Self medicating : In the last 5 years I’ve... - AF Association

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Self medicating

Nugger
Nugger

In the last 5 years I’ve had 3 bouts of persistent AF, & had to be cardioverted each time,the last being 2 years ago, I’m supposed to be taking bisoprolol & flecanide but stopped taking flecanide over a year back & bisoprolol 3 months ago, feel so much better after stopping bisoprolol.

Just wondered, how many others self medicate ?

87 Replies
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I would like to know too how many people self medicate. I know one person for sure who posts on here but can't remember the name. This medicine is brutal and I'm one who is ultra sensitive to meds. Wish the Drs would take this junk so they can feel it for themselves.

What do people do who just cannot take the meds because they may be allergic to the blood thinners and/or beta blockers? What do they do to manage Afib (without any of the surgeries) ?

Can i ask what doses you were on before you stopped?

Nugger
Nugger in reply to Padayn01

Flex 50 twice a day & bisop, they had me on 7.5 & I gradually reduced it, last I was on 2.5 mg

Padayn01
Padayn01 in reply to Nugger

Wow 7.5 mg that’s high I was in 3.75 it totally wiped me out, good for you though I’m stopping the meds

I am not taking any medication. I was diagnosed in ER with Aflutter in January this year, then in May with Afib. So perhaps it has progressed. Or perhaps I had both all along. I have had significant palpitations and arrhythmia for 5 years - probably Aflutter, I think. Because since my Afib diagnosis in May, I no longer get palpitations. My episodes are mostly non-symptomatic now since May. I detect arrhythmia now with fingertip pulse-oximeter (waveform along bottom)

I currently am having an arrhythmic episode once every 3 weeks that lasts 3-4 days. Although my most recent halted after just 4 hours (to my delight and astonishment) after I implemented a 'natural' rescue strategy for first time ever - 1 small can low-sodium V8, 400 mg magnesium, 2 cups of water... all taken immediately at outset. And then I continued drinking water until it stopped 4 hours later.

I have at times, briefly tried both metoprolol and digoxin. And have played with dose to see if there is any level of metoprolol I could tolerate daily. Decided there wasn't. And also think it maybe doing me more harm than good. I don't feel drugs are in my best interest at this time.

I am on a big learning curve right now with all of this. But I believe I can find a way to manage episodes, reduce their length and frequency, and perhaps eliminate this problem altogether without using drugs or surgery. Quite a few afibbers have. Time will tell!

Good luck!

kim

Good luck to you

I love to be off meds

We do each have to find our own best way through all of this. There are many paths. Afib is so individual in the way it manifests in each of us. Good luck to you too! :)

Tomred
Tomred in reply to PlanetaryKim

Hi planetary Kim what is v8 where would I get it I'm wondering if 800 mg of magnesium was taken (with a bathroom nearby) would it maybe stop an event do you reckon this protocol of yours really has desirable effect I shall be trying it thanks

PlanetaryKim
PlanetaryKim in reply to Tomred

Hi Tomred. I have heard of some people taking that much magnesium (800 mg) and even more at outset of AF and claiming it converts them. And some forms of magnesium less likely to cause diarrhea than others. I take mg bisglycinate. I think it will really vary person to person. Perhaps people who are low in Mg to begin with will be more affected by Mg. Perhaps people with adrenergic afib will be more affected by Mg, since it is calming. I don't know.

The point of the low-sodium V8 is really the potassium - 600 mg in a 5.5 oz can. I suspect that made the most difference in my case because I had not had that before - the V8. Whereas I do supplement with magnesium every day. It's a vegetable juice very common in North America. Here is a link on amazon uk, but it says currently unavailable unfortunately: amazon.co.uk/Sodium-100-Veg...

If you do find it anywhere (I assume you are in UK?), be sure to get the low sodium, not regular. It has way less salt, which is important with AF, and quite a bit more potassium than regular.

I have only had one occasion to try this rescue protocol. I was very impressed! But of course it could have been pure coincidence that my afib stopped just 4 hours after doing this rather than running the typical 4 days.

I will keep people updated on future efforts with this.

kim

grussell49
grussell49 in reply to Tomred

V8 is a vegetable juice in a can most grocery stores carry it

maybe not in UK though?

