A few questions

[Morzine]

I’ve been an afibber since May, happened in Spain on holiday. On tablets and have had a couple if normal months. After reading about some of you going on holiday and no problems I plucked up courage to go with hubby in our new caravan to Italy, not far cos we are in the alps. The week itself was lovely, but we hit a wall and damaged the caravan, almost hit another wall leaving campsite, so the journey was a bit stressful , not towed before.....got home and my cat who was going blind was now totally blind...so it’s been upsetting....plus we are looking after my daughters dogs and I’m juggling to keep blind cat away from dogs......since I’ve been home four days I’ve felt out of sorts, then yesterday I kept feeling dizzy and lightheaded then AF started in the night. I seem ok now but feel worn out.

My questions are;

I’ve nit felt dizzy befire my other afibs is this normal? Do any of you feel out of sorts before an afib comes, I can’t put my finger in it I just felt a bit tired and breathless.

I live at 3,000 feet.....does anyone else live in the mountains? I wonder if coming back after sea level affects me?....in thinking about it whrn I got home from Spain after my initial afib I felt Ill and had afib crazy’s now wonder if change if altitude does it? I asked the cardio if I could go up the ski lifts higher in winter and he saud yes.....but I never asked about changing from sea level and coming home......

I understand where the previous persons remarks Alidol feels as I’m the same....rather sad after doing so well.....but I appreciate Bob saying we have to get used to it...I thought I had got used to it but that was cos I was doing so well....I haven’t git used to it coming back......and now feel my confidence I built up is like a fragile house of cards......

While I was away although it was nice we ate out twice and both times I felt bervous and on edge in the restaurant,,,.no reason but I just feel vulnerable, it bears no logic and no resemblance to the old me at all.....I can’t even talk myself thru these fears......do others feel like me? I don’t know where the old me has gone..does that make sense?

Sorry for rambling on I feel quite alone in this sometimes being in France, we moved here because all my kids and grandkids live here, I speak french, but it’s nit the same as talking in English about all this......

[Hidden]

Hi,

When I developed AF I had no cardiac symptoms at all. None! I just felt as if I was going down with flu. Then I felt worse with flu and began checking my blood pressure. My BP behaved so erratically and trended downwards I went to my GP and within 9 hours of onset I was diagnosed with paroxysmal AF and treatment started.

My other thought is that having AF over such a short time period ( since May) is not enough time to get used to it. My view is that 1 to 2 years is more like it to get this condition to reveal itself in all its sordid glory! I recommend keeping a diary and record ( however briefly) how you feel when an event occurs. It may possibly change over time while it settles down.

Good luck.

John

[Morzine in reply to Hidden]

Thanks for that John, I think I was feeling oh this is good the tablets are keeping it at bay.....thought I was a lucky one I guess.....so this is a reality check and a bit of a blow confidence wise.....did you loose confidence goung places? I’m feeling half my old self even when normal.

[doodle68 in reply to Morzine]

Hello Morazine you say...

''ive nit felt dizzy befire my other afibs is this normal? Do any of you feel out of sorts before an afib comes, I can’t put my finger in it I just felt a bit tired and breathless.''

I think we all have our own symptoms for AF some we share with others , I have often felt dizzy with shaky legs , faint, clammy and breathless. I also get an unpleasant sensation in my neck/throat which is I understand connected to the carotid pulse. I used to get a feeling of acute anxiety but don't get that now as AF no longer makes me anxious

Many of my symptoms apart from the pounding irregular heart beat have lessened in intensity over time as have the frequency of bad episodes . I guess the beta blockers and lifestyle changes are working well for me at this time.

[Morzine in reply to doodle68]

I felt very clammy and wobbly too.....I think it was a shock I stupidly thought the flecanaide, bisoprolol and apixaban had stopped it.....

[doodle68 in reply to Morzine]

Hi Morazine That will teach me to say anything is 'working well' , I have just gone into Afib while washing the kitchen floor, the full works this morning dizzy and breathless

I have a sort of chest infection just now and think maybe that may be the cause.

Still on the plus side I have captured the episode on my Kardia monitor this time so have a record of it.

It's a begger isn't it, I was just going to mow the lawn.

