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Atrial Fibrillation Support

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A little help

7164 profile image
7164
27 Replies

Good morning

I am aiming this at bob but thought I would direct this at all you helpful people

I have had Afib for 15 months. Seen my cardio twice for a very short session. Told me to take Bisop and avoid fizzy drinks. The only test I had was the echo and the veg showed Afib. No other investigation and get on. Four attacks since then and hospital each time as I get chest tightness. I asked my gp for other tests and a referral to an EP.

Now nothing has happened and the cardiologist is off work sick for the last 6 weeks. The bisop is keeping the attacks away but having a negative effect on other things.

I asked my go again but he says that any referrals etc is down to cardio.

I live in the Highland region and feel we have made no progress.

Any thoughts and what tests should I have had? A private EP well my gp doesn’t know?

Thanks

Rod

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27 Replies
Padayn01 profile image
Padayn01

Hi Rod, really sorry that this horrible condition is effecting you, but yes you are right BobD will be the man for this question can i just ask was there no talk of an ablation being considered?

7164 profile image
7164 in reply toPadayn01

Padatn01

No mention of ablation

I still have not seen an EP and the cardio has little input when I did see him

Rid

wilsond profile image
wilsond

You cna self refer to any EP via the private route,I paid 175 and had a half hour with proff Osman.He then transferred me to his NhS list.I saw him within days. In the Highlands im nit sure where your best bet might be.Probably Glasgow? If you look on the hospital site it will list consultants in their area of expertise, and then you contact his/her secretary tonarrange an appointment.

GP is informed afterwards. Not being particularly helpful I think!

Good luck

7164 profile image
7164 in reply towilsond

Thank you

jeanjeannie50 profile image
jeanjeannie50

To get BobD to be aware of your post you need to type the @ sign in front of his name . So first type the @ sign start typing his name and it will provide an automatic link to alert him. Like this BobD . There I've done it for you. When you see his name in a drop down box as you type it, select it. You will know that you've done it right if the name is in blue.

Jean

BobD profile image
BobDVolunteer

Sorry Wednesday is old farts coffee morning day. I really don't know the rules in bonny Scotland but under NICE guidelines (if they are relevant) you have the right to be treated by whoever or wherever you wish. You may need to press your GP for a referral to an EP or as others have said find one you wish to see and make a private appointment. You will often still need a letter from your GP but at least you get correct advice.

Interestingly at HRC Patients day there was a debate as to whether GP or EP should be in charge of treatment and of course our own Matt Fay, a GP from Bradford, spoke eloquently on behalf of GPs but sadly not all GPs are equal and few if any have his drive and commitment to the treatment of arrhythmias so I would have voted against him in this instance. My own GP, bless her, usually asks me how to treat me if I see her about any heart related matters. lol 😂

7164 profile image
7164 in reply toBobD

Thanks Bob

My GP insists it’s up to the cardio department to refer to EP I don’t even know if they have one in Highland?

Rang the cardio department and finally got a helpful person. She looked at my file and she told me that the cardiologist is talking about an ablation but hadn’t told me!! You would have heard all of this before.

Anyway I am seeing a different cardiologist on the 28th.

I am not adverse to the ablation but before that surely I should have all the tests? All I have had is an echocardiogram which came back fine a year ago but nothing else. I had to push for blood tests.

So wrong as it may be please guide me on what tests I should have before I agree to the ablation.

Last thing just before all the Af started I was moving house and lifting lots. On the day I felt a rip sensation in my chest on the upper left side. I notice now that when I strain or breath hard that feeling comes back then an ectopic?

Suggestions on a postcard 😊

Thank you

Rod

BobD profile image
BobDVolunteer in reply to7164

Echo , ECG and thyroid tests are about all you can expect unless you get stuck in AF in which case a cardioversion may be tried to see if you feel better in NSR. No treatment is a cure and all is for quailty of life .

7164 profile image
7164 in reply toBobD

thanks bob

Shcldavies profile image
Shcldavies

I live in the Fife and Edinburgh area and can explain what happened to me in terms of who treats the condition.

Initially its the GP who generally prescribe low dose Biscoprolol (or similar), if considered necessary they will contact the Cardiologist who may see you or advice the GP on treatment. If that does not work you will see the Cardiologist who may prescribe more potent drugs (often with side effects) and may contact the EP who will advise on treatment.