Trouble is that V8 is pasteurised so not good for the gut Microbiome and so much better to juice your own and it’s really easy and a lot cheaper.

No, it’s not carried in any store to my knowledge but it is available by mail order and not in cans but in packs.

Personally I need to take at least 6g of salt daily, not a good idea though to take it in through any pre-prepared foods.

I have found juicing daily to be a lot of work. More so if I am using 8 vegetables. It would be a level of work I would not continue daily. Also, I doubt it would have this potassium level. I believe this is added potassium in the V8. Because the low sodium V8 has much more potassium than the regular. I don't think homemade juice of these 8 different veggies would contain 100 mg potassium per ounce. In which case, doubtful it would work as rescue/conversion strategy. My interest in the V8 is that it converts my afib. At least on my one attempt so far. And other people's too, which is how I came to try it. Testimonials on other afib forums.

But gut microbiome very important too. Thank you for the reminder. :)

Janith
Janith in reply to PlanetaryKim

I see low sodium v-8 juice here in USA ... Amazon ... 6 cans for $3.50 ... readily available ... l’m a prime member so free delivery! I ordered just in case!

PlanetaryKim
PlanetaryKim in reply to Janith

Good luck with it! It may not 'work' for everyone. But I had seen several Afib people say it was part of their rescue/conversion strategy. So I tried it, and my first attempt seemed to work. Unless it was just coincidence that I converted quickly.

Janith
Janith in reply to PlanetaryKim

I rarely have afib attacks ... but when l do ... l am scared silly and l immediately go to our emergency room which is five minutes away. They immediately take me in and do their thing! However, l will try this if and when l have another ... hopefully NEVER! It will be here tomorrow! Did you say that you take magnesium with it? Along with water? Correct? Thank you for the idea!

PlanetaryKim
PlanetaryKim in reply to Janith

Yes, I also took 400 mg magnesium (bisglycinate is the type I take) and drank 2 cups water immediately, then continued drinking water over next 4 hours

Janith
Janith in reply to PlanetaryKim

Thank you!!

Twice I've stopped my meds and then found that shortly afterwards I've gone back into normal sinus rhythm. Once for about 6 months and another for 7, but AF always came back and now I never go back into sinus rhythm when I stop my tablets, though wouldn't ever stop my anticoagulant. My good periods are usually more over the summer months and it was at the end of this that AF would return.

I had two cardioversions last year, one in February and one in October and many others before then. Now I've been told, no more. I'm visiting my AF nurse quite often now, while she tries to tweak my medication. She has me feeling better already.

The best thing about it is having an ECG when I visit every one or two weeks so I can be told just what my heart is doing. It seems I'm in constant atrial flutter.

I really don't blame you for what you're doing and wish you success.

Jean

Nugger
Nugger in reply to jeanjeannie50

Them AF NURSES, the one I was seeing, new squat about AF, told me my cardia was a toy!

PlanetaryKim
PlanetaryKim in reply to Nugger

I was under impression an increasing number of cardiologists are recommending their AF patients get a Kardia.

Nugger
Nugger in reply to PlanetaryKim

Saw one doctor,that said your heart seems fine, really I said, pulled out the Kardia & you would have thought I’d pulled out a gun! Did an ecg & he says ok, sent me for a proper ecg & what you know, I’m in AF, doing 140/160

PlanetaryKim
PlanetaryKim in reply to Nugger

'pulled out a gun' - hahahah!

Rubymurray25
Rubymurray25 in reply to Nugger

" Pulled out a Gun " has made my day! Sadly we try and help and they think we are interfering .

jeanjeannie50
jeanjeannie50 in reply to Nugger

Mine is good and knows what she's talking about. She's in her 50's and has been doing the job for years. I can tell she really wants to help me and I'm not easily duped. Listens to my suggestions too.

How long is it now Jean you been in constant AF?

I think it's since the end of last November.

Gosh I'd love an AFib nurse...

TamlaMotown
TamlaMotown in reply to RajaRua

Me too, my nearest EP is 60 miles away!

Gertsen
Gertsen in reply to Nugger

My doctor uses one when visiting patents

Hi Jean

You’ve been through so much, you probably know that atrial flutter if in the right atrium is much easier to ablate than atrial fibrillation. Also that the “success” rate is very high. Your EP may be able to detect if it’s flutter from the right atrium. You may, of course wish to avoid another procedure.