[Morzine in reply to doodle68]

Oh heck it’s catching!.....I’ve just ordered one of those kardias today as I onky have a pulse checker you put your finger in and it goes all over the place I’m not sure I get the right reading......sorry you are in afib hope it doesn’t last long.....I’m feeling a tad brighter now.....

[Tapanac in reply to doodle68]

I get your symptoms too. Especially the neck one sometimes this is before an attack. So what is the carotid pulse please?

[doodle68 in reply to Tapanac]

Hi Tapanac it's the pulse over the carotid artery in your neck at the side of your windpipe. If you check that pulse when in AF, like the pulse in your wrist it will be irregular. I get a kind of ache in my throat during AF, strangely it is similar to the feeling I had as a child when trying to hold back crying.

[Tapanac in reply to doodle68]

Aaah I get a sort of dry stinging sensation. Hard to explain. Yes and it does feel irregular. Hate all this. Hope you feel ok

[Hidden in reply to Morzine]

Hi Morzine,

At no time did I ever loose my confidence. Actually, it was a bit the opposite, part of my character I guess - I found the whole thing laughable. Bit of a joke. In fact when the Consultant first informed me of what i had I burst out laughing and he gave me a short sharp rollicking, saying this is no laughing matter.

I was later to learn he was right.

After 8 and half years now I consider AF (in all its manifestations) as 'ALL THINGS TO ALL PEOPLE'.

Mine started off feeling like flu. Then many months later I identified the onset of AF with food I'd eaten. I consulted a Nutritionist and as a result of changes to diet I managed to go 3 and half years without an AF event. Then in Feb 2018, I woke up about 02.00 am with my heart banging away and I was back in AF ........... not a food issue but rather sleeping on my left side. HR hit 149 and lasted 5 hours. Blood pressure took something like another 21 hours to return to normal.

All things to all people, EVEN, all things to one person.

At the time of diagnosis I was a bus driver. I was off work for 4 months - 65 at the time. I am now 73 and have carried on bus driving. I have to have a medical annually for DVLA to renew my PCV driving entitlement. I now drive a bus in the tourist industry which includes handling passengers baggage and work between 30 and 45 hours a week.

Hope that helps.

[Morzine in reply to Hidden]

Goodness me, well you’ve done very well and still working a demanding job. Yes I guess it’s a huge unberella of afib treating us all a bit duferent.....it’s still a learning zone for me.....I hate it...

[Morzine in reply to Morzine]

Thanks for mentioning the food thing john I hadn’t thought about food just the list of triggers everyone says to avoid....I’m wondering now about curry.....

[Hidden in reply to Morzine]

The link is the vagal nerve. It's like an information superhighway between the brain and the heart and the digestive system. It also impacts on other organs too - but heart and digestive system are the significant organs. Suggest you Google it.

My food intolerances are many and wide ranging from gluten through to runner beans. So for me, my personal mantra is calm the diet = calm the heart.

John

[Morzine in reply to Hidden]

Where is this vagal nerve?....oh I will google it and find out!

[hock217 in reply to Hidden]

I wonder if the exercise/weight lifting of bags is strengthening your heart muscle. So many perspectives to consider. Before being dx with SVT, I had a stress test, treadmill etc. Cardiologist found my heart muscle was strong and said that was "good" Problem was an extra node causing blood to spin around and not move on. High risk of stroke or heart attack. Had it ablated. Was so tired n Rx caused fatigue. There is a cardiac rehab in the area. Thinking of asking cardiologist to do another stress test and refer me to the rehab twice weekly. Your job may be helping you.....ask MD.

[Hidden in reply to hock217]

Hi,

Yep, that's an interesting thought about exercise at work and heart muscle strength. Hadn't considered that.🙂

[momist in reply to Morzine]

I don't believe that the tablets can keep it at bay. The anticoagulant is to stop you from having a stroke as a consequence of AF, and the beta blocker is to prevent the heart rate spiralling to extremes when you get AF. Nothing I know of stops it happening.

[Morzine in reply to momist]

What’s the Flecainade for? I thought that was to stop the attacks, or minimize it?.........awe so much to learn.....

