Experimenting on myself, don't all tr... - Atrial Fibrillati...

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Experimenting on myself, don't all try this at home

61 Replies

This is long but I wanted to share this in the hope this inspires someone, some may think I'm crazy but I just had to find out. 

I have HOCM, its quite mild and has been so for years. It's hereditary. Im in my 50's . Was sort of bullied by cardiologists to take Beta blockers and have been on a low dose for 20 years. I don't get any side effects from them but have just been taking them anyway because I was told to. 

I am slim, eat very well, I try to only eat organic too, don't smoke, don't drink, play sports once a week & recently cut down on eating meat, that's in the last 20 years. 

I was a party animal from my teens up to age of 30's and I ate everything! 

I have 2 small children.

 I had my first Afib 3 years ago due to dehydration and coffee, I had another a year later because I ate some flavoured peanuts, Im pretty sure it was the MSG. I think I know my triggers.

Some Cardiologists were trying to put me on blood thinners, up my beta dose, pace maker, ablations etc. The usual after Afib but I refused, I wanted to change what I eat even more and look for natural alternatives to what the cardiologists were suggesting.

 I haven't had one for over a year. 

Considering all these I decided I want to get off my beta blockers. I went opposite of what is expected. I don't know why but I didn't like depending on this thing that I had to take everyday, I would panic if I forgot to take it. I didn't need that in my life.I was also questioning what side effects it was doing to my body I was not aware of. 

Anyway, working very closely with a health practitioner I decided to drop down my dose of BB, I went from taking it every other day. This was Jan this year. The days I wasn't taking the BB I took Nattokinase in the morning and again in the evening. I also took CoQ10, Magnesium and organic garlic or sometimes tumeric supplements.

I noticed some changes in the one month, supsrisingly the changes were LESS palpitations. I also monitored my blood pressure and it was always average, never too high. After a month I started taking a quarter BB every other day. but still taking Nattokinase and the others.

No Afib for a year and I wanted to see if it was affecting me so I requested a 5 day holter and an ECG.

In a nutshell, my new and preferred cardiologist to his surprise said absolutely NOTHING changed from my 5 day holter and ECG from 1.5 years ago. If anything there were slight improvements.He didn't know I was doing all this and when I told him he didn't know what to say. He spoke highly of Nattokinase and didn't tell me to stop doing what I was doing.

He is one of those cardiologist who doesn't try to push you to take anything that you may not need just to cover himself. 

He said carry on what you're doing and I'll see you in a year. 

Maybe because it was part psychological, maybe my will power, some clam, meditation, good food can also help our hearts?

It just made me wonder why have I been taking this pill for 20 years?

Maybe it's early days and its only been 4 months and will carry on with a quarter BB every other day for a while but I am more conscious of how I treat my heart and what I put into my body which I think is more important on what medication I need to take at a certain time.

I am not cheering myself yet and I am not gloating in any way, I am still very humble & will probably have to be back on them in my 60's 70s... But for now I am enjoying being a little less depednant from Pharma medication. 

To be fair I now I have to take more pills but at least I know these pills are free from chemicals and benefits other parts of the body.

I am just sharing this not as advice just as a matter of fact.

God bless everyone, love to all.

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61 Replies
jeanjeannie50 profile image
jeanjeannie50

Hi Tony

I tried a similar thing a few times. For two summers running I stopped taking my AF medication (kept taking my Warfarin), but stopped beta blocker and Flecainide. I would be fine in the summer from about April onwards, but then each October back would come the AF. I tried it a third year and my heart protested wildly, so I gave up and haven't tried it again since. I have to admit I do sometimes think about trying again.

I often wonder if our medication slows down other organs in our body as well as our hearts. Hate taking pills, but would never ever stop anticoagulants after working in a nursing home and seeing the results of strokes - no I'd rather be dead than fed through my stomach, doubly incontinent, unable to move or speak and look out on the world with bewildered eyes.

Good luck with your experiment.

