1 week later...: I only posted last... - Atrial Fibrillati...

Atrial Fibrillation Support

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1 week later...

jedimasterlincoln profile image

I only posted last week about my positive news from the EP and stopping my medications....

As I write this I'm sat in CCU after being taken unwell on my night shift Saturday night. It hadn't been particularly strenuous and only the day before I'd felt energised and positive having spent the week decorating my daughter's bedroom (a few hours a day).

Resting HR was 160, so I wandered down to ED. Ended up needing to have Amiodrone IV again, as last summer, over 24 hours and if that doesn't reduce it I'll need a DC cardioversion.

I'm gutted it's happened again with absolutely no warning, only a week after my EP was optimistic and happy enough to only want to see me in 6 months time. I now have the prospect of recommencing on everything I had previously stopped.... bisoprolol apixaban and flecanide. So I'll be back to being tired and groggy more than I have been since January.

I'm missing my girls, I didn't even have the energy to hold her tonight when she visited me in CCU. My OH now has to take time off to look after the girls whilst I'm in, I'm off sick again, I am now totally uncertain about what happens next.

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jedimasterlincoln
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56 Replies
bushy2016 profile image
bushy2016

Sorry to hear....your in the best place to be looked after

Finvola profile image
Finvola

What a horrible slap in the teeth for you and your family, jedi - especially when you were feeling on top of this miserable condition and so well.

It’s important to remember how optimistic your EP was and there must have been a good reason for that optimism.

I really hope this is a one-off - maybe too much bedroom decorating and reaching up?

Try to think good thoughts and go one step at a time.

Very best wishes.

jedimasterlincoln profile image
jedimasterlincoln in reply to Finvola

I'm hoping its just a blip and not the flutter, having masked something, being cured and letting it loose.

I really didn't push myself decorating, I only did an hour at a time then a break for 3/4 hours to let areas dry and didn't even do school runs back end of the week because they were shut because of snow!

Elsieclarke profile image
Elsieclarke

What a dissappointment ! Here’s hoping your EP can work out why and if its possibly a one-off. Sounds like you have lots going on with the little ones too. Hope things settle soon.

Oh dear...I'm so sorry you're having all this back again .

I have had the same problem in the past.....thinking how well I felt, started to tackle garden or decorating and back comes the dreaded AF. Amiodarone iv didn't work for me so it was dccv.

For what its worth, I wonder if you are taking magnesium? I am on the anti arrhythmic drug Disopyramide which does help but since I started taking Mg taurate I've gone 10+ months without AF which is a record for the past few years.

Has pace ablate been mentioned. I suppose you are much too young for that though .

I do hope you get sorted soon and back to your family.

Sandra

brit1 profile image
brit1 in reply to

how much/which brand mag taurate do you take?

in reply to brit1

I am taking Cardiovascular Research Ltd Magnesium taurate vegetarian capsules 125mg x2 per day.

Mag taurate is a bit difficult to find and many on this site use Mag citrate to good effect. This is the only one I can find that is a proper capsule as I find it very hard, if not impossible to swallow the large capsule shaped tablets...they get stuck on my throat.

I have been taking these , with a short gap, for about 3 months now .

brit1 profile image
brit1 in reply to

yes that is the brand I use, I take 2 in the morning and then 2 Pure brand mag glycinate in the evening

Not what you wanted to be telling us and not what we wanted to hear, but please be hopeful it has been just a wobble.

pottypete1 profile image
pottypete1

Sorry to hear it has reared it’s head again, just when you were feeling optimistic.

I can’t remember if you have had a cardioversion before but if not it is often very effective and will at least hopefully return you to NSR whilst they work out the best solution.

My thoughts are with you. As you may recall I have had 7 ablations and circa 20 cardioversions so I am only too well aware what a false dawn feels like.

Good job tomorrow is Monday when hopefully your EP will be around to assess the situation.

Take care

Pete

jedimasterlincoln profile image
jedimasterlincoln in reply to pottypete1

Thanks Pete, this is my 10th and first for quite some time.

meadfoot profile image
meadfoot

So sorry to hear this especially after your recent post where all looked incredibly good. Beyond disappointing and clearly you are gutted after all you have been through.

We never get used to the condition and it is desperately draining to be off track like this especially as things seemed on the up. Here's hoping your EP can give you some help to get things in order again. You are strong you will get back on top in the meantime hold onto the good stuff in your life and fight your way to normality again.

You can do it. Tomorrow is another day you will prevail, honestly you will. X

Jollies profile image
Jollies

So sorry to read this. Chin up, tomorrow is another day xxxxx

dedeottie profile image
dedeottie

What a blow for you Jedi. It is impossible not to feel deflated in your situation. I always think things feel worse when you dont know what is happening and what the next steps are,so fingers crossed for some positive next steps from your EP as soon as possible. X

Mike11 profile image
Mike11

DId you just stop these drugs all at once ? You're supposed to wean yourself off any beta-blocker slowly

jedimasterlincoln profile image
jedimasterlincoln in reply to Mike11

In all previous instances (4) there has been an element of titrating one or more tablet down. On one occasion it was the Dronedarone down and on others it was the Bisoprolol from 10mg to 5 to 2.5 to 1.25 over the course of a couple of months.