[Tapanac in reply to Morzine]

Flecainide is an arrhythmia drug and keeps the heart in rhythm. I found it wonderful until for some reason my EP stopped it and then wham..not well again

[Hidden]

Hello Morzine! John is right ...having had AF for such a short period of time is just not long enough to get used to it.

I lost confidence straight away and it took some time to regain it. I certainly found it a life changing situation . You will get used to it and acquire coping mechanisms but it will take time.

I had 2 young children at Junior school to look after and ferry about as husband was working hundreds of miles away in the Highlands so had to carry on as best as I could.

Here I am 25+ years later, 73 years old, grandmother of 2 and about to celebrate Golden wedding and AF is still here ! It's a part of me but that's the way it is. Frankly I never thought I would make it this far! ( awaiting ablation no 4 )

In answer to your earlier question about pre warning signs of AF. I find this variable . Sometimes it comes on completely out of the blue during the day. Other times , usually at night I have uncomfortable feeling in my stomach which heralds very fast rate which flips into AF.

Hopefully you will soon be able to put this condition to the back of your mind but as we have said it is early days so don't be too hard on yourself . AF may be IN your life but dont let it BE your life.

Best wishes

Sandra

[Morzine in reply to Hidden]

Thank you Sandra, I think I’ve thought I’d got away with it with the tablets.....silly me, I wish I felt more confident about it, but I see from everyone it’s early days with me.....I’m so glad this didn’t happen in Italy, did wonder if it would after we crashed the caravan into a wall....

I felt funny in my stomach last night in fact I wondered if I’d got an upset stomach......oh dear.......

[Hilly22]

Hi, and commiserations! So sorry to hear how you're feeling, and yes, it all makes sense to me. After my diagnosis in April, I naively thought that the Bisoprolol I was prescribed was a magic wand and that because my arrhythmia didn't happen for weeks afterwards it wouldn't happen again. How wrong I was. Now trying to get used to the idea that it's with me for life, and telling myself that for every tear I shed over it I'm one step closer to accepting and learning to live with it. Where I used to skip posts on here about ablation I'm now starting to read them! I'm taking reassurance from John's reply about the time needed to condition ourselves to having AF.

Apart from my husband who's my rock and understands the nature of AF and SVT, I'm finding it hard to convince my nearest and dearest how debilitating it can be and why I'm not up for everything anymore.

Can't help with your question re. altitude but can tell you that my episodes often follow stomach discomfort.

[TamlaMotown in reply to Hilly22]

I totally agree with you Hilly about convincing family & friends how debilitating this dratted AF is. That's why this forum is so important because there's understanding here & it helps enormously 🤗

[Morzine in reply to TamlaMotown]

Exactly Hilly22 and tamlamowtowm ...it’s hard.....”my best friend said to me quite annoyed, “well it’s very common lots of people have it” when I cancelled her visit cos I had just got it and felt awful...she clearly though I was overreacting....just cos lots of people have it it doesn’t mean it’s a walk in the park. My husband gets it.....not sure my family do as they haven’t bothered to look it up or listen proper,y when I initially told them...I guess life’s too busy eh.....this forum is a saviour.....

[TamlaMotown in reply to Morzine]

Because it's 'not going to kill you' they assume it's nothing to worry about it but it's a horrid condition with horrid symptoms & so unpredictable. I wouldn't wish it on anyone 😝

[Hidden in reply to TamlaMotown]

Couldn't agree more, TamlaMotown. The worst for me is the flipping back and forth from feeling great to feeling awful. The not knowing when an episode will end. Taking medication to end it, then that doesn't work. Lately I'd pretty much like to slap all the doctors, too.

[Storyjo1 in reply to Hidden]

Slap the doctors - oh, I like that! So me!!!

[Hidden in reply to Storyjo1]

I just mean mine....not the wonderful Dr. Gupta!

Felt like I was talking to a used car salesman with Mr. On-Call Doc the other day. 😂

[Storyjo1 in reply to Hidden]

Oh, def not dear Dr Gupta!