Jean

Peacefulneedshelp profile image
Peacefulneedshelp in reply tojeanjeannie50

This is my second go around with Beta Blockers. Years ago while in my late 40s early 50s was taking them. Every time I would see my GP she would ask me things like are you moving your bowels, how are you feeling etc. I asked her why do you keep asking me that? She said because the medication slows everything down not just your heart. So that is why the weight gain and other issues that seemed minor. So yes, the med created issues for the whole body. Fast forward to this time around on them and I can tell they are zapping my energy and my blood sugar drops at the craziest of times. As that is one of the side effects of Nebivolol, so I read.

jeanjeannie50 profile image
jeanjeannie50 in reply toPeacefulneedshelp

That's interesting to hear what you were told, as I've never actually known of anyone on this forum who has received the same advice. Sounds like you had a good GP.

Peacefulneedshelp profile image
Peacefulneedshelp in reply tojeanjeannie50

Unfortunately that GP quit medicine to go into research. All the good drs seem to give up and do something else. I had another good dr and he went totally private. I’m in the US and this doctor stopped taking any insurance and charged a yearly fee no matter how many times you saw him or didn’t see him. I didn’t go that route.

With the debacle of the last few years many more of our doctors were vilified and driven underground also. Many of our agencies have been captivated, as an example the FDA has on it board, members that are also big Ag and big Pharma. So how can we trust their guidance? Then nothing is made here anymore and most of it is made in China. What QC does that assure us? No wonder we all have Afib.

jeanjeannie50 profile image
jeanjeannie50 in reply toPeacefulneedshelp

My sister has lived most of her life in Texas and she doesn't like the way things are changing over there at the moment. She's certainly not happy about drugs being made in China. Our drugs are still made here in the UK (well the ones I take are).

All I can say is I'm glad I lived when I did, as things certainly don't look too good up ahead. It's strange how so many countries appear to be relying on others to make products for them. I'm of the belief that every country, wherever possible, should be self sufficient. You would think that with the US as big as it is, it would have no problem being self sufficient. I agree with you it's difficult to trust our leaders these days!

Jean

Tomred profile image
Tomred in reply toPeacefulneedshelp

I think if bisop slows the heart , it would probably slow everything , when i increase my dose for example my partner says i talk very slow.

in reply toTomred

Tom, not trying to be funny but it also reduces some action in the bedroom too. That's one of the side effects for men.

Tomred profile image
Tomred in reply to

so thats whats wrong, lol

Jalia profile image
Jalia

Good on you ! I hope your success continues.

SeanJax profile image
SeanJax

beta blocker is your mainstream treatment for your HOCM. If I was you I would keep the same initial dosage. AnneFromOz gave you the perfect medical explanation why you need beta blockers. your Afib most likely will come back regardless of your experiment. It was not a bully by putting your under the right treatment. It is your life, your heart and your choice. One word your lifestyle changes are very good for everything but it is not all of the treatment. I saw postings about pros and cons against statins, beta blockers, anticoagulants. Why force or convince people to take what they don’t want to take? It is their brain, their heart and their life. When they got a stroke because lack of anticoagulants it is their brain. Each decision has its own consequences. When it happens live with it.

Thanks Anne, I have come to the conclusion that I will not be totally ceasing BB but I found a good middle ground between taking it every other day rather than everyday and taking the other supplements. Natto and C0Q10 are also meant to lessen blood pressure and ease the heart too. The ECG did not show any thickening of the heart muscle in those 4 months I reduced the BB.

Peacefulneedshelp profile image
Peacefulneedshelp in reply to

Have you consulted with any other doctors for a second opinion on your diagnosis? I have had 3 diagnosis and they come out different. Prolapsed valve then years later they didn’t see a prolapsed valve, then fast forward I now again have a prolapsed valve. So I really don’t know what to believe.

I did like you I weaned myself off the BBs and lived very normally for years until I hit my 70s then the Afib started to increase.

I too can’t eat MSG and I want to inject that wheat is almost the same as chemical make up as MSG one is left handed one is right handed and the body can’t tell the difference.

Once I gave up wheat I was a whole lot better.

I also take the Nattokinase and showed my cardiologist the info on it. He was indifferent but didn’t say not to take it.

As was already mentioned you have a little different issue going on than just Afib. But keep getting your checks up.

Windlepoons profile image
Windlepoons

Well done for your critical thinking approach and willingness not to accept everything you are told blindly. I too prefer to try natural supplements and less medication. 🤗

Yes you are right, a true test would be another ECG and perhaps an MRI in another 8 months time. So 1 year. But remember BB as a medication is not the only thing under this sun that reduces the force of the heart, natural supplements, calm, good food, eliminating fear... its also a way of life. Also no one really knows what the hidden side effects of BB are. I mean if you look at the leaflets its a whole page of side effects.

in reply to

Also, remember this article?

newscientist.com/article/mg...

secondtry profile image
secondtry

Firstly Tony well done! I think your actions are definitely not crazy and I have adopted a broadly similar lifestyle approach myself including most of those supplements. I also take a Krill oil capsule once a day.