The EP I saw has a very good reputation he is Dr Lang from Edinburgh Royal Infirmary.

For more information on your condition or consultant advice go on youtube, type "yorkcardiology" in the search box, you will find many videos from Dr Gupta that are well worth watching, he also offers a good vale on line consultation (FaceTime etc) which is around £60.

7164 profile image
7164 in reply toShcldavies

Thank you

Ppiman profile image
Ppiman

An echo-cardiogram is second only to a stress MRI in terms of what it reveals, so that would have alerted the cardiologist to any important structural defects or heart weakness. I guess there were none. You would also have had blood tests for cardiac enzymes and inflammatory markers, I suppose, as these are normal after chest tightness.

The bisoprolol would be to keep your resting heart rate healthily below 100, and you're not on anticoagulant therapy, so your doctors must be happy with that aspect of your circulation.

When I was on bisoprolol chest tightness and discomfort or even some weird sensations spreading into my shoulder blades were the order of the day. I theorised that it might happen because the body needed more blood supply at times than the bisoprolol would allow the heart to pump - but I have no idea. It didn't alert my EP cardio or GP to anything at all even though it caused me great deal of anxiety and even fear.

Maybe your GP is weighing up how well you can manage without being given an ablation, given that many people do seem able to cope well enough with their arrhythmias? My old friend, Philip, lives happily with his even though it's buzzing away in the background all the time. In the end, the decision whether or not to have an ablation comes down to whether you can cope without one, I guess. Whatever people say of the procedure, it is expensive and not without some risks; also, with fibrillation, it isn't always successful first time round, leading to the need for a repeat procedure(s). I suppose your GP has an eye on the costs to his budget - but I don't know how that works in Scotland.

If I were you, I'd book for a double GP appointment and have a deep discussion about it all, including discussing its effect on you overall in terms of anxiety and quality of life.

I wish you well. It can be an awful condition to live with.

Steve

7164 profile image
7164 in reply toPpiman

Steve

Thank you so much. Bisop is doing the same to me.

Would love to stop it

Ppiman profile image
Ppiman in reply toPpiman

Bisoprolol is only acting as a kind of "brake" on your heart rate, to keep it below 100bpm resting and as symptom free as possible. It's possible you don't need it all the time - maybe as and when? Ask your GP about this "pill in the pocket" approach, maybe (but I'm sure I needn't say never to do such a thing without his or her approval).

One thing I learned was that reducing bisoprolol's dosage makes little difference to the side effects it caused. The effect of the drug is far from "linear", so, with me, even 1.25mg made me symptomatic - not that much different to when I was on 10mg and 5mg.

Steve

Jennyquilt0 profile image
Jennyquilt0

I too live in the Highlands, but have to just say that my GP is brilliant and the cardiologist in the local hospital and in the main hospital have all been excellent at taking care of me and my PAF, I now have had a pacemaker fitted so no longer get dizzy spells, I do still get PAF, but can cope with it without having to go into hospital . I am really sorry that you are having a bad experience., I think you have to try get a referral to another cardiologist there is more than one in the Highlands in the main hospital. Wishing you good luck and hope things get better for you.

7164 profile image
7164 in reply toJennyquilt0

Hi Jenny

My gp is on Nairn and much as they are nice they admit that their knowledge is limited and ask the cardiologist. My cardiologist was nice but not overly helpful little discussion and no plan.

I won’t name him but I have changed to see a different one.

Rod

Jennyquilt0 profile image
Jennyquilt0 in reply to7164

Hope things now work out for you

lindat15 profile image
lindat15

I live in Aberdeen area. Back in 2017 initially seen by a visiting cardiologist at a weekend after waiting almost 9 months and then offered cardioversion 3 months later. After this failed further contact by GP surgery eventually resulted in appt with an excellent experienced EP and things have been much better, currently recovering from second ablation. It was very frustrating getting access to the correct professional but fantastic care since then. Hope you get directed to suitable EP soon

7164 profile image
7164 in reply tolindat15

Hi Linda

Why is it so hard to see the right people.

lindat15 profile image
lindat15 in reply to7164

Hi Rod personally I think there are not enough EPs which means in the first instance you get referred through to general Cardiologist and they prescribe the usual meds which I'm sure work for many people. Unfortunately meds didn't work for me so really needed that next level of expertise. I was so frustrated at the time and really had to continue pushing- fortunately I had extremely good GP. There is a process that needs to be followed - meds first then cardioversion and depending on the outcome possible discussion around ablation( think that's the general protocol that is followed, may even be NICE recommendation, all of which adds to the waiting time. It may be that if you went private as I mentioned in reply to your other post that you could access a very useful discussion with Dr Broadhurst and see what options are.