Thanks for all the work you do to help and support the folk who turn to this group for help. You are much appreciated.

Thank you for your kind words.

Unfortunately my EP has said no more ablations for me - I've had three. If all else fails I'll see what my AF nurse thinks about me being referred back to him. I do find it odd being told its flutter as my heartbeats are unevenly spaced. Since my AF nurse tweaked my meds a few weeks ago I'm feeling quite well.

Jean

Dear Jean

I have had three bouts of flutter. I thought my beats were unevenly spaced too.

My EP who strikes me as excellent and with whom I have a good relationship has said he will not ablate again for atrial fibrillation. ( I’ve had one which is holding up so far but I have an enlarged left atrium and a lung condition which means the afib is likely to return at some point). I was hospitalised for the flutter and the cardiologist there who knows my EP well said that he felt it it should be no problem to ablate for flutter because if it’s right atrium flutter, ablating it should be a simple procedure. Although the AF nurses are wonderful, sometimes it’s important to see the EP. Since becoming a member here, I have learned to take a more active role in dealing with health problems and aim to see a consultant if it seems necessary. Look well after yourself, Jean. You do so much for others! Thanks again.

Hi just reading this new trail of posts- very sorry Jean that you are in constant flutter Dash that would be my nightmare since it felt so terrible to me when I had flutter I thought I would die. I’m new to this group -Went to ER with flutter/Af/pvc A couple weeks ago – I’ve had two good cardiologist recommend I buy cardiamobile-and I know it will print out an EKG and you can record it anywhere – but I’m not sure how this really helps you? Other than the fact you have the episode on tape. As far as medication I am holding off... I have Low blood pressure to start and most of them do lower your blood pressure and that makes me feel extremely tired. No episodes since cardioversion by procainimide in ER.

I wonder if the V8 combo would work for flutter as well... ?

Hi Brendie, I'm not sure what the V8 combo is? I'm in the UK.

The Kardia is very popular here too and has been for many years. Having once had an extremely high heart rate that went too fast to register in my wrist, I bought a good stethoscope instead.

After 15 years, the best I've discovered I can do re AF is ignore it as much as I possibly can. If I think about it and tune in to what it's doing it will oblige and start playing up.

Fortunately since my third ablation and changing my diet drastically my heart rate rarely goes above 100 at rest. I have had high rate flutter and it's certainly debilitating. I think I've been tortured in every way AF can do to us! I was also unaware that I had an under-active thyroid caused by taking the heart drug Amiodarone. I was putting my extreme tiredness from that down to my heart. So glad those days are behind me now, but certainly feel for everyone else still suffering.

Jean

Hi Jean good to hear you’re doing better!

the V8 Combo was what I read from post/as suggested by Kim above ...

Do you take medication for your thyroid now?

The flutter feels terrible.. I can’t stand it for long at all!!

Yes, the thyroid medication 75mg of levothyroxine I take daily has given me back my life. I now have energy again.

Arrhythmia's are like a kind of torture aren't they? When we have a really bad attack I think it's quite normal to wonder whether we'll survive it. Mine would usually be in the middle of the night and although my daughter's mobile was switched off then, when she put it on in the morning she would know to check on me as I live on my own.

V8 is a very popular/famous veggie juice in North America, sold in stores and on amazon. Am just discovering in this thread it is not a thing in UK. Has 600 mg potassium in 5.5 oz can. But only in the low-sodium variety. So that is important, if you do happen to find it. I don't believe there is any other beverage with this potassium level ounce-for-ounce. I have not found one amazon.co.uk/Sodium-100-Veg...

Quite a few afibbers attest to it being part of their conversion strategy.

Thank you for this information Kim. I've just asked my sister about it (she's lived in the U.S. for over 50 years) and she said it's absolutely delicious, but was doubtful about anything in a can being good for anyone. I told her people had found it helpful for reverting back to sinus rhythm and for us that was the most wonderful thing anything could do. Her heart is perfect, but she said talking about it had made her hanker for some.

I usually eat bananas and dates daily for my potassium, but guess that's probably not as much as is in these cans of V8.