I would say the compromise of accepting some drug(s) maybe at a reduced dose than that prescribed is the ideal path for the majority given the will - no mandates here!! I have had to accept Flecainide for 10 yrs at the same level as I have vagally mediated PAF (in remission) and know that my mind can and has triggered more than one episode; despite benefitting from an increased focus on spiritual matters being for me God & Nature. I still aim for a reduced daily dose when the time is right, as too busy at present and hospitals are not in a good place.

I also don't take anticoags and am interested in your mention of Nattokinaise. May I ask for more details of your experience eg source, how much, side effects, time of day taken. I suspect this will be the next supplement I take.

Hope things continue to improve and keep

in reply tosecondtry

Hi, I am really doing what my body tells me to but I take advice from holistic doctors, commercial doctors, health practitioners and then make up my own mind. It's a bit like how I process the news these days. I never rely on just one source. I did my homework on Nattokinase and even my cardiologist acknowledged it, he's been reading a lot about it and for me that's a good cardiologist. He didn't dismiss it as hocus focus. After all it has been with us for thousands of years! So make sure you research a good brand where you are living, try to get non GMO ones, so not commercial ones at boots probably. When Im on my BB I only take Natto in the evening and always on an empty stomach at least 30 mins before eating, better 1 hour so it really absorbs in your system. When I am not on BB then I take one in the morning as soon as I wake up, while I shower and get ready of work it would have been an hour then I have my breakfast and one in the evenings before dinner. Again 1 hour. I have had no side effects at all but the dose is still low. Have a look at the benefits here.

ncbi.nlm.nih.gov/pmc/articl...

Please do your own research too and good luck with it. To be honest after the last 3 years I lost faith in big Pharma.

rubina786 profile image
rubina786 in reply to

Thank you for sharing!!!God Bless, yes the "do no harm" does not apply to most meds! Lol.

I have CoQ10, Magnesium sometimes, and occasionally Rutin.

Clove of garlic every night!

Ajwa Date Seed powder

Ajwa Dates

Nigella sativa with a bit of > 520 MGO Manuka Honey

All help keep BP down.

Heart appears to be getting stronger.

Have wanted to try Natto for months but land up confused, too many options! Lol.

Any that you could recommend, organic vegetarian to research and try at my own risk ofcourse!

Thanks

Rubina

in reply torubina786

Hi Rubina you made me smile so thank you, I love that you also consume dates, im constantly munching on dates, dates and bananas are natural beta blockers by the way. Honey of course is amazing but as long as its RAW and organic. I heard in the US they're now introducing vaccine to the bees! No more US honey that's for sure. Article below. I don't know much about Rutin but thanks of sharing will also look up. There are so many Natto brands, I just make sure its non GMO but heard LABO Nutrition is a really good brand. I use one from a company called Medford.

theguardian.com/environment...

rubina786 profile image
rubina786 in reply to

Wow, their insanity! Whatever next, well actually, Gates insect farms might be a clue, what with water, food, air contamination, Ai, 5g radiation, graphine, nano, fake meat, smart cities, we don’t really stand a chance! Then theres Havana Syndrome for all if nothing else works! Often think is time to move out a remote cave with my cat :)Btw the dates call Ajwa (named after the, city are special for healing).

Thanks for the pointers...the struggle continues. May the Force be with us :)

Loads of love and blessings. Xx

BlueINR profile image
BlueINR

What is HOCM?

in reply toBlueINR

The O stands for obstructive.

Cassag profile image
Cassag

Did your doctor accept that nattokinase is a sufficient blood thinner

I know they use it in Japan.

in reply toCassag

I showed him this and he has read a lot about it but with most natural supplements not enough research goes into it even though it has been used for over a 1000 years originating from Japan

ncbi.nlm.nih.gov/pmc/articl...

Ppiman profile image
Ppiman

It was a lovely letter to read and more power to you. I think the lifestyle you lead and maintain could be an exemplar to us all, and that the meditation you are starting on will likely add even more benefits over time.

