone for more than a couple of months). The reason to avoid the pacemaker is because it will only delay the inevitable need for the ablation -- allowing damage of your heart to continue during the delay.

Good luck!

[BlackSpinner]

AFib is a condition common to people who maintain high heart rates over extended periods of time. For example most marathon and endurance type athletes will end up getting AFib when they perform their activities over many years. What many OSA patients like us have in common with endurance athletes is that we too maintain high heart rates over extend periods of time while we sleep and our OSA is left untreated. We often share the same heart characteristics as life-long endurance athletes such as left ventricular hypertrophy (enlarged lower left chamber of the heart) and consequently leaky mitral valves (heart valve between left atrium and left ventrical). Over a long period of many years, the heart hypertrophy expands to the upper atrial chambers of the heart with the abnormal growth of cardiac muscle cells growing into and within the pulmonary veins and superior vena cava. Cardiac tissue cells are different than vascular tissue cells which are actually enothelial cells (endothelial cells are same as skin and gut lining cells). The rogue cardiac muscle cells growing into the veins and bring along with them innervation connections to the sinus atrial node which produces the rhythmic electrical pulses needed for proper heart rhythm.

THIS is fascinating!
My other sister in Ontario has heart issues. Now really we assumed she shouldn't because she was an athlete from the time she was a teen. She became a military cop and kept up her training, especially the endurance and strength part, always ate well. At 58 she is still in excellent shape - menopause added a bit of weight but she not a poster child for heart issues. But she has them, some afib and some random strange stuff.

THanks

[DreamStalker]

AFib is a condition common to people who maintain high heart rates over extended periods of time. For example most marathon and endurance type athletes will end up getting AFib when they perform their activities over many years. What many OSA patients like us have in common with endurance athletes is that we too maintain high heart rates over extend periods of time while we sleep and our OSA is left untreated. We often share the same heart characteristics as life-long endurance athletes such as left ventricular hypertrophy (enlarged lower left chamber of the heart) and consequently leaky mitral valves (heart valve between left atrium and left ventrical). Over a long period of many years, the heart hypertrophy expands to the upper atrial chambers of the heart with the abnormal growth of cardiac muscle cells growing into and within the pulmonary veins and superior vena cava. Cardiac tissue cells are different than vascular tissue cells which are actually enothelial cells (endothelial cells are same as skin and gut lining cells). The rogue cardiac muscle cells growing into the veins and bring along with them innervation connections to the sinus atrial node which produces the rhythmic electrical pulses needed for proper heart rhythm.

THIS is fascinating!
My other sister in Ontario has heart issues. Now really we assumed she shouldn't because she was an athlete from the time she was a teen. She became a military cop and kept up her training, especially the endurance and strength part, always ate well. At 58 she is still in excellent shape - menopause added a bit of weight but she not a poster child for heart issues. But she has them, some afib and some random strange stuff.

THanks

Strength training is not an issue as it involves very much shorter periods of increased heart rate .... only the long-term sustained endurance type training leads to Afib.

[BlackSpinner]

Strength training is not an issue as it involves very much shorter periods of increased heart rate .... only the long-term sustained endurance type training leads to Afib.

Running miles with a full pack and weapons weekly would do that nicely.

[AfibApnea]

Thanks for your replies.

I'm not sure that a-fib itself is something to build an ongoing forum around

Afib is as much a forum worthy matter as sleep apnea, maybe more so. Besides the fact sleep apnea and afib are often coincidental, topics relating to Afib worth gnashing one’s teeth over or just having questions/answers or productive discussions include: methods of treatment (ablation, drugs, etc.); Ablation (what is it and why is it most appropriate for low level types of arrhythmia e.g., "flutter"); afib symptoms (symptomatic or asymptomatic); progress (usually only gets worse); controlling the heartbeat highs and heartbeat lows; drugs employed in dealing with afib (there are many of them—a lot fairly dangerous); pacemaker intervention; available pacemakers; types of pacemakers; afib (drug) controls and blood pressure issues; the dangers of having an MRI with a pacemaker; whether there is any way, outside of a hospital environment, to actually accurately ascertain one’s heartrate (there doesn’t seem to be); whether a Fitbit, Kardia, or related device can provide any useful information about one's heartrate; how to know if a pacemaker is working right; the tendency of cardiologists to be seduced by the (pacemaker) technology; pacemaker reporting from home (how it’s similar to the good-ol’ modem days…), etc.

The UK based Healthunlocked AF forum is quite good, have you checked them out?
Although based in the UK, anyone can join.

Although initially I'm put off by its popularity-contest sort of interface, it would be unfair of me to disown it on just this basis. So I thank you Arlene1963 for the suggestion and (since it seems the only alternative) will give it a fair chance. I'll get back to the forum after I've tried it long enough to form an opinion.

Thanks again

[bettiola]

I also was diagnosed with afib two years ago and the cardiologist said I should be tested for OSA whuch is how I disovered that I have severe apnea. In my researching afib online I came across a terrific blog by an electrocardiologist who himself has afib. His writings are the most helpful thing relating to afib that I've found online. Here's a link:
http://www.drjohnm.org/atrial-fib/
Speaking of ablations, he does do them but does not feel they are a panacea or appropriate for everyone. I agree that afib is every bit as worthy of a serious forum as OSA. Speaking from experience, it's a scary diagnosis and the more information you can get the better.

[Arlene1963]

Last year I went looking for an Afib forum when my nurse practioner misdiagnosed an episode of atrial tachycardia as atrial fibrillation (PAF), and that's how I came across the UK based Af forum I linked to.

I was terribly upset about the whole thing (undiagnosed OSA was the biggest culprit I now realise) and the posters there were knowledgeable and compassionate. One of the posters actually figured out that my NP had made the wrong diagnosis.

Anyway, I agree that the layout is not the best. Just hate that "popular" button and what is with the tags? I had some odd tags appended to my posts and had to remove them.

For all that though, it was the best Afib forum I was able to find.

[tbone421998]

I was just diagnosed with AFib last week. Here's a couple of sites with forums that look interesting. Haven't had a lot of time yet to poke around. http://www.myafibexperience.org and http://www.StopAfib.org.

[AfibApnea]

Sorry for apparently taking so long to get back to y'all.

I agree that the layout is not the best. Just hate that "popular" button and what is with the tags? I had some odd tags appended to my posts and had to remove them

Arlene1963
Per your suggestion I try the forum, I have been on the healthunlocked.com/afassociation forum posting a 5-part “Heart Rate Part x…” set of threads investigating ways to monitor heart rate for people with afib.
Although I have yet to find a way to secure a quality heart rate trend (my Fitbit isn’t good enough according to my cardiologist) my posts have been very productive and solicited helpful responses.
Before trying this forum I was skeptical regarding the forum’s layout. However, although your “place in line” can be a bit confusing if you’re replying to multiple posts within the thread, the layout is very serviceable. More important, the people seem very knowledgeable and willing to talk.
THANKS AGAIN FOR SUGGESTING THAT FORUM.