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Back in Afib

Karendeena profile image
22 Replies

I'm devastated. My last episode of afib was back in January which was triggered by the gastrogaffin and resulting diarrhoea I had while preparing for CT colonoscopy.

I really thought I would stay free for a while as I come to terms with being diagnosed with PMR.

Problem is this episode and the last one started in the early hours oc the morning and still raging almost 24 hours later (my episodes are very symptomatic and usually last up to 48 hours). J am dreading going to bed tonight as I get over anxious which obviously makes things worse.

Any advice you can give me would be appreciated as I suffer from health anxiety and despite my EP Professor Ng telling me it's not life threatening I am convinced I am going to die. So so unhappy. I take sotalol 40mg and apixaban 5mg twice per day

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Karendeena profile image
Karendeena
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22 Replies
Threecats profile image
Threecats

Hi Karendeena I’m sorry to hear you’re struggling. You have my sympathies with the anxiety, particularly in the middle of the night when your heart’s galloping away! I found listening to talking books helped, music too, anything to distract my brain from focussing on what my heart’s up to! I’m sure others will be along with much better suggestions but hope these two will start you off. All the best to you, TC

Kennyb1968 profile image
Kennyb1968 in reply to Threecats

I think that's brilliant advice Threecats

Threecats profile image
Threecats in reply to Kennyb1968

Thanks Kennyb - I certainly find the distraction helps as much as anything does with this wretched condition!

Karendeena profile image
Karendeena in reply to Threecats

Thanks Threecats, I think stress triggered this episode which has been particularly bad. Finally went back into NSR this morning after 31 hours of it, exhausted! I woke in the night last night with my hand that had gone numb, moving it quickly restored feeling was terrified I had a stroke but my GP says it would have affected the whole limb not just my hand! Think I had been lying o it tbh

Threecats profile image
Threecats in reply to Karendeena

Very pleased to hear you're back in NSR but I can imagine you must be shattered after that episode! Make sure you take it easy for a while. Glad that the hand numbness is sorted - I totally get it, like you I have a mind that is more than happy to conjure up all sorts of health catastrophes it reckons I must have based on any random symptom that comes up. This anxiety lark is a challenge, isn't it and the A fib certainly doesn't help! Take care, TC

Singwell profile image
Singwell

Sorry, I don't know what PMR stands for. Is the waiting causing you anxiety? Perhaps this might be triggering the AF. It is hard to come to terms with I know. I once told.ky husband that I felt like I'd been sentenced to a living death- I so hated not knowing when it would 'get me'. It gets better - meaning we get better at living with it. Something that worked for me - one day I counted up how many days a year I got AF. It was about 8! Like you I'm symptomatic (less so post ablation). 8 out of 365 I told myself. Perhaps that's not so bad after all. At some point I stopped waiting for AF to leap out at me and started to live my life again. Differently than before but many good things to enjoy, even in the wretched pandemic. Talk to yourself kindly and do simple things that make you happy, keep well hydrated and eat small regular meals. It will most likely subside.

Karendeena profile image
Karendeena in reply to Singwell

Thank you Singwell, appreciated. PMR is polymyalgia which is a autoimmune condition that causes pain and stiffness in the muscles. I have to take steroids for it, hopefully it will burn itself out at around 2 years ,(that is the guide) think the covid vaccination triggered it

Singwell profile image
Singwell in reply to Karendeena

Gosh. That's harsh. Sorry to hear this.

Ppiman profile image
Ppiman

You must be at Glenfield, as I've seen that name on the board. I'm with Dr Sandilands, Dr. Ng's colleague. What a great team it is there!

I have anxiety similar to you. Maybe most people do to some degree? But I have to believe that the doctors are right and that this feels worse than it is. I struggle to convince myself of that perhaps daily at times but there we are. I'm now into a week of my heart playing up and I, like you, am struggling to stay calm about it.

Steve

Karendeena profile image
Karendeena in reply to Ppiman

Hi Steve, yes, they are amazing at Glenfield. When I ring Prof Ng secretary she answers as secretary to both of them so yes they are a team, I believe one of the best in the country. I have a newspaper article on robotic ablation that Prof Ng did. I feel very confident at Glenfield just not in myself, convinced this afib is going to get me somehow. I think it's because my dad had it was put on warfarin, fell, hit his head and died of a brain bleed at the grand Old age of 60! Maybe that's why I am so anxious

Ppiman profile image
Ppiman in reply to Karendeena

Well, bad luck to your poor dad and to you for losing him so young. Oh my! Well, with that on your mind, I’m not surprised you’re anxious, but the newer anticoagulants seem better all round than warfarin. My oldest friend is twenty years my senior at 88. He has permanent AF, takes warfarin and has fallen twice badly (once while walking with me - what a day that was!), but he’s had no problems except bruising.

