Nothing simple !!: Hi everyone... - Atrial Fibrillati...

Atrial Fibrillation Support

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Nothing simple !!

booboo73 profile image
23 Replies

Hi everyone!

Nothing ever simple with my old ticker and was wondering if anyone has had similar.

Been feeling rough ... headaches and hot flushes for a couple of months and just thought I must be going through the menopause. My ticker been steady and low so I've been so happy thinking I was on the mend.

Anyway sent my ECG to the clinic as I'm on Flecainide and it came back saying I am in Flutter and Atrial Tach but only in my atria not the ventrical hence the 45bpm rate. I've been feeling ill for a while so I'm guessing I've been in this rhythm for months.

I have been told the usual not to worry and it won't kill me but I am bloody worried...everytime I stand up I have a hot flush and I'm breathless. It's the fact that no one knows what's going on as they have only looked at my ECG with no plans for future tests... Also my Atrial Tach rate was always 200+ so that will be going on in my atria so surely my old ticker will be stressed.

I don't know where to turn. I've booked a consultation with Sanjay Gupta on Tues to try and find out more...I've never heard of this normal BPM and tach/flutter before and I'm scared ...

I'm so p****d off... Lost count of cardioversions ...at least 15...and 2 ablations and it's back. I think a pace and ablate is the next and only option.

So just wondering if anyone has has similar... I'm home alone and I know if it gets worse I will be scared to go to hospital. Some good news... I'm keeping off of Google... Taught well by Bob that it only sends me more deranged ... Taken 6 years but you have finally got through to me !!

Thanks guys and hope everyone is coping and well with this situation xox

Sara xox

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23 Replies
7164 profile image
7164

Sara

Sorry that I can’t help with this but I do sense your pain and upset.

Don’t give up keep asking the questions

Do something nice if you can😬

Rod

booboo73 profile image
booboo73 in reply to7164

Thanks Rod...I know I'm quite unusual!! Luckily I have a lovely garden so I'm growing more seeds than thought possible so it's keeping my brain occupied. I baked scones yesterday but keep eating them so need to stop that🐖 xox

buddje profile image
buddje

Hi booboo

Not been on forum much.

I flutter a bit on flec.feels like vibrations mostly at night.

Its not good being on your own.try u tube relaxation music.......mindfulness and meditation good.

I have a partner living with me but as useful as chocolate fireguard with illness.

And I feel a burden....at least on your own you can decide either to rest or whatever.

Keep safe 👋

booboo73 profile image
booboo73 in reply tobuddje

Hi Buddji x

I'm mentally doing ok...a few years ago I would be causing drama at every turn. I'm on max Tramadol and mentally that numbs me which is fabulous right now!! I have learnt than seeing the beauty in nature calms me down... 3 pesky starlings were having a great time in the bird bath and cheered me up no end.

I think I'm so concerned that its practically unheard of this new strange beat so unsure how it will progress.

I'm lucky as my other half has offered many times to come and get me but I know we would be arguing ... I'm best alone when I'm stressed ... Once I get my head round it I will be ok. I couldn't imagine been in lockdown with him for months...as much as I love him I would kill him!!

Bloody hell I'm rambling.. xx

buddje profile image
buddje in reply tobooboo73

Hi booboo

Nothings simple at all.......my partner doesn t argue....just numb.

I keep having brushes with pre cancer stuff too....just going through another bleed......

Back on the trail and not certain about hospitals during virus.

Who would be a woman ?

booboo73 profile image
booboo73 in reply tobuddje

Sorry you are having such a bad time. Andy, my other half has worrying moles again... He's at the hospital next week. He's had cancer twice already so hopefully if caught early enough they can sort it. I was surprised how quick he got an appointment with the current situation. Ally best wishes to you and hope things improve oxo

buddje profile image
buddje in reply tobooboo73

I suspect the cancer docs are not busy.too many people won t go......

I am just hoping this will go away but it never does.

I have watched nearly every episode of Miranda today.....she makes me laugh

Lorlaw70 profile image
Lorlaw70

Oh I am so sorry to hear this. I had hoped you where doing ok.

Best of luck on Tuesday i really hope you get the answers and a path for the way ahead. Please let me know how you get on fingers crossed you will get some answers.

Enjoy your gardening and I hope your getting as lovely weather.

Take care

Laura xx

booboo73 profile image
booboo73 in reply toLorlaw70

Thanks Laura...hope you are doing well. Yep it's a lovely day and gonna go out in a bit and may even treat my chickens to a run in the garden. They have a big pen but it's concrete so when they get on the grass they go crazy and damage everything in sight so they have to be supervised the little buggers! Xx Will Keep me busy and stop me eating scones. Lots of love x

Contra21 profile image
Contra21

How did all this start for you. So you have thyroid issues?

booboo73 profile image
booboo73 in reply toContra21

Hope. Nope no thyroid issues at all. I had a hole in the heart when I was a kid which possibly left scar tissue which could have triggered this...but my mum and uncle had AF too. Xxx

gwyn53 profile image
gwyn53

Oh bless you.

It's not easy.

I have no answers.