[Hilly22 in reply to Morzine]

So true Morzine. Sorry to hear that about your friend - I know exactly how you must've felt. It was implied to me the other day that my condition could be psychological ... I wish! Hoping they meant physiological x

[Hilly22 in reply to TamlaMotown]

Thank you TamlaMotown, I so agree with you. I'm not normally one for forums but this one is in a category of its own, and I'm sure it's saved my sanity! Big 🤗

[Finvola in reply to Hilly22]

Hilly - I don’t mention anything about my condition, except to carefully chosen people. My main fear is my reaction to the gormless person who would reply with something like ‘oh I have that all the time but I just ignore it’. 😩

[Hilly22 in reply to Finvola]

Thanks Finvola, good point. My sister said just that to me! I don't mention it except to very close friends and my family 😢. My mother said its nothing to worry about, that her mother (my grandmother) had it (many years ago!) and the doctor told her that it won't take a minute off her life. I said "maybe it didn't but she had so many TIAs that the last ten years of her life were non-existent" x

[TamlaMotown in reply to Hilly22]

Aww that's so sad Hilly 😢

[Finvola in reply to Hilly22]

Really sad Hilly. My mother had ‘wee palpitations’ and what I suspect was a TIA but it was the 1960’s when not much was known about heart arrhythmias. In that circumstance, we are much luckier.

[TamlaMotown in reply to Finvola]

Just brilliant Finvola lol 😂

[Hidden in reply to Finvola]

Wise words, Finvola! I've been in an episode all day and ran into neighbors and made the mistake of simply saying I've been in AF all day. They know me, even helped me out after my ablation, but didn't really say anything. That's sometimes harder for me. Better than hearing something stupid or malicious I guess, but there's a dismissiveness to it that isn't easy to take. You reminded me that it's better to just not tell certain people anything about it.

This forum is a godsend.

[Morzine in reply to Hidden]

i Think some folk think it’s a one iff and you’re over it....

[Hidden in reply to Hilly22]

Hi Hilly,

Do remember, its your heart, its your life and never be afraid to be 'apparently anti social', if your body is telling you to slow down, to stop, to rest, to chill ......... then do it. Nearest and dearest don't count I'm afraid.

Listen to your body ..... body knows best.

John

[Hilly22 in reply to Hidden]

Thank you for your wise words John, I'll remember that

[Kaz747]

Hi Morzine

Firstly, I take my hat of to you, travelling around Italy with a caravan. I was a nervous wreck being a passenger in our tiny hire car last time we were there 😳. I understand your loss of confidence. I’ve had issues with SVT for 2 years but things have been quite bad for me since April with atrial flutter and atrial fibrillation (topped off with shingles and postherpetic neuralgia which happens to be in my chest and back on the left hand side). I’m an avid traveler but I haven’t been overseas for 2 years and this year I haven’t even been on a plane ✈️ so I really am not feeling like me 😀. I’m usually in control, a busy business executive and mother and wife. My confidence has taken a battering. I try to be positive but I have some days when I find myself in tears for no apparent reason. Other days I think everything will be fine. Now I’m thinking, in the words of Doris Day “Que Sera Sera. Whatever will be will be” xx

[Morzine in reply to Kaz747]

Thanks kaz747, We’d sold our motorhome which was easy to drive, to get a caravan so we’d have a car as when I started afib in Spain needing help with motorhome it became clear it’s awkward with no car....but towing is stressful! Italy is madness towing, the roads are scary yes! I understand the plane thing I’d like to go home to U.K. to see my aunts and chums but I’m scared witless to go to Geneva and get on a plane . I love travellung like you....and yes I live in fear of it happening....I’d love to visit chums and famil back in U.K. but I feel vulnerable if it starts whilst I’m staying with them....I live in hope I get my old self back in time as others do on here.....