Having spent long in the "Pharma" industry, I don't have quite the cynicism the word implies towards it, and, further, in Europe at least, my experience is that cardiologists are far from being in thrall to the industry.

With regard to "health" supplements, well, I would say that chemicals are chemicals whether we buy them from a health shop or have them prescribed: it's the same to the body. Whether it is "taurate" or "sulphate" or whatever: the body doesn't know the difference - only the mind. The prescribed chemicals will have a standardised formula, a known safety and activity profile, and have gone through extensive and expensive analysis and QC from raw materials to final product for every batch made. The chemicals bought from a shop, won't, and are much more likely to do very little.

The problem with the heart is that medical scientists don't yet know what causes the changes that occur, but they do know that much of it occurs slowly, and as a kind of ageing or degeneration, over time (hence the idea that "AF begets AF", for example). Whether one diet or set of social habits over another can slow these changes, seems to be so, but which diet isn't really known. You seem to be onto something and to be doing very much the right thing. In terms of drugs, so far as I have been told, beta blockers along with some antihypertensives have been shown to extend life and reduce long-term cardiovascular issues. I take losartan not to reduce my blood pressure, which is normal, but for its long-term cardioprotective effects as I have LBBB.

Keep up the good work and let us know how things go.

Steve

in reply toPpiman

Thank you Steve for an equally lovely reply. I agree with you on so many things, even health shops you need to be wary of, not all health supplements are equal. I wouldn't touch any of the vitamins in Boots for example. I think like modern medicine you also need to be wary what you put into your body. What happened in the last 3 years in terms of following the science was a disaster and it made lots of people wary and a little skeptical of modern medicine and the big Pharma. In terms of BB, I understand its been around for years but it's also not bullet proof, no one can really predict if it prolongs lives because when they do experiments they don't look at lifestyle of that person, they only look at what medication they are taking. What would be interesting and practically impossible is if you do research on 2 sets of people with heart disease who take beta blockers but one set eats junk, worry about everything, have anger issues, have stressful jobs Vs People who don't have stressful jobs, eat well, maybe even meditate too. Even this article I will take with a pinch of salt

newscientist.com/article/mg...

Have a lovely week Steve and I will keep everyone posted.

secondtry profile image
secondtry in reply to

I think it is important that this Forum helps point users to the more trusted supplement suppliers as there is likely to be a significant difference in outcomes. In the UK I use Lambert Healthcare for most requirements.

Just a quick comment on 'what's happened in the last 3 years'. I am in shock not so much on Big Pharma (as their remit has always been to maximise profit) but on how governments and mainstream media have been totally captured and cannot be trusted to protect us or expose important issues. The knock-on effect is likely to be more civil unrest as the truth slowly drips out.

Ppiman profile image
Ppiman in reply to

The medical statisticians who carried out those long term studies on drugs such as beta blockers and anti hypertensives will have tried hard try to account for all confounding factors so their results should be a good guide to what to expect. It seems that both drugs do extend life usefully. I’m taking my daily losartan in the hope of that anyway! 😉

I’ll look at the link - and if you have any more like that I’d be keen to see them. Thanks!

Steve

in reply toPpiman

Steve, BB was invented in the late 60's so basically lets say its been in the market since the early 70s. That's only 50 years. I alone have been taking it for 20 years. So far its been ok but we also really don't know what other side effects are there that we have no idea about. I would give it another 100 years to really determine if it causes more damage than good or vice versa.

Auriculaire profile image
Auriculaire in reply to

Probably not ot trialled in women then.

Auriculaire profile image
Auriculaire in reply toPpiman

Any drug that was trialled before the 90s was probably not tested on women or even female lab animals so there is one major confounding factor concerning half the population not taken into account. Even today there is no sex differenciation in the reporting of side effects in clinical trials. Maybe these drugs don't extend life as well for women. Is there anything in the literature about that?