Jean

Actually, V8 juice doesn't have much bad in it. It literally is just 8 different juiced vegetables - and this high potassium level in the low-sodium version, presumably because they replace sodium chloride with a potassium salt. I just looked online and a medium banana has 422 mg potassium. and the 5.25 oz can of V8 has 530 mg. So they are similar potassium content. It could be the potassium in the V8 enters the blood stream quicker because it is going in as a liquid vs the potassium in a banana. And the speedy delivery to blood could help with conversion. All speculation here on my part. I will be trying it again next time I have an episode.

Can I just ask also are your Doctors aware you’ve stoped?

Nugger
Nugger in reply to Padayn01

Yes

Padayn01
Padayn01 in reply to Nugger

What did they say convince you to go back on them?

Nugger
Nugger in reply to Padayn01

Nope

Padayn01
Padayn01 in reply to Nugger

Are you taking any supplements or anything natural to help you in anyway? Diet etc?

Nugger
Nugger in reply to Padayn01

Eat lots of salads, no supplements, when I say salads, I don’t mean a Uk salad lol olives, avocados,tomatoes, blueberries, ect, dressing olive oil, salt & vinegar, blob of full fat Greek yogurt

I also fast for 40 hrs every week

Padayn01
Padayn01 in reply to Nugger

Diet is the one that’s good your controlling it with healthy food

Padayn01
Padayn01 in reply to Nugger

Fasting is good I hear I try and do it from 7pm to 12pm next day about 15 hours fasting

Nugger
Nugger in reply to Padayn01

I started doing it to kickstart losing weight, done a couple of 3 days & even a week, just to see if I could, just come off my weekly fast 3 hrs ago & thought, think I’m going to eat nothing but fruit & veg today! Keeps my weight in check

Padayn01
Padayn01 in reply to Nugger

So do you just drink water when you fast?

Nugger
Nugger in reply to Padayn01

Yes but, if your doing a long one, you need to take in electrolytes

Plus, take it slow getting out of chairs ect, ended up on the floor once lol low blood pressure

Padayn01
Padayn01 in reply to Nugger

Sorry for the questions but how do you get the right amount of electrolyte in?

Nugger
Nugger in reply to Padayn01

Good question, I would just sip throughout the day, it’s basically, salt, lemon juice & a little honey to make it taste better, I use the pink salt.

It’s funny how our bodies work on electricity & salts are vital for electricity to flow, so very important if your doing long fasts, didn’t bother with the 3 day fasts.

RajaRua
RajaRua in reply to Nugger

Do you put lemon juice, salt and honey in water or drink it neat? And thank you for your tips Nugger.

Nugger
Nugger in reply to RajaRua

In water, just google it

RajaRua
RajaRua in reply to Nugger

Are you on a plant based diet Nugger? Also I see you fast? I used to do long fasts before I got AFib for 7-10days, but stopped as I always got severe palpitations while fasting. I have tried intermittent fasting but find I need to be careful with that too. Interested in how long you fast for? And do take that electrolyte drink while fasting or when you have AFibb? I also have Fibromyalgia which complicates things.....

Nugger
Nugger in reply to RajaRua

Plant based diet mmmm, well, I’m eating more plants than ever before but I do eat meat, I only used the electrolytes on the 7 day fast.

RajaRua
RajaRua in reply to Nugger

Thanks Nugger, if I get up the courage to fast I'll try that electrolyte drink for sure. The diet thing is confusing as I thought that good fats are OK and even good for us but this plant based diet asks you to cut out anything that has eyes and a mother plus oils of all kinds! Except nuts and seeds of course!I think I'll ask on here if anyone is doing this and if it helps. Friends of mine are doing it now for 6 months and feel very well and energized on it. They've also lost a pile of weight. Neither of them gets AFib though. The book is The Forks Over Knives Plan by Alona Pulde MD and Matthew Lederman MD There is also a documentary called Forks Over Knives you can watch on netflix. Ideas around diet seem to change so often.....it can get confusing!

Nugger
Nugger in reply to RajaRua

I grew up in a mining village, in yorkshire & our staple snack was white bread with meat drippings ( Fat ) sprinkled with salt, now after years on that diet, you would think my arteries would be blocked up to no end, right ? No wrong lol, the cardiologist was convinced I had a blockage causing my AF, so performed an angiogram, said I had the arteries of a 21 year old!

