Information: So as some of you know... - Atrial Fibrillati...

Atrial Fibrillation Support

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22 Replies

So as some of you know, when I first came here I was a nervous wreck, the thought that at 40 my life was over with a dodgy ticker, I wallowed in self pity and almost destroyed my marriage with my constant depression of my new found health issue.

After doing some research and some fantastic information here I've become more calm about this condition..... However having watched dr guptas latest video titled one snake two heads I've gone backwards,

In it he says a very respected dr carried out a study that if you have AF with no other condition, then this is known as lone AF... And the study showed that these people were at no greater risk of stroke than the normal population....

However it showed people that suffer AF as a symptom of some other problem they're risk is significantly higher for stroke than the normal population... And that ablation is less successful

So I have found that I have sleep apnea, which puts me into the higher stroke/mortality group, this info has really knocked me back to almost where I was after first being diagnosed..... It's a real blow to me

22 Replies
BobD profile image
BobDVolunteer

Too Much information is never good and whilst I do sympathise you must get a grip there Juggsy. Nothing has actually changed in your life except that you saw a video where it was reported that one doctor had made some investigations which led him to a conclusion. You must not then draw your own conclusions. You are no more nor less at risk than you were before. I would dispute that lone AF has no increased stroke risk than general public in any case. That is what CHADSVASC is all about and no doubt your score is 0 unless you have high blood pressure, previous heart issues or diabetes. As you age this may well change . Sleep apnea is not even mentioned in CHADSVASC although it is known to be a contributory factor for some people in AF so how can it increase stroke risk?

Relax sir and move on. As I say. nothing has changed apart from what you drew from a video.

Finvola profile image
Finvola

Hidden Well done on getting control of the initial fears of AF - that's such a massive step forward. I found Dr Gupta's video very interesting but I didn't reach the same conclusion as you have - having said that, I have no medical training but merely my interpretation.

Sleep apnea, thyroid illness and binge drinking are examples of known causes of AF but they can all be treated and removed from the equation. Surely at that point they no longer influence overall health to the point where stroke/mortality are concerned. The exception might be if serious damage has been done to internal organs by long term binge drinking and alcohol abuse.

I took the mortality indicator to refer to the underlying serious co-morbidity which probably carried the mortality risk in the first place. Sleep apnea is a treatable condition and the stroke risk of AF for those of us who are 'elderly' is managed by anticoagulation.

So, that's my take on things - nothing is really cut and dried where statistics are concerned. Are you being treated for sleep apnea? Hopefully, others will have views on this too.

One of our regular posters has the most inspiring comment along the lines of 'you are at where you are at - go from there'. (Sorry PeterWh your way is better expressed). Don't worry about the maybes and mights - concentrate on how much you have achieved since diagnosis. Best wishes.

PeterWh profile image
PeterWh in reply to Finvola

Don't be sorry!!!

I remember telling Hidden that in his early days but here it is again.

You are at where you are at even though it's not where you thought you'd be. You can only move forward but you can only look back to learn how to move forwards!!!

PS you obviously didn't read my post on Friday (?) re highlighting a person's name!!! Anyway I still picked it up!!!

Yes I'm using cpap, however since using I've discovered I have a deviated septum, from constant rugby blows I expect, so I have to wear full mask and cannot use just nose one, as one nostril is completely blocked, I'm waiting for an spot to sort this and hoping this may make the apnea better,

Polski profile image
Polski

And as the sleep apnea is sorted, there is every chance that the AF may improve as well, so keep looking up. 'Lifestyle factors' can make a huge difference to AF, and this is similar. You may find looking at Dr John Day's website is interesting - under 'heartdisease' click on the very large rectangle labelled 'AF'.

rosyG profile image
rosyG

the good news is you can get help for sleep apnoea - some doctors insist that is done before they consider ablation etc as often your AF improves too

hope all goes well

Incidentally I liked some of his videos but he is not always 100 per cent-- in one posted on here he says the atria stop working in AF!! True that they don't work properly and fibrillate but they don't stop completely as one can see on heart recordings so don't take everything as set in stone- we are all different and our stroke risk varies with all sorts of factors

CDreamer profile image
CDreamer in reply to rosyG

He uses CPAP which is the treatment for sleep apnea.

rosyG profile image
rosyG in reply to CDreamer

am aware of that! Saw his later post after i had written but point still applies- as the treatment for that progresses his AF may well improve

CDreamer profile image
CDreamer in reply to rosyG

Just agreeing.....