Ppiman profile image
Ppiman in reply toAuriculaire

There seem to be plenty of trials in which gender has been accounted for, but, as you say, many where the cohort was mostly men. I would expect most cardiac drugs have been extensively studied well beyond their launch date.

bmj.com/content/353/bmj.i1855

Steve

Auriculaire profile image
Auriculaire in reply toPpiman

This meta analysis points out that women only make up 24% of the participants in the trials reviewed and that "There is a clear need to improve the enrolment of women to provide realistic expectations of their risk and benefit from treatment." They point out that in a recent RCT of angiotensin-neprilysin inhibition versus enalapril in HFrEF, women accounted for only 22% of the patients recruited . That was in 2014 . So although an improvement on the pre 90s when women were hardly ever included in RCTs apart for interventions meant only for women - hormonal contraception, HRT etc- still not good enough. Perhaps things have improved today but until women make up 50% in all RCTs for interventions for both sexes it's not satisfactory.

Ppiman profile image
Ppiman in reply toAuriculaire

It is an odd thing that need to be corrected, and likely now is, You know, it’s interesting but it might also reflect some kind of trial recruitment issue. When I took part in some clinical trial studies at a company I worked for, by far the most doing them were men and yet all employees had been invited, with most being female.

Steve

beach_bum profile image
beach_bum

Oh I hear ya Anne. Social media has turned everyone into “experts”. Now *sigh* the new scourge that is emerging is ChatGPT, an AI generator that a 12 year old can use…and looks like a Harvard Medical grad/scientist/author in minutes.

Be careful out there kids!

Dee5165 profile image
Dee5165

Tony, I love posts like yours and have also experimented with supplements. I have been successfully in NSR for almost 2 years. The only other supplement that I added was Hawthorn Berry with the COQ10 and Magnesium Taurate and Glycinate. But thank you for this information on Nattokinase. I will do more research on it if needed. Good luck!

Nugger profile image
Nugger

Similar story hear, after being cardioverted for the 3rd time in 2018 for persistant afib,i should be taking flecanide,bisop, & eliquis but stopped taking them a few months after cv,i too take nattokinase,i have had 2 episodes of afib 2 weeks apart 18 months ago & cardioverted myself using max flec & bisop,not had a problem since, most doctors I've come across have little knowledge & one even called my kardia a toy but that was back in 2018 & don't get me going about prostate screening or should i say the lack of, you've got to be your own advocate or the doctors will have you on all kinds of pills especially statins 😆

secondtry profile image
secondtry in reply toNugger

Are you happy to share your Nattokinaise dose level and any effects, side or otherwise? I am keen to know an entry level dose for someone looking for just the anticoagulant effect as not on DOACs.

in reply tosecondtry

Hi I shared it with Tom at the bottom of this thread. Hope that helps? But please use at your own discretion. The moderators on this group think we are all children.

secondtry profile image
secondtry in reply to

Thanks that's a good start, will do some more research.

in reply tosecondtry

Also a member here brought Lumbrokinase to my attention which I did not know about. Look it up. Amazing.

secondtry profile image
secondtry in reply to

Will do but a bit nervous in my case that possible 'weaknesses' in my stomach (didn't like aspirin) & propensity to get blood shot eyes might become an issue even with low dose Natto.

Nugger profile image
Nugger in reply tosecondtry

2000fu every morning

Tomred profile image
Tomred

Hi Tony, what dose of natto do you take , also maybe im reading it wrong but you say you cut back in jan this year and then say ,no afib for a year and later say its only been 4 months, could you clarify please, also what dose of bisop were you on, and why only take natto every other day ,are you on any other anticoagulant. I hope all continues well for you.

in reply toTomred

Hi Tom, so since my 2nd Afib which was in April 2022 I decided to revisit my whole diet, I always ate healthy anyway but cut down on gluten, meat, no more Thai food with MSG, quit coffee and replaced with green tea, drank lots more water with magnesium and then I started with C0Q10 and the garlic and tumeric etc. I did that up until this year January with no Afib, which was 10 months. So changed diet from April 2022 to January 2023. I dropped down my BB and replaced with Natto from 3rd of January 2023. So been taking Natto since then, 3.5 months. I take a 50mg Natto tablet in the morning and evening when Im off BB. Otherwise just the evening as I take my BB in the mornings. I am not on any other medication other than the BB. And I usually take 2.5mg of my Beta Blocker, been taking that amount for years but now I take half so 1.25mg every other day. So all together I haven't had Afib for one year and 3.5 months of that has been on Natto. Natto doesn't stop Afib but I strongly believe diet does. I could be wrong and I could get it tomorrow. God forbid! Hope that answers everything?

Tomred profile image
Tomred in reply to

thanks Tony.