RajaRua
RajaRua in reply to Nugger

I actually remember the dripping thing myself Nugger. My Mother used to use dripping to fry food with. It was very tasty indeed. Unfortunately though they both got heart blockages and my brother also. Dad died of a massive heart attack and Mum had a triple heart by-pass as did my older brother. Our dripping here in Ireland must've been a bit fattier than wherever you are! :-)) I had an angio last year and I do have some heart disease but nothing that needs stenting. I want to make sure I never need a stent or open-heart surgery. I'd also appreciate getting some energy back!

Nugger
Nugger in reply to RajaRua

Just made friends with a guy from Sligo, made us a BLT the other day & said I put a little of the bacon fat on mine, would you like some, o yes he says!

I guess if it’s in your gene make up, it won’t matter what you eat.

RajaRua
RajaRua in reply to Nugger

Yes I have to wonder about it!

I think it so sad that you even need to ask this question and are not supported in your choice to act response ably.

We need a lot more help and support for those who cannot or choice not to take drugs because their experience is that it makes them feel worse.

Actually I feel angry on your (and the many others who want better support to help themselves to avoid treatments with consequences) behalf.

RajaRua
RajaRua in reply to CDreamer

I totally agree CD Dreamer.

Why stop flecainide? It is a very helpful drug for many people and has certainly stopped me having any AF for the last 5 years. If you are having frequent episodes or are permanently in AF you need to see your doctor about blood thinning drugs.

Thomas45
Thomas45 in reply to EdProsper

Anticoagulants do NOT thin the blood. They delay coagulation of the blood, reducing the occurrence of blood clots.

I have permanent AF. With the agreement and advice of a very knowledgeable GP I do not take any medication for AF, apart from an anticoagulant. When a Cardio tried to put me on diltiazem I suggested that would be against NICE guidelines.

He was amazed that I knew about NICE. Sometimes there are no simple solutions to illnesses, and patients should always be involved in decisions about their health.

belindalore
belindalore in reply to Thomas45

What is NICE? I live in the US.

Nugger
Nugger in reply to belindalore

nice.org.uk/

Nugger
Nugger in reply to Thomas45

Same here, went in to hospital, heart rate 140/160, let me out next day, with a beta blocker & a baby aspirin!

Rang up to complain & point out what it says on the NICE site,was told, that was there protocol !

EdProsper
EdProsper in reply to Thomas45

Yes, they are correctly called anticoagulents, apixaban being flavour of the month. But I was responding to the OP who does not have permanent AF

CDreamer
CDreamer in reply to EdProsper

If you are in permanent AF there is no point as there is no benefit. If it doesn’t improve your QOL & you feel no benefit & isn’t effective in stopping or preventing AF then the risks posed by taking the drug (which is a toxic drug with potential, serious long term consequences) why would you want to take it?

If it helps you personally, by all means continue but know it hinders & can pose a threat for others.

belindalore
belindalore in reply to CDreamer

You are talking about beta blockers right? It gets a little confusing sometimes following the posts. I've had only one bout of Afib (live in Florida) and was told I would have to stay on Eliquis and metoprolol for the rest of my life. I believe it's the metoprolol that doesn't agree with me and I've never had high BP so I don't know if it's worth staying on it. I'm due for a treadmill stress test and another holter monitor test so I'll see what that brings. I do take magnesium which also lowers BP. So careful how much I take and I take it more for calming. I know you said you continue to take your blood thinner and that makes sense. I'd love to be able to actually sit and talk to the cardio Dr for an hour. But due to restrictions from insurance you get 25 minutes with a specialist and that's not even close to being enough time. Besides some of these Drs are profit driven so they hurry you out too. I miss the good old days when I was young when the Drs actually cared about the patient. If my tests check out okay I may quit the metoprolol and go with something else natural.

CDreamer
CDreamer in reply to belindalore

My reply was directed to @EdProsper who was talking about Flecainide which is a antiarrythmic drug, not a Beta Blocker. He finds Flecainide helpful as it stops his AF whereas for Nugger, original poster, doesn’t find it helpful and Thomas45 is in permanent AF therefor there wouldn’t be any point in him taking an antiarrythmic as it’s going to be ineffective. Look at who the reply is directed to and the thread will start to make a lot more sense.