Steve

jeanjeannie50 profile image
jeanjeannie50

Hi Karendeena. I understand totally how you feel with your heart bouncing around at night. Mine used to do the same and I used to think I'd be found dead in the morning, but here I am after 17 years of AF, still here and feeling much better. The following are some tips for stopping AF when you have an attack. I've collected them from this forum over the years that I've been a member:

I am a therapist in private practice for over 20yrs.One of my therapies is yoga based. Having quite an accurate knowledge of anatomy, neurology and physiology also having PAF I have found this technique helps me immensely when my heart is fluttering like crazy. Make yourself comfortable either on a bed or lying on the floor,position a pillow under you head, Raise your left arm in an extension position as if you are doing the backward crawl,Stretch as much as you can and imagine that it is stretching your heart muscle...I bend my arm and position my hand under my head palm upwards.. Stay in that position for as long as you can or until the fluttering subsides...At the same time I think of something pleasant.It does not matter what you think about as long as it is a pleasant thought for you. This stops my heart jumping about almost instantly....I also place my right hand over my heart area...Don't panic and just keep calm thinking pleasant thoughts....I do hope this helps you. Kind Regards.C

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As someone else who finds yoga breathing and some positions helpful, I would love to try (xxxx) suggestion, but lying down flat tends to make things worse for me. My most helpful position, taught me by a lovely yoga teacher, is based on a yoga forward bend. I sit up with my legs outstretched in front of me and a pillow under my knees, and then bend forward from the hips not the waist, with my arms relaxed but outstretched towards my ankles, and breath deeply and slowly. It's not so good on a full stomach and is more comfortable with your knees slightly apart, and I guess you have to be a bit flexible to find it comfortable, but it has proved to be a great help.

I agree with (xxxx) that staying calm and focusing on something pleasant is a must, and I've even fallen asleep like this as most of my episodes occur at night. All the best Liz

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Finally, like AV nodal reentry, some people have recurrent rapid rhythms that are infrequent and easy to self-control by using various methods to increase neural slowing to the AV node (so-called, "vagal manoeuvres"). Using these manoeuvres, one can sometimes stop the arrhythmia. These manoeuvres include:

Bearing down forcefully like you're having a bowel movement for 5-10 seconds, then slowly exhaling.in the neck while lying down for approximately 5 seconds

Placing very cold (soaked in ICE water) cloth on the face abruptly.

Coughing forcefully

Rubbing the carotid artery

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There's a yoga breathing exercise that has worked for me before. Lie on your back, bend your knees up so they are above your hips and your lower legs are at 90 degrees. Take a breath in for a count of 4 then breathe out for a count of at least 8. As you breathe out, bring your knees into your chest so you curl into a ball. When you think you've got all the air out of your lungs, try and breathe out more! Breathe in again for 4 and release your legs out to the starting position. Repeat several times. It helps to reset the diaphragm and focus should be on a good long out-breath.

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A recent suggestion has been to lie on your back and put your legs up a wall. I once did this while lying on my bed and came over very faint. It made me laugh to think if I'd died my family would have wondered what I was doing, in my nightie on the bed with my legs up the wall.

Jean

Karendeena profile image
Karendeena in reply to jeanjeannie50

Wow wow, thanks Jean I will try this x

ralft profile image
ralft

As a sotolol user for many years, I learned the hard way that magnesium as a supplement interferes with it. I take 80 mg twice a day and magnesium at mid day. That heped me a lot!!

Kennyb1968 profile image
Kennyb1968 in reply to ralft

Does magnesium interfere with Flecainide? If so that would explain a lot!

ralft profile image
ralft in reply to Kennyb1968

Sorry but I have no idea. I suggest that you Google it

Jasperpete profile image
Jasperpete

Hi Karendena, sorry to hear you are struggling. Yes I did take sotalol for a shit period after a heart valve replacement. They gave it as a precaution while recovering from the op. After 3 months the stopped it by gradual reduction. So I do not think that my reason for taking it is the same as you so in that respect other might be able to give you more relevant advice. Best wishes, Jasper

DawnTX profile image
DawnTX

I am very familiar with what you are feeling walking and trying to sleep. If you are not being listened to I would consider if possible to see someone else and get a second opinion. I thought I was crazy thankfully my doctor my cardiologist/PE assured me that what I was feeling was very real which is permanent a fib. I just had surgery three weeks ago and this week began to feel a little bit better. It takes time but first you need a Doctor Who listens to you. Prayers that you get someone to help you with what you are dealing with.