On this occasion the post discharge plan was to stop all meds one month post-procedure. So I did.

When I saw EP last week, I confirmed this is what I had done in January and he was fine with this because I had followed his instructions, no "oh you really should have gradually reduced them"

I'm still irregular this morning, 8 hours of infusion left but the lower numbers of the irregular heart rate on the trace are in the 90s whereas all yesterday they were the 120s, and I feel slightly less bad for having more sleep last night than in the whole of the last 24 due to the night shift.

However I did get woken up every hour because when I'm asleep my BP is under 90 systolic so it triggers the requirement for regular monitoring when you couple it with the heart rate......

Sorry to hear about this.

Are there any changes that you could make in your very demanding and full on lifestyle that might be helpful? Is your current specialism one of the more stressful ones?

jedimasterlincoln profile image
jedimasterlincoln in reply to

It is yeah but I don't know anything else, I think switching would cause me more stress. I can do the job with my eyes shut, it's one of the small areas of stability.

At the turn of the year I dropped my hours to part time, which equates to two long days (12 hour days) spaced apart and based around my OH three long days a week.

I have been consciously not trying to do everything and had felt more chilled at work letting other people support me rather than me support them. I really don't want to take a step towards another speciality or outpatients in particular as I'd find that very under stimulating!

jedimasterlincoln profile image
jedimasterlincoln in reply to jedimasterlincoln

Oh and I had already been losing weight albeit slowly, limiting my caffeine intake and still refusing to take up smoking ;)

JaneFinn profile image
JaneFinn

Oh Jedi :( I’m so sorry to hear what happened. What a kick in the guts :(

Hoping this really is just a blip and that you’re back to normal and home soon, with helpful reassurance from your EP. X

Buffafly profile image
Buffafly

I'm so sorry, hoping to hear better news later ....

songbird74 profile image
songbird74

Just a thought I find nebivolol leaves me less groggy than bisoprolol and works as well but I hAve

To fight for it as it is more expensive

Worth knowing, I may throw that name at them.

Mike11 profile image
Mike11 in reply to jedimasterlincoln

Bisprolol almost killed me as I'm asthmatic whereas both verapamil and nebivolol have allowed me to lead a normal life. I'd certainly try that argument if I were you if you need to stay on the meds.

CDreamer profile image
CDreamer

Oh no - I’m so sorry Jedi. A real bummer. I do hope it is just a blip for you.

So sorry to hear this - I really hope it's a one off!

GrannySmithgs5 profile image
GrannySmithgs5

A random thought Jedi , for a couple of days following my allotted night duty I would feel quite disconnected. My G.P. explained night duty has the same effect on the body as jet lag . Now I have diagnosed AF I wonder whether the change of routine for those nights was creating havoc pushing me into AF . Xxxxxxx

jedimasterlincoln profile image
jedimasterlincoln in reply to GrannySmithgs5

I hadn't slept too well all week, but I feel bad for the OH doing all the night time get ups and as I was off the meds I was feeling "better" in the daytime and able to take on some night time feedings, but I suppose this is evidence I don't cope well with disturbed sleep patterns.

gutted for you. I hope you get back on your feet again soon.

I have had to start taking all the stuff I had not taken for 6 months.

I can honestly say I feel awful, tired, depressed and on edge.

jedimasterlincoln profile image
jedimasterlincoln in reply to

I can't help but feel bad for my OH having to put up with this again and the kids.

in reply to jedimasterlincoln

Like wise, i've gone from an active 50 year old repairing cars for fun, DIY, all the house work and looking after kids to being a shell of a man barely able to drag myself to work.

Thanks all for your kind words and the support you always come up with on my low points. After being told I'm fat by the overweight Cardiology consultant I've never met he's listed me for DC cardioversion this afternoon.

in reply to jedimasterlincoln

A good old re-boot

goo.gl/images/qdxZs6

Finvola profile image
Finvola in reply to jedimasterlincoln

He should know, jedi - made me smile. 🙂

All the best with the cardioversion.

Tmax71 profile image
Tmax71

Aww that’s a shame, hope you feel better soon. I just can’t get out the bit at the moment. X

Tottytotty profile image
Tottytotty

Wish I knew what all these abbreviations meant. Ccu- ep. Etc

jedimasterlincoln profile image
jedimasterlincoln in reply to Tottytotty

CCU - Coronary Care Unit

EP - Electrophysiologist usually different from a surgical cardiologist deals with electrical function in the heart as opposed to physical causes like valve problems

Tottytotty profile image
Tottytotty in reply to jedimasterlincoln

Thank you and what is ablatio

jedimasterlincoln profile image
jedimasterlincoln in reply to Tottytotty

Ablation is where they enter the heart with small wires called cardiac catheters (not to be confused with urinary catheters) in order to effectively burn parts of the heart tissue to prevent dodgy or increased heart rates/rhythms being produced. Usually done under sedation and commonly referred to as ablation therapy as it sometimes takes more than a couple of procedures to isolate all the problematic areas.