Generally though, I’m talking about any medication to control HR, BP or rhythm. I was also told to take Beta Blocker and first refused because I instinctively knew they wouldn’t suit me. I was talked into ‘trying’ them to see if they helped. They didn’t, my HR still went through the roof, my BP still dropped through the floor when in AF and when I wasn’t taking them I was breathless, exercise intolerant, fatigued and weak. And they have a similar affect on many people - but they help some and the only way to know if they help or hinder is to try.

Beta Blockers are normally the 1st medication that Drs reach for after anticoagulation as there is some clinical studies which indicate that controlling HR in AF patients can, in the long term, be beneficial. As it happens my now EP (Electrophysiologist) doesn’t believe that and when I asked him the direct question, replied that it can be helpful in moderating BP. I asked him if being in very fast HR when in AF will do long term damage, he thought not. Asked then why were doctors prescribing them - QOL = quality of life - many people find they responded well and it controlled their HR so made them able to function better.

Flecainide = a rhythm control drug and that is the drug we were talking about specifically. The conventional wisdom is to first try rate control, then rhythm control.

Thankfully, thankfully here all that is now starting to change and Lifestyle is now being recognised as the first line recommendation, along with controlling any other conditions. But here Doctors are under enormous pressure from patients saying - can’t you just give me a pill or there must be something you can do because Lifestyle is hard work, time consuming and means we need to do the hard work and pay for it.

Personally I welcome and receive great support from my doctors and thankfully I have now found a group of GPs and specialists who support me - after many years of fight and arguments and failings out with more than one doctor so I don’t believe we can generalise in such a way. What I get is that you haven’t yet found a doctor which is able to work with you.

Everyone responds very differently to any and every treatment - there is no one size fits all but because we haven’t quite yet caught up with the ideas of individual, personalised medicine - we are all treated as though there is one size fits all.

Beta Blockers tend to work for people with Adrenaline induced AF and not for people with vagal AF and shouldn’t be taken by people with Myasthenia or used with caution for those with Asthma as it is known to exacerbate those condition. I now have a red alert on my medical file preventing any doctor from even suggesting I be prescribed Beta Blockers because, along with other treatments they exacerbate Myasthenia, an underlying condition, to such an extent that I am unable to function and at worst, could be life threatening for me.

Personalised medicine costs - doesn’t matter where you live and under which system - it costs - a lot! State system or free market very, very few people are in a position to be able to afford that. So we do the groundwork ourselves, if we can and have the interest, the time, energy and resources. Gleaning a little information here and there, experimenting (hopefully sensibly and safely) and finding out what works for us and what doesn’t.

You HAVE to be an active agent in your own wellbeing if you want to heal, as only you can heal yourself, doctors can only assist and use their training and knowledge and hopefully their caring for their fellow man to advise.

We have the system we have, we may rant and rail against it but we also need to work within it. If you have 30 mins - then make those 30 mins count. Be precise and concise. For you - it’s your first time, but for your doctor - they have probably seen numerous patients with similar condition asking the same questions. You can do a really good consult with a doctor in 15 mins - if you are well enough prepared.

DO - go with a list of questions.

START - with your main concern.

MOVE - to what you hope to get out of your consultation and hope/expect from your doctor today

BE INFORMED - know what your doctor is talking about concerning drugs he may suggest and know the questions to ask him about those drugs which means doing your homework.

DON”T - tell them your Life history, unless they ask.

BE PRECISE - not helpful to be vague - eg:- I found out that fatigue to a doctor has a different meaning to feeling weak to tired all the time. Maybe I would have been diagnosed a little sooner, had I known then to be precise.

Doctors today are better trained, have much better analytical tools, are far better resourced and can diagnose and treat far more conditions than ever before BUT they are patient time deprived so if you want a general chat, your doctor is not the person to seek out and frankly I don’t expect that. I want a doctor who is up to date, willing to listen to me but also correct me when I have knowledge deficit, to work with me and support my choices on treatment options.

I don’t want to be told what to do and what to take, mindlessly and without information so ask for explanations if you don’t know the down side as well as the upside of a drug and if your doctor won’t tell you - find out yourself - we are also much better resourced.