Tomred profile image
Tomred in reply to

Hi tony, been going over your reply, i have afib approx 30-35 years, those initial years it went from the start which lasted 1 sec ,it may have been 2-3 years before i had another bout of maybe 3-4 seconds and then again over next couple years 2-3 minute bouts etc etc over the years, now i am at the weekly stage of 24-36 hours, i take bisoprolol and multaq which does quieten it somewhat, ep says no anticoagulant until im 65, im 63 soon and my chads score is 0, i never wanted to take meds , but if i was given anticoagulants in the morning i would take them, in the meantime i take nattokinase 6000fu per day in the hope that it works, my point been is, it seems you only have been taking afib recently 2022 , and your first bout i presume wasnt that long before, so its early days for you Tony , I hope your success continues , truly, but i can certainly vouch for the old adage that afib begets afib, just be careful Tony. good luck.

Auriculaire profile image
Auriculaire in reply toTomred

I had a TIA while taking nattokinase but at a much lower dose than 6000fu. I was 67 and that put my score up to 3 so doc prescribed Apixaban . The TIA was very subtle and nothing showed on the cat scan. It was 6 months after the previous afib attack. At the time I had started taking CBD oil and I wondered if that might have provoked it as I took a bigger dose that day.

Tomred profile image
Tomred in reply toAuriculaire

Yes Auriculaire , I asked you a week or 2 back about your dosage of natto , i didnt realize you had tia 6 months after afib attack, so , it wasnt during an attack that you had Tia, hope you recovered from that.

Auriculaire profile image
Auriculaire in reply toTomred

I think I was only taking 2000fu a day. It might have been less but it's 4 years ago. I recovered very quickly. In fact if it hadn't been for not being able to write except in squiggles I'm not sure I'd have believed I'd had one.

reinaway profile image
reinaway

Could a pacemaker cause thickening of the heart wall then by not allowing it to beat how it once did?

raymelb profile image
raymelb

Hi Tony, good luck with what you're doing and I hope it works well for you. I read one of Dr Mercola's emails the other day, when he was talking about Lumbrokinase. Have you heard of it?Lumbrokinase is supposedly 30 times more powerful than Nattokinase and 300 times more powerful than Serrapeptase, and Lumbrokinase alone has a balancing mechanism that promotes both fibrinolysis and fibrinogenesis, which means it can both break down or build up fibrin, depending upon your body's needs.

So just to let you know this same post has been stopped in the British Heart Foundation forum so same might happen here. This is the reply I got from the moderators which is confusing as I never recommended that anyone changes their medication. I was giving my personal experience.

Hi everyone!This is just a reminder that content on HealthUnlocked does not replace the relationship between you and your doctor. Please avoid making any changes to your medication or advising others to do the same, without speaking to a health professional first. Comments to this post have been turned off to prevent any further breaking of the communities terms of use.Many thanks,HU_Moderator

Dee5165 profile image
Dee5165 in reply to

I received the same notice when I began taking supplements in lieu of meds. I no longer post on this site, I just respond occasionally. This administration is doing an injustice to those that don't trust the Medical Community. We are justified in our feelings after all the negative adverse effects of vaccines were not only hidden from the public, but information was censored as well. I believe to do what's best for your own body and do your research. By the way, it is important to know where the research is coming from! Follow the money.

Tomred profile image
Tomred in reply toDee5165

hi Dee, ive been trying to find you after a post of yours regarding a couple of months back about high dose supplementation could you private message me please.

Qzwxecrv profile image
Qzwxecrv

The gains always need to be weighed against the losses when taking a medication. And not everyone reacts to a medication in the same way. With that being said my in laws had been on beta blockers for over forty years and they both lived well into their nineties.

KootenayTrails profile image
KootenayTrails

I have HCM rather than HOCM (so hypertrophic cardiomyopathy, but not obstructive). BB also commonly prescribed. I have never taken them though due to Canadian Cardiologist’s advice not to (he said not to because of my active lifestyle, clean diet, low RHR, suspected overactive vagal response, no high BP or other cardiovascular issues). Diagnosed at 41 yrs old after fainting / abnormal ECG. In my case, zero issues until first AF in February this year (64 yrs old). Retesting showed no increased heart muscle thickening in 23 years. Cardiologists advice is still to not take BB, due to my continued low RHR and vagal-related (prone to fainting) AF episodes, active lifestyle etc. They put me on Apixiban and amiodarone temporarily to control daily intense paroxysmal AF episodes. I’m going for my first ablation on May 31st. So will see what the future holds but my understanding is that not everyone needs BB, even with HCM, especially younger than 70th old.