Highlander51 profile image
Highlander51

I had the same experience, I live in Moray. I went private to Albyn in Aberdeen. GP gave me a referral. Cost £200; best money I ever spent. Can give you EP name if you want it.

7164 profile image
7164 in reply toHighlander51

Highlander

I live in Nairn and feel overlooked so yes please. We’re you seen at Raigmore?

Rod

Highlander51 profile image
Highlander51 in reply to7164

Went to Aberdeen, St Albyns, Dr Paul Broadhurst, can’t recommend him enough. Very experienced in AF, had my ablation year and a half ago. Once seen at Albyn transferred onto his NHS list.

lindat15 profile image
lindat15 in reply toHighlander51

Dr Paul Broadhurst is EP who I see and, like you , can't speak highly enough of him. Felt very reassured being under his care. He tells it as it is so you know exactly what's being done - every confidence in him , he's done both my ablations and warned at the outset that in all likelihood I'd need 2 due to persistent AF. So glad I eventually got referral through to him.

Rosemaryb1349 profile image
Rosemaryb1349

I too live in Highlands but was finally referred to EP Dr Broadhurst in Aberdeen who has treated me by ablation. I was referred by cardioligist in Inverness. Can highly recommend Dr Broadhurst who spent a lot of time explaining things to me once I asked the relevant questions after gathering all the info I could get from this wonderful forum. Good luck with your way forward.

7164 profile image
7164 in reply toRosemaryb1349

Rosemary

Thank you.

I will take your advice

Rod

You might want to give this a try. Works for me.

---------------------------------

After 9 years of trying different foods and logging EVERYTHING I ate, I found sugar (and to a lesser degree, salt – i.e. dehydration) was triggering my Afib. Doctors don't want to hear this - there is no money in telling patients to eat less sugar. Each person has a different sugar threshold - and it changes as you get older, so you need to count every gram of sugar you eat every day (including natural sugars in fruits, etc.). My tolerance level was 190 grams of sugar per day 8 years ago, 85 grams a year and a half ago, and 60 grams today, so AFIB episodes are more frequent and last longer. If you keep your intake of sugar below your threshold level your AFIB will not happen again (easier said than done of course). It's not the food - it's the sugar (or salt - see below) IN the food that's causing your problems. Try it and you will see - should only take you 1 or 2 months of trial-and-error to find your threshold level. And for the record - ALL sugars are treated the same (honey, refined, agave, natural sugars in fruits, etc.). I successfully triggered AFIB by eating a bunch of plums and peaches one day just to test it out. In addition, I have noticed that moderate exercise (7-mile bike ride or 5-mile hike in the park) often puts my Afib heart back in to normal rhythm a couple hours later. Don’t know why – perhaps you burn off the excess sugars in your blood/muscles or sweat out excess salt??

Also, in addition to sugar, if you are dehydrated - this will trigger AFIB as well. It seems (but I have no proof of this) that a little uptick of salt in your blood is being treated the same as an uptick of sugar - both cause AFIB episodes. (I’m not a doctor – it may be the sugar in your muscles/organs and not in your blood, don’t know). In any case you have to keep hydrated, and not eat too much salt. The root problem is that our bodies are not processing sugar/salt properly and no doctor knows why, but the AFIB seems to be a symptom of this and not the primary problem, but medicine is not advanced enough to know the core reason that causes AFIB at this time. You can have a healthy heart and still have Afib – something inside us is triggering it when we eat too much sugar or get (even a little) dehydrated. Find out the core reason for this and you will be a millionaire and make the cover of Time Magazine! Good luck! - Rick Hyer

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