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Symptomatic AF every day, still waiting for treatment.

Cheryl2710 profile image
12 Replies

Afternoon. Hope everyone is well.

I started with chest pain and slow heart rate in November. Had a 24 hr tape in January which showed PAF.

Whilst waiting for the tape I started with tachycardia , shortness of breath and heart racing,on exertion. Light-headedness and fatigue are also daily symptoms. I walk into the bathroom and then upstairs and my heart rate shoots up to 120!

I work full time for the NHS frontline, working 4x 12/14/16 hour shifts, a week plus at least 4 OT shifts a month. I also do the general life/house stuff. And weightlifting 2-3 x a week.

And NEVER got as fatigued as I do now after spending a morning doing general stuff. The fatigue from AF is so different to general fatigue.

I'm off work at the moment and doing home working.

I have a cardiology appointment at Spire Hull next month. (Which can't come soon enough!) ACP at my surgery hasn't started any AF treatment yet as they're wanting cardiology to confirm the symptoms aren't for another reason.

I am so fed up of being off work , not being able to do my usual stuff and being so symptomatic!

It's ridiculous.

Just wanting to reach out to peeps that might understand.

Thanks for taking the time to read this far!

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Cheryl2710 profile image
Cheryl2710
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12 Replies
jeanjeannie50 profile image
jeanjeannie50

Yes Cheryl, on this forum we all certainly understand how dreadfully tired AF can make you feel. An attack can also leave you physically worn out for days.

Having had AF for almost18 years, three ablations and numerous cardioversions my advice to people who have just been diagnosed with AF is the following:

1. You are most unlikely to die from AF. I used to think that the way my heart bounced around in the middle of the night I would surely be found dead next day. Still here though!

2. Changing your diet to a more plant based one, avoiding any foods containing artificial additives, not allowing yourself to become dehydrated, cutting back on sugar and losing weight (if it's needed) will all have a beneficial effect on your AF. Artificial sweeteners were a sure trigger for my attacks. How I wish I'd known all of this before having any of my ablations. Would I have listened if anyone had told me? Probably not, because I believed ablations would cure me - three didn't!

3. This is a hard one, but looking at gadgets that show your pulse and AF will make you anxious and anxiety feeds AF. I was obsessed with what my heart was doing for about the first ten+ years of my AF journey and my attacks were so debilitating I'd end up in a hospital ward, it has taken me a long time to take my mind off this subject and get on with living. The less I think about it, the better I feel. Now I used to feel cross with people who suggested I stop looking at my pulse rate machines, I thought that their AF couldn't be as bad as mine and they didn't understand how poorly attacks made some of us feel. I would get cross with anyone who said they could still go on holiday and carry on life as normal. They made me feel evil, by not understanding how ill I felt!

4. When sitting watching tv make sure you don't slouch, or become so absorbed in what you're watching that you unwittingly do shallow breathing. If you do your heart will protest. Try not to wear anything tight around your waist as this could push the organs inside your stomach upwards against your heart. Also try not to have large meals as they bulge out the stomach and your heart wont be happy with it encroaching on its space, especially when you’re sitting.

5. Try supplementing with magnesium (I use glycinate from YourSupplements). I feel really well and there's nothing I can't do now, despite being in constant low rate AF. Or at least I think I am, I don't check these days.

Jean

Cheryl2710 profile image
Cheryl2710 in reply tojeanjeannie50

Thank you for the reply.

I've been vegan for 2 years. And do try and push my fluids.

I only check my HR range at the end of the day.

I can feel it racing after doing gentle stuff. Stuff that I used to do and not give a 2nd thought to.

Just wanting to get the cardiology appointment out of the way and hopefully get back to work and to my usual self and activities.

Thanks.😘

jeanjeannie50 profile image
jeanjeannie50 in reply toCheryl2710

I know just how you feel, most of us on this forum do. Your choice with your cardiologist will be medication or an ablation, maybe a cardioversion if you are in AF all the time. Jean

Auriculaire profile image
Auriculaire in reply toCheryl2710

Are you taking B12 and vit D supplements as a vegan diet cannot provide these vitamins? Iron also can be low on vegan diets.

Cheryl2710 profile image
Cheryl2710 in reply toAuriculaire

Yep. B12, vit D. Creatine, omega, 3,6,9, Ashwaganda, menocomplex, biotin and collagen. 😀

Auriculaire profile image
Auriculaire in reply toCheryl2710

No magnesium? Vit D needs magnesium to help with absorption so if you are taking vit D it will use up any available magnesium you are getting from your diet more .

CDreamer profile image
CDreamer

Commiserations is all I can offer - my husband just got a letter for ongoing monitoring of various heart stuff - told he can expect to wait 58 weeks - that’s after being on the waiting list since last July.

Afraid to say that we no longer rely on NHS for chronic conditions - mind you at the moment still can’t get a private appointment with a cardiologist either 🙆‍♂️

etheral profile image
etheral in reply toCDreamer

Scary...

Peony4575 profile image
Peony4575

Hi Cheryl sorry you are going through that , and thank you for all you and your NHS co workers do . Have you read The Afib Cure by Dr John Day ? The nurses on here recommend it . Am not suggesting you obsess about AF but knowledge is power and I have made a few lifestyle tweaks as a result of reading it

OldJane profile image
OldJane

it must be so disheartening. I hope you can find some distractions and comforts whilst waiting for a proper assessment and diagnosis. Working for the NHS you will be only too aware of the current waiting and problems. Enraging.

We are not your cardiologist and all our hearts, bodies and journeys will be different even if we can sympathise with dealing with this mongrel condition.

I have had few of your symptoms except when in a full blown episode, and thankfully an ablation stopped those (at least for now). But heart issues are scary and you need proper care, I hope it comes quickly..

You sound exhausted and I hope you can get support and hugs.

Dippy22 profile image
Dippy22

Deepest sympathy my darling! I’m in the same boat! After two years of debilitating back pain preventing my usual activities, I’m now housebound/home alone stuck on the sofa recovering from spinal fusion surgery. Plus dealing with horrendously regular bouts of raging AFib - currently being lined up for a pacemaker just as soon I recover from the surgery!

Just triggered yet ANOTHER episode by eating bacon for lunch. Fatty foods are defo a trigger for me. 🫤

Sadly, everyone I could call on for help have got their own death, disaster and COVID issues. You couldn’t make this up!!

ozziebob profile image
ozziebob

Cheryl,

I realise you seem to be under pressure to return to work, and you are suffering more symptoms than I did, but can I suggest any delay you encounter in getting "treatment" for AF, either medication or a surgical procedure, might serve you well. It will give you extra time to address possible lifestyle issues and vitamin and/or mineral deficiencies that may be implicated in the aetiology of your AF. This is certainly a benefit I enjoyed because of a long wait to be diagnosed, and outside of a hospital setting.

In my case I discovered the beginning of my AF was associated with a deficiency of Vitamin D, apparently a well documented cause of arrhythmias. So it is essential, as Auriculaire mentions above, that possible deficiencies are appropriately tested for asap.

Vitamin D is well known for reducing inflammation throughout the body, including the heart, and therefore part of the aetiology of AF for some. Read my Bio and you will see my story re Vitamin D.

And here's some recent research that shows the importance of keeping your Vitamin D level above the current conservative (out-of-date?) NICE recommended level ...

medscape.com/viewarticle/98...

You might need to join Medscape to read the article, but it's free, and I've had no follow-on issues after joining.

Highly recommended reading.

Good luck in your journey.

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