Please remember that reoccurring is unfortunately common. There is no cure yet for a fib. Stressing will only make it worse for you. Over the past four or so months I have been unable to walk more than a couple of feet without breathlessness and crushing chest pains. It would bring tears to my eyes. If you read about heart attack you would be sure you’re having one but I know it was a fib again. I had gone about 15 months after my last ablation doing fairly well. My problem was that I moved to another state meaning new doctors and waiting to see my PE/cardiologist. I did not want to go to just anyone. I survived waiting trust me if it was more frightening I would’ve gone to the ER. I had Covid just before this started so I have a feeling that’s what triggered all of this. I did discover eating a normal size meal also sent me into a fib. Before I moved I had gotten into a habit of smaller meals or snacks so to speak during the day instead of full meals and I actually lost weight and felt better. This is some thing I have tried to get back to now. It probably makes sense that a full stomach presses on your diaphragm so it won’t help the breathing situation for sure. I am not a doctor but when I find something that seems to cause my a fib I try to avoid it. my main meds now are Metropolol and Multaq for my heart I am also on losartan for BP. I am also a type two diabetic however it’s scared me being diagnosed so normally I have kept below six for the past nine years now. Going plant-based has helped with that. Since moving I put weight back on because my friend here and I have been going out to eat dinner every night. No matter what you order it is still not as healthy as when you make it yourself. We are both finally in a house now. It is so nice to have a kitchen again I had been living in a hotel for six months.

As I have said before I never realized how serious a fib was, you heard about it but not that much. A major part that scares me is how open you are to stroke if not treated properly. In the past year they keep showing the commercials called no time to wait. There is also a website with that name. It has brought to the forefront just how serious afib can be.

Three weeks ago I had Vein of Marshall and I believe another ablation along with it. It is a new procedure only a couple of years old at least the new revised one. Last week I thought I was a failure and was very depressed. I decided to keep on pushing and reading more. They did not consider failure until three months and possibly 6 to 12 months I could be a fib free. earlier this week I got up one morning and realized I was not breathless and I could walk both things I have not been able to do well. One day at a time I guess. I will see my PE/cardiologist the first week of June and will learn more then.

Don’t give up and if you’re feeling down you always have us out here. I am sure you will find at least one person who has felt or is feeling like you do.

Karendeena profile image
Karendeena in reply to DawnTX

Thank you so much DawnTX

HGates profile image
HGates

I was diagnosed with AFat 34. I would get an episode every 6 months to a year, usually at night after dinner. I found them terrifying. I would panic which would make everything 10 times worse. I couldn’t walk up stairs without severe breathlessness & my heart feeling like it was totally out of control. Sleeping was impossible & the wait to see whether I would revert to sinus rhythm was always stressful. 50% of the time I ended up taking myself to A&E which was another level of stress.

After 14 years of fighting it & living in constant fear of when the next episode would happen,last year, after an episode following abdominal surgery, I decided I didn’t want to live in fear of episodes any longer - to stress about whether I was eating too late, whether I could have a second glass of wine, whether I was hydrated enough, whether a night of little sleep or a stressful day at work etc would bring on an episode - so I allowed myself to stay in AF & I have now had it full time for 13 months. It may sound strange but it’s a huge weight off my shoulders. My mother had permanent AF for 30 years until breast cancer got her & when she would tell me it didn’t bother her I was incredulous as I was so symptomatic when I had episodes & couldnt imagine living like that full time but it does seem to be the case that the heart calms down (with the help of Bisoprolol) & symptoms are not troublesome. I have found life considerably less stressful over the past 13 months than the previous 14 years - at leat where AF is concerned. PS If you read the NICE guidelines, strokes are very rare for people with AF who have a ChadsVasc score of 0 (or 1 for women under 65) & they do not recommend anti-coagulants for people in this category so although stroke risk is definitely increased with AF, the idea that everyone with AF is automatically in danger of stroke is often severely exaggerated. It’s the comorbidities that count rather than just the AF itself.

Karendeena profile image
Karendeena in reply to HGates

Thanks for your reply HGates, I am just like you waiting for the next one! How did you get to permanent afib, did you just not revert back to NSR yourself? At the moment mine jumps back (usually after a day or two) which leaves me exhausted! Is your afib slow? Only mine shoots all over the place usually with a heart rate well over 100 bpm, can't imagine keeping it like that! I was put on apixaban with a score of 1 for being female, however I have now turned 65 so I think maybe I am up to a score of 2 unfortunately

HGates profile image
HGates in reply to Karendeena

Yes mine was all over the place & a high heart rate (made worse by the stress & anxiety of having an episode). Used to feel dreadful plus my blood pressure would skyrocket. Sometimes I would revert to SR on my own but usually I would take Flecainide & Metoprolol shortly after an episode started. Sometimes I wouldn’t revert & that is when I used to end up heading to A&E where they’d usually top me up with intravenous Flecainide. I have also had 2 cardioversions. It was a big decision to leave myself in AF as the frequency of my episodes had not increased over the 14 years since diagnosis but really the stress of worrying about everything in life that can prompt an episode had been turning me into a hermit & I just decided I would be happier just living with it permanently like my mother did & may father does. In most cases the heart is far more erratic shortly after going out of SR & settles down the longer you are in AF. Also I no longer have the stress & worry of if & when I will revert. Bisoprolol works well for me in minimising symptoms of irregularity. Now most of the time I don’t notice it much. Assume you been prescribed a beta blocker?

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