I do think doctors care, most a lot but I also know a lot who suffer from Nocebo = of being completely ineffective.

Doctor/patient is a relationship and we need to co-create a working alliance with our doctors to have any chance healing. Hope you find your fit very soon, take care.

EdProsper
EdProsper in reply to CDreamer

Most of what you say here is quite true and helpful but your statement "The conventional wisdom is to first try rate control, then rhythm control." is not so helpful. Dangers of blood clots forming is much reduced with normal rhythm so controlling rate is less beneficial.

And to add to your "DONT'S" - Do not stop taking drugs which control heart rhythm without discussing it with your doctor.

CDreamer
CDreamer in reply to EdProsper

Discussion with your medics is always advisable but I stand by my statements. I think we have choices & opinions vary. I stopped both beta blockers & antiArrythmic drugs because I was so ill on them - it took too long to get an appointment to discuss. My doctors agreed, retrospectively, I was wise to do so.

I’m not recommending that course of action but the acceptance of the concept of informed self-determination.

belindalore
belindalore in reply to CDreamer

All your input is nice. But you apparently have the resources financially and otherwise to have found good Drs. Unfortunately I do not and those who don't are the ones who fall in between the cracks. If I had the finances I probably wouldn't be reaching out to this forum. In the US if you don't have the finances and excellent insurance to search for a Dr who is open minded and good in his field then you are basically screwed. Just the way it is over here. I just don't have the dollars to find a good Dr. It's not a pity party. It's how it is. I do the best I can with what I have. And it doesn't help that we are in this pandemic. Just every life is a struggle for most people now and getting sick and then wondering if you could get the virus makes it worse. I'm usually pretty good at handling being sick. But this has been a blow to me. And I try to be positive but it's hard.

CDreamer
CDreamer in reply to belindalore

No I don’t have unlimited resources and use mainly the NHS.

I do have Health Insurance (From my workplace) but that doesn’t cover chronic conditions.

I am very sympathetic to your problems & very conscious that healthcare is resourced very differently in the US. People fall through the cracks everywhere but I have found really helpful, supportive doctors & ones to avoid in many countries & systems, US included as my husband’s office is in Colarado, have lived in Spain & travelled widely.

No system is perfect.

belindalore
belindalore in reply to CDreamer

Sorry for my assumptions. On my insurance I'm allowed 4 visits to the cardio Dr til the end of December of this year. To see him more often I would probably have to pay on my own. I receive only 550 dollars in social security . And one visit would probably be close to half that. I don't know if you have to pay for office visits or not. When my insurance covers an office call I still have to pay part. I took care of my ailing mother for several years and didn't work so why I don't receive much in social security. I live with my ex and he's gracious enough to allow me to otherwise I'd have no where else to go. He also has heart problems and on the same meds as me. But he gets his care through our Veterans medical system and he pays zero for everything be it meds or a stay in the hospital. He's fortunate to have that. Not many do.

CDreamer
CDreamer in reply to belindalore

That’s ok - I’ve just learned a lot as I’ve been managing chronic conditions since I was 18. I’ve learned a lot from people on this forum & the AFA Patient Days here in UK - also in US & online- has a fantastic education network for both patients & doctors so if you have any problems, it’s really worth contacting them for advice. They also have a register of doctors & other health professionals who are interested in AF.

belindalore
belindalore in reply to CDreamer

Still there is a fee for talking to the online Drs. Nothing like that is free here.

CDreamer
CDreamer in reply to belindalore

AFA doesn’t charge for advice - small fee for education programmes.

heartrhythmalliance.org/aa/...

belindalore
belindalore in reply to CDreamer

Thanks. You're a good person.

Nugger
Nugger in reply to CDreamer

WOW! Well said!

With regard to ceasing to take beta blockers , it is wise to remember they lower blood pressure so unless you are monitoring it there may be sudden rise of which you are unaware and that could have consequences.

Thomas45
Thomas45 in reply to doodle68

I'm not on beta blockers because of unacceptable side effects which led to ambulance admission to hospital. I'm sure my BP fluctuates. I have to rely on my prostrate medication, Doxazosin, to keep it in check.

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