Gracey23 profile image
Gracey23

I have sleep apnea as well and I have used a CPap for over four years. Maybe sleep apnea caused my AFib but I will never know for sure. I watched this video and what I determined from it is that uncontrolled sleep apnea can cause a higher risk of stroke. We are very lucky that we got a diagnosis before having a stroke, some aren't as lucky! keep a positive attitude my friend! Gracey

CDreamer profile image
CDreamer in reply to Gracey23

I have used it for over 2 years and very grateful as has improved my QOL.

Why on earth would having lone AF be no stroke risk, but having it as a side effect of another condition raise your stroke risk. Something wrong there and my EP would not agree as I have lone AF and my EP is very definitely pro anticoagulation for me.

Mazza23 profile image
Mazza23

I have SA ahi44 but with cpap have it down to 0 so hope this will help when I have cryoblation on 28th sept getting a bit nervous now it's getting close

Lorna058 profile image
Lorna058

I have sleep apnoea and was told by my EP that it added to my risk only if untreated.

CDreamer profile image
CDreamer

If you noticed on that thread I asked an important question, which unless I missed something wasn't answered as I found the video confusing.

All the information was based on one study - I think US? - and all statistics are based upon 'herd' statistics i.e:- no-one knows what will happen to any one individual. There are many, many factors in this and unless you have access to the original study, have a degree in statistics to assess whether this study is ethical, relevant and well run, I would be very wary of taking that as a truth for you.

There is a very interesting book Doctoring Data by Dr Macom Mckendrick - he reveals some very interesting insights into studies and how to judge the fantasy from the facts, I would recommend that book if you are going to look at studies - otherwise you will frighten yourself!

There is a lot of confusing and contradictory information out there so beware, recover your equilibrium - you were doing so well! Getting back to that homeostasis is the best thing you can do to support yourself.

If you take AC's, had your sleep apnea treated and have a good lifestyle re diet, exercise and alcohol & drugs, then you have done everything in your power to keep healthy and live a full and active life.

Best wishes CD

CDreamer profile image
CDreamer

Jugsy - this was my reply to the video which wasn't answered:-

Excellent video, thank you for posting, but I am unclear on a few points

- summarising my understanding - AF could be a stand alone disease OR a symptom of another condition. When considering ablation it seems as though - from the study spoken of - that ablation is more successful and suitable for those with Lone AF whereas if there are underlying conditions such as diabetes, high BP etc then ablation prognosis is less favourable and underlying conditions should be treated aggressively. Got that.

What I am not clear about is how or when the difference affects the stroke risk and whether or not anti-coagulants would be advised. Can anyone please enlighten me?

dedeottie profile image
dedeottie

I took this to mean that someone with A.F. plus other untreated problems such as high blood pressure, diabetes etc would have an overall increased stroke risk, not have an increased risk from A.F. alone. Dont know if I am right .

PeterWh profile image
PeterWh in reply to dedeottie

As I understand it there basically is the chadsvac guide which has boxes for various health issues, age and sex. However there is a growing belief that AF in itself causes increased risk. Also some leading EPs believe that once you have AF even if you have a successful ablation then your risk is increased, maybe not the five times but probably significantly.

When I was diagnosed with persistent AF both GP and my EP (in a leading team) said Anticoagulation was a definite yes even though all the tests had yet to be done and on the face of it I had no points because of age, sex, high BP. Had an ablation and as you know went back into AF less than 72 hours later.

Strongly advised to stay on anticoagulant although I would not have accepted stopping anyway because of what I have read and seen effects of strokes.

Now in the last 6 weeks developed high BP which came on very quickly when the problem had always been low BP. If I wasn't doing continuous monitoring I would never have picked this up for three or maybe more months. My GP's comment was she was concerned as diastolic was circa 100.