[Kaz747 in reply to Morzine]

Where do you live now? I live in the most isolated capital city in the world- Perth, Australia (born in England). Everywhere is a long way away. We had planned to buy a caravan when we retire to explore the outback but I’ll have to see how I go over the next few years. I don’t fancy getting stuck with a crazy heart in the middle of nowhere 😎

[Morzine in reply to Kaz747]

I’m up a mountain in the french Alps. I guess I’m lucky my afib started this year and not last October as I was indeed touring Western Australia was in Perth five days...it was windy! I love Australia!! Yes you are a long way from everywhere....touring in a car I realized just how far it is from one place to another on the west coast ! Phew! We went down as far as Albany and up as far as exmouth. God imagine having crazy heart in the middle of the Nullabor...I’d loved to have done that drive but I guess I’m too old now. Don’t be put off though getting a caravan and outback.....at least everyone speaks the same language and you can communicate if things went bad......I still hope to do another trip to Aus, well I did feel positive untill this weekend floundering.....but my cardio saud to me it’s possible....which means we can do these things doesn’t it,.,it’s just the fear and the confidence loss jumps into the mix and muddles the positive up....

[Kaz747 in reply to Morzine]

Lovely place to be living and a bit different scenery to what we see here. Yes it can get windy here at times. I need to get back to work to keep saving for our retirement and the caravan and 4 wheel drive we’ll need to buy to tow it. For now I’m living one day at a time.

[Morzine in reply to Kaz747]

I imagine getting back to work is yet again about building up the confidence.....wish they had a pill for that on top of all these other pills eh,....

[Fastbeat in reply to Morzine]

Dont give up hope.I have just booked ticket to Adelaide for January,i wont let AF rule my life,ive had AF for about 25years i will be78 yrs old in November, and i will be travelling alone my daughter will be waiting for me in Australia.For all of those years ive had paroxymal AF, but that has now changed and been diagnosed as persistent AF in the last year. I just ttry not to let it take over my life, i know its not easy,but look forward to the good days and do whatever you can and rest when you cant. Jane

[Hidden in reply to Kaz747]

Lucky bugger ! Great city with a great park .... Kings Park .... and a great view ... the Narrows, the Swan River.

John

[Morzine in reply to Hidden]

Ah yes kings park ....we loved our time in Perth..

[Kaz747 in reply to Hidden]

Yes we love traveling the world but we also love coming home. We live in an awesome place.

[Morzine in reply to Kaz747]

My cousin Kim lives in Perth she loves it. We stayed the other side of river and got a ferry across each day, it was so nice and so out doors with everyone at weekends having family and friends time along the river....let’s hope we get to go travellung again eh.....I can’t imagine a long haul flight right now but others in here have dine it, so it can be done.....

[Kaz747 in reply to Morzine]

Yes, my EP is hopeful I’ll get back to good health- I’m having an ablation Friday week so if that goes well I should be right (after my recovery period). I’m eating healthy, avoiding alcohol, exercising daily and trying not to stress (although the lack of income is a stress in itself). 🤞🏻🤞🏻

[TamlaMotown]

I feel exactly like you with the no confidence. It really knocks you for six. I was only diagnosed in April so I agree with the others saying it's not long enough for us to come to terms with it. It's quite distressing to have an AF episode & I still live in fear of it. Hopefully we'l feel like our buddies on here further down the line. Fingers crossed 🙂

[Hilly22 in reply to TamlaMotown]

Crossing my fingers with you x

[Morzine in reply to TamlaMotown]

Let’s hope so eh....it is encouraging......

[IanMK]

Hi Morzine. I’m sorry to hear you feel so down.

One of things that can be said with some certainty is that people are affected in different ways and to different extents. In my opinion, the first and one of the best things you can do is to work on ridding yourself of the anxiety. If you can accept your AF as the new ‘normal’ and reduce other sources of stress you can then concentrate on resolving the unpleasant sensations that you experience when AF strikes. Start by considering any lifestyle changes that may be appropriate and other triggers to reduce the occurrence of the AF sessions.

It’s likely that you are adversely affected by your medications, too. It is generally said that AF begets AF; it will likely become more frequent. If your quality of life with the effects of both the AF and medication side effects is poor then an ablation is a possible option. It is said that the likelihood of success is higher if the ablation is performed sooner rather than later. Perhaps you could ask for a referral to an EP.

I hope the ‘old you’ reads this and that it helps put things into perspective. As Roosevelt said: The only thing to fear is fear itself.

Take care and best wishes.