Just know I'm here for a chat any time.

booboo73 profile image
booboo73 in reply togwyn53

Thanks Gwen, kindness makes all the difference ... just spent 10 minutes on the garden its way too hot here xox

jeanjeannie50 profile image
jeanjeannie50

Hi Sara, sorry to hear what's happening to you right now and hoping Sanjay Gupta can find a simple cure, or at least advise you as to what your next step should be. You're much too young to be expected to put up with this situation!

Please let us know how you get on this Tuesday.

I guess that you're aware that Flecainide can cause atrial flutter? Hence the reason we often take a dose of beta blocker alongside it.

Jean

booboo73 profile image
booboo73

Hi Jean, I've followed Dr Gupta for a while and have the feeling I can trust his opinion so think it's worth it money wise.

It's not so much the flutter that's worrying me it's the fact that even though I'm in fast flutter my heart rate is only showing 45 BPM. I have never heard of this before so makes me wonder why this is happening only in my atria? Have you heard from of it anywhere before Jean? X hope all is well with you xxo

Palpman profile image
Palpman in reply tobooboo73

Doesn't sound like you have AFib. Seems more like Atrial flutter. You would need to look at your ECG.

booboo73 profile image
booboo73 in reply toPalpman

The Ecg was looked at by my EP who confirmed Flutter+A.Tach in the Atria only xox

myrnalynn52 profile image
myrnalynn52

Sorry to hear of your Heart issues, I wish you peace of mind and a peaceful heart. With dealing with life changes with Covid , We sure do not need the tickets causing issue . Love and light ,

booboo73 profile image
booboo73 in reply tomyrnalynn52

Thanks X noticed your vizsla on your picture. I have had two over my lifetime...best dogs on the world! When and if I ever get fit I will be getting a pup.... Well saving up first!! XXX Best wishes to you too xxxx

Shcldavies profile image
Shcldavies

I can imagine your feeling devastated and really worried right now but I am sure your consultation with Dr Gupta will put your mind at rest (to a degree). I know the Medical people say that it is harmless and to a point there right but I believe if it is too sever or goes on too long it will cause other problems so I would push to see your Cardiologist/EP as only they have the details of your condition required to provide the best risk assessed treatment. I take it you on anticoagulants, if not I would see your Dr straight away as flutter (like AF) increases your risk of stroke and thus can be extremely life changing/life limiting.

Sorry I don't understand how you could be in flutter and Atrial tach only in your atria, I would have taken it to mean that your Atria is at 90 BPM and ventricles 45 BPM (2:1 ratio), just shows how much there is to learn about these heart electrics.

That said I have had similar. Flecainide put me into flutter after 3 months, its not common but usual enough for many, once diagnosed with flutter I was taken off the Flecainide and put on Digoxin. Also had a cardio version to convert from the flutter. Then remained in NSR until my ablation.

Wishing you all the best, you may need to push to get the right treatment and I would certainly prepare for your consultation with Dr Gupta, write down the questions you want answers to, otherwise you will not get the most from your consultation. Keep us all informed.

booboo73 profile image
booboo73 in reply toShcldavies

Thanks so much for the reply. I know times are hard at the moment with Covid but there seems no concern to do anything at the moment ... Hence a chat with Dr Gupta. I have already requested 2/3rds of the appointment for him to answer my questions by email and a quick chat on the phone as I know I will be bombarding him with questions and won't listen to answers!

My EP confirmed this unusual diagnosis but trying to get an appointment is so difficult. I feel like borrowing some money to see him private...as I really do feel rough but the nurse advises just to take the pragmatic approach but this isn't any life at all.

I am on the list for a 3rd ablation...should have had in done in March but I was put on the wrong list to have sedation and I need a general...twice this has happened now I could scream. But I'm on Rivaroxaban so that's one positive thing. Xxx

Shcldavies profile image
Shcldavies in reply tobooboo73

Looks like you’ve prepared for your consultation, I also had a consultation with him 2 yrs ago, please remember he is very busy so may not have the knowledge of you questions that you may think he will so it’s important that you stick to your brief. The questions are pointless if you don’t remember his answers so stay calm and methodical- easy for me to say but I do know how difficult it can be. I would keep pushing to see your own Doc as only they know enough about your condition. All the best and stay positive.

Patsy10 profile image
Patsy10

Hi,

I had both AF and Flutter for quite a number of years and previously had three ablations.

However a couple of years ago I had a new Consultant who looked at things a bit differently

and changed my meds. Flecainide & Nebivolol are the current ones along with Apixaban.

Like you I could be in the 40/48 range sometimes which made me feel far worse. He

monitored me regularly and I opted for a few private appointments with a colleague of his.

It was decided that I also had atrial tachycardia which had never been picked up previously.

Just over two months ago he carried out an ablation and since then I have felt wonderful. (Touching wood as I write this) I am still on the same meds although they will be reviewed in due course and reduced accordingly. Obviously with the current situation it might take a while for the follow ups but I have had one telephone call so far and they were happy with the situation.

Stay positive if you can even though it is sometimes is hard, you will get there eventually.

Good Luck on Tuesday.

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