I think that this amplifies their concerns in people with AF and other heart issues. Although it doesn't apply to me because I am in persistent AF but I was told that there is often a concern because people with symptomatic or mildly symptomatic paroxysmal AF can have asymptomatic episodes especially at night and also have mildly symptomatic ones at night. There have been a number of people on here who have been surprised when they have had a "hotter" monitor for a couple of days or a week who have had far more episodes that they thought they had

Oldcarol profile image
Oldcarol

I have had sleep apnea since 1999. Get a sleep study and a cpap machine!! Wearing cpap is the same as breathing normally!! U do t snore! U do t hold your breath! Your brain is getting oxygenated!! Don't get depressed! U can be fixed!

Hang in there. There is hope, just talk to your doctors and get that sleep study. The study is to determine how much pressure it takes to keep your airway open. If u have sleep apnea and didn't know it, you will not believe how much a good nights sleep will improve ALL your problems.

Good health to ypu

Oldcarol profile image
Oldcarol

Sorry. Just answered before I read all the other blogs. Glad u got a cpap. U just need "tweeked". Full face mask sounds best till u get your septum fixed. Make sure u have a humidifier on it, it really helps.

Good luck.

traveler65 profile image
traveler65

Hi Juggsy 75 don't worry about Dr. Gupta. He spends alot of time in front of the camera not with patients or in an electrophysiology lab. He is not an Electrophysiologist. if you want better info pay $48 including tax to subscribe to a websight called uptodate.com

In addition, NOT instead of, use the websights of Strong Memorial Hospital in Rochester ny, usa ;

also web sight for Cleveland Clinic. Try to research info on the fact that meds deplete your body of magnesium, potassium, co q 10, trace minerals and most vitamins. Figure out how to replenish these.-- from foods and supplements. If you take any magnesium supplements do not use more than 600 mg. per day and take them within 3 hours of the heart meds. Look at magnesiums, taurate, glycinate and L-threonate. check out the nutritional components of foods at thescienceofeating.com and foodscience.com this information will probably help you. Don't get hysterical, hopeless, and depressed. You just need more information so you can make informed choices about how to proceed. Think KNOWLEDGE IS POWER!!!!

Get a good blood test panel. Test Vap test and NMR, for lipids and other related things;

free and total testosterone'; cortisol; free and total T4, free and total T3, reverse T3, T3 uptake , TSH, all antibodies for thyroid, thyroid hormone binding globuline (THBG); sex hormone binding globuline (SHBG);comprehensive metabolic panel, red blood cell (not serumj) magnesium (magnesium isn't tested in the metabolic panel);- healthy should be at the upper limit to imply your cells have enough; CoQ10; ferritin, homocysteine; dhea sulphate; IGF-1; IGF bp3. If you know what's going on you can decide better what to do.Also look into the K2 MK$ and MK7 issue. Ex. Dr. Bruce ames--"the triage theory of aging"--BY doing all this you may be able to deal effectively with the afib and avoid other issues which may also contribute to the afib and to health issues in general.

traveler65 profile image
traveler65

@juggsy75 one of the reasons you are so upset is that at 40 you tend to feel invincible. This afib takes you way out of your comfort zone. It's okay!!!! just get info and blood work to see what is going on as per previous response i sent. another useful website is biofoundations.org Your heart is okay--you just have afib. I have afib --on various tests echo cardio gram, ekg (now afib under controlby ablation and tiny dose of warfarin and sotalol), exercise etc. I am in excellent shape and my heart works fantastically well. I am also 68. I still feel somewhat invincible but with a little help. this help is diet, exercise, meditation, some rX and many supplements and the ablation. Your body is programmed to be alive for 120 years. The stem cells in your body are programmed to repair any damages or degradations for your entire life. This is only done however if the stem cells survive. How do you accomplish these? Make sure you maintain the mitochondria. (energy factories in you cells) as the mitochondria are sort of the guardians of the stem cells. . How do you do this? Read on biofoundatuiobns.org Another maintenance system of your brilliant body is MK's 1 through 13 of Vitamin K2. Read about this in the book. "The Triage Theory of Aging: by DR. Bruce Ames. Even though you are only 40 the need for MK-7 , Mk 4 etc still applies to you. You can use supplement and/or natto--natto is disgusting, but I usually put tiny pieces of it in a wok, and sautee with fennel, garlic, water chestnuts celery, and small chunks of meat and eat over rice. very good ,and all the Mk's 1 through 13. The MK's activate all the proteins in your various organs (arteries, bones heart , liver etc) whose job is to repair and maintain that body part.

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