[Morzine in reply to IanMK]

Thank you IanMK, wise words and thank you, I’m feeling a tad better and calmer this afternoon, I know i need to see this as my new normal ....but when I was feeling normal I forgot I had this and stupidly really thought I was protected by the tablets.....I’ve stopped alcohol, caffeine, losing weight.....I thought I could have the odd glass of wine but that worked out a no no.....I’ve been stressed since Italy so think that’s started this......the cardio has got me an appointment in October to see the cardio that does the ablation...they don’t seem to call them EP here in France .....I’m told it’s for an assessment....any idea what they do as an assessment?

[IanMK in reply to Morzine]

Basically, the assessment will be to see if you are considered to be a suitable candidate for an ablation, bearing in mind the impact of your symptoms and medication on your Quality of Life, their assessment of probability of success and risks. I imagine they will also consider your attitude to risk, your expectations and, perhaps, your mental state.

My EP reviewed my cardiologist’s assessment (including test and procedure results) did another ECG and then began a discussion around the above.

[Morzine in reply to IanMK]

Thanks IanMK, I had no idea and I have to go mikes away to Lyon, 3 hours away if fact, wondered if I’d be there all day, so it’s more of a discussion and ecg......thanks

[Morzine]

Yes fingers crossed eh!

[Finvola]

Hi Morzine - yours is the first post where I’ve seen someone mention altitude and AF. Although I don’t live anywhere near the altitude that you do, I always felt very ill indeed going downhill in a car - a couple of side roads from our house are spectacular and very steep.

Until I started Flecainide, I didn’t drive myself but sat with closed eyes, telling my husband to drive very slowly. Once I took Flecainide daily, the strangeness went away. I assumed it was something to do with a rapid change in air pressure.

I hope your episode is a one off - the caravanning sounds a bit stressful! We used to do massive driving holidays across Europe and I always said I needed a holiday to recover from the holiday. Keep well.

[Gingerpuss in reply to Finvola]

Hi finvola I was diagnosed in June last year with af although I have had an enlarged heart for about 10 yrs now, I had an ablation all those yrs ago but it’s not possible to have 1 now I am now on amiodarone 😡 nasty tablet & I also take apixaban to thin the bloods , my af usually starts just as I’m falling asleep 😴 or wakes me up at night it has got me down but it won’t beat me I usually fly 3 times a year last year I had an episode that started at the airport on way home, yes it scared me but all I wanted was to get home so I boarded that plane ✈️ it was just a four hr flight only telling my friend that was with me as I don’t think they would have let me board 😊. I didn’t think I would ever fly again but 3 wks later was up there again without any problems it’s like falling off a bike you need to get straight back on. I’m now looking forward to flying again in 2 wks off th Cyprus for my sons wedding hope your confidence comes back very soon 😊 best of luck

[Morzine in reply to Gingerpuss]

Wow , maybe I will get on a plane one day....

[Finvola in reply to Gingerpuss]

Thanks Ginger - once Flecainide started to control the rhythm, the strange feelings went away, although I’m still very sensitive to air pressure and where I live we get inversion layers quite often - which don’t help with breathlessness.

[BobD Volunteer]

Sorry been out since sparrows f--t this morning but yes you need a lot more time to get used to things if one ever does. MY feeling is that once one starts to understand oneself and your own brand of this mongrel called AF things do get easier. Not much to add to what has already been said. AF is a long journey

Oh yes and altitude will affect your AF. Anything which makes your heart work harder can do this.

[Morzine in reply to BobD]

Thanks bob, I’m beginning to see this is a huge unberella of afib with lots of duferent things in the mix...I’m sure the altitude affects me when I come back to it........I sajd to the cardio about altitude and he shrugged and sajd I’ve client worse then you in morzine , then sajd well avoid the inclines...everywhere an incline here...

[Morzine]

I do wonder if it’s change if air pressure .....

[Hidden]

There is a comment here on Afib

and altitude from the Texas Heart Institute which you may find interesting:

texasheart.org/heart-health...

There is another comment from a-fib.com here:

a-fib.com/faq-how-does-high...

[I don’t know who A-fib.com are, but the Texas Heart Institute should be very reliable]

Afib can generate lots of anxiety, particularly if its perceived that the symptoms change or worsen. I would advise discussing the new breathlessness symptoms with a doctor to get some bearing on what the problem might be.

[Morzine]

Thanks for that samazeuilh