in reply toKootenayTrails

Thanks for sharing this, I wish I read it 20 years ago or I wish I saw your cardiologist! I had a very paranoid cardiologist so it really is case by case. May I ask 2 questions, what is your gradient? LVOT. How thick was it and what numbers did it stay in for 23 years. Also did you only have 1 Afib session in Feb? Just wondering why you are having an ablation unless you have been having Afib all the time? You seem to be fit and eat healthy and wondered if you thought about trying to control t without an ablation? Thank you in advance.

KootenayTrails profile image
KootenayTrails

I saw several Cardiologists and EPs and yes their personalities and our rapport with them, does seem to affect their decisions, doesn’t it? The Cardiac Center I was at did initially put me on statins (despite perfect lipid profile) and Ramipril (despite no history of hypertension) as standard protocol “to protect the heart”. Both bothered me, and was taken off within 2 weeks. I guess every case is a little different, especially with AF. My LVOT gradient is 6 (<30 is non-obstructive I believe). Thickness 17 and only at LV apex, so my specific diagnosis is “Apical HCM”. Technology less advanced 23 yrs ago, but they said biopsy showed same thickening as now, and Stress Echo Effusion Rate (blood flow) same at 70-75% during exercise. Since February I have had ~ 50 AF episodes, almost daily for about a month. Prior to amiodarone, the episodes were intense (fainting or almost fainting, HR varying between 30 and 200) so Emerg visits/cardioversions needed). Was a nightmare! Even on amiodarone, when I’m in AF, I’m unable to do anything but sit in reclined chair for the duration (1/2hr to 7hrs this last month). QOL is low, as AF triggers seem to be exercise, large meals, caffeine, one glass of beer (stopped all three in February), stress and sleeping flat! Basically EP has said that if I don’t have the ablation, I’m headed towards persistent AF which makes sense to me. Also my understanding is that ablations done early in diagnosis tend to be more effective. There seem to be many in this forum though, who have infrequent and almost asymptomatic AF episodes, so hopefully that will be you!

ZodiacLeo profile image
ZodiacLeo

Hi!

I have persistant afib

I'm on 60 mg lixiana one time a day (or night if you want). I have ordered Nattokinase because I suspect that all the anticoagulants will give you problems in the long run making the arteries calcified. Since Nattokinase also makes blood more anticoagulant I guess taking Edoxaban (Lixiana) at the same time, could be dangerous even though Nattokinase apparently doesn't "thin" the blood as much as Edoxaban.

So, my thought is to take HALF the dosage of Edoxaban (Lixiana) 30 mg at night and take the Nattokinase at daytime, approx 12 hours after the 30 mg of Edoxaban. I guess in theory that would be safe...? 🧐I don't know how many mg or FU of Nattokinase you have to take to make it dissolve plaque and clots, but I've heard around 4000-5000 FU a day should do the work. Anyone who knows?

Nattokinase also start dissolving clots pretty fast after only 4-6 hours, according to different articles, not me. That gives me a window of 6-8 hours for the Nattokinase to work and be absorbed (?) by the body before taking my 30 mg's Edoxaban at nighttime.. Anyone who's done anything similar? Only asking because the doctors doesn't know any of this and they are biased and indoctrinated by the compendium made by big pharma.

IF one have blood clots you don't know about and takes nattokinase, can that clot in theory dislodge and travel to the brain, heart or lungs or will it shrink so it doesn't get stuck in the big arteries only in the smaller ones?

As you may see I been doing a lot of thinking here😂 and I would be very grateful if anyone has some answers👍

Have a great day!

NLGA profile image
NLGA

that’s great information

I have been in AF for 2 years I am on flecainde and BB

I spent 4 days in AF last week pulse 90-132 another example 15 hours out of 24 when I had my monitor on recently pulse hit 185 I get very breathless I actually started to think I have AF and long Covid

Anyway and this sounds potty o have been on nattokinaise 3 days

I stopped being breathless 2 hours after my first tablet I thought this must be on my head that I want it to work

3 days on no real breathing issue and when you consider walking around a supermarket was hard for me and I havent had AF or a increased pulse

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