Tottytotty profile image
Tottytotty

Learning a lot here. Thanks

jedimasterlincoln profile image
jedimasterlincoln in reply to Tottytotty

It's no problem. There are usually a few "abbreviation" posts that come up occasionally, but often get lost in the grand scheme of things, but there's no such thing as a stupid question so it's always good to ask on people's posts if you're not sure.

12cupcakes profile image
12cupcakes

So sorry that your heart is not cooperating. Hopefully it is just a one time incident and you will be back to feeling great again. My thoughts are with you

Janith profile image
Janith

I’m surprised that you weren’t slowly weaned off of your medication. I, personally, would never abruptly stop this type of medication. In spite of what doc suggests.

mrsg46 profile image
mrsg46

Gutted for you, Jedi, but really hope this will prove to be just a blip and you find a way through this and out the other side. I hope you get some positive answers from your EP as to what happens next. All the best, Kate.

Well I had DC cardioversion, one shock of 150 Joules. Home later (hopefully soon) and recommenced on Bisoprolol Flecanide and Apixaban! And rest.

pottypete1 profile image
pottypete1 in reply to jedimasterlincoln

Glad you are back in NSR. Bisorolol & Flecainide have been my stable diet for years. Came off Bisoprolol last year only because my conductivity is shot and I was going too slow. Hopefully it will control you for much of the time.

I hope you are feeling better now.

Pete

Glad you are back in NSR. Rest well

Sportfix profile image
Sportfix

So sorry you’re having to go backwards a bit. I had second ablation at the end of October. It was a 3D mapping one, which took several hours under very mild sedation, but so far has worked & my heartbeats were complex. I’ve just “pottered” ever since, which is a world apart from my normal gym, cycling, swimming & pilates exercise routine. Just been for a 4 month check with my EP. Thought he’d take me off Bisoprolol, Flecainide. But.......he said he’d like me to continue with them for another 6 months, and then gradually wean off them. My Sinus mode, blood pressure, cholesterol levels, everything normal but he says 1 year of this regularity is advisable before reducing medication. My hair thickness, and like you, my zombieness will stay with me, but this is preferable to bad heartbeats for me. Hope you get sorted this time. Let us know how you go.

cuore profile image
cuore in reply to Sportfix

" Hair thickness?" Did you mean to say your hair got thinner as opposed to thicker? Mine has certainly got a lot thinner after being on all these heart drugs. If the hair can get thicker, I'd certainly would like to know the drug.

Sportfix profile image
Sportfix in reply to cuore

Hi Cuore! Yes that’s right. My hair has definitely become thinner. Been back to my EP for a 4 month check after my 3D mapping ablation at the end of October & he says that he advises me to stay on the bisoprolol & flecainide for another 6 months, the gradually wean off them. Wish I could tell my hair to hang on until then. 😱 Have you had the same problem too?

cuore profile image
cuore in reply to Sportfix

I have been on Amiodarone for nine months now ( due to two ablations) and have noticed my hair getting thinner and thinner. I am also on Amlodipine which is for blood pressure, but I think Amiodarone is doing much more damage to the hair.

MRockwell profile image
MRockwell in reply to cuore

Amiodarone will do damage to your lungs and much more see "Amiodarone Toxicity" my husband is lucky to be alive. It can do damage very quickly see "Stop Amiodarone".

GordonS profile image
GordonS

Best wishes, hope things settle down for you. This AF business seems really complicated with lots of different triggers. Sadly and I don't mean this in a bad way it is almost re-assuring to hear of so many different scenarios. Stay positive :-)

Thanks everyone, I was home 930 on Monday night though have only just received my discharge summary. Discharge was identified at 1700, but paperwork still wasn't written 4 hours later. Given the hospital was on full capacity plan and discharge planning was supposed to be a priority this was frustrating (working on the floor above we're always being hounded for beds and delays are not acceptable)

Luckily I had all the medications they had prescribed at home, so I could take a bit of pressure off and give up the bed early.

It took a further 48 hours for someone to write the paperwork. I'm off work the rest of this week.

Both arms are bruised, where the IV Amiodrone went in I have a very painful swollen lump... the defrib pads have burnt me (again) but I did get free chest wax from the pads, ECG stickers etc.....

Feeling quite a lot tired, but being looked after.

in reply to jedimasterlincoln

Here's hoping all goes well for you now that you are back on some meds as well.

Sandra

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