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back in AF

Suesouth profile image
75 Replies

back in AF early hours of this morning, PIP taken,(flecainide). Not worked - never does, but thought I would try again! Cardioverted in October, so didn’t think it would start up again so soon! Don’t want to go to A&E but will give it a few more hours to see if it stops!

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Suesouth profile image
Suesouth
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75 Replies
Jalia profile image
Jalia

My sympathies. This is just how it happens with me. Are you very fast ?

Suesouth profile image
Suesouth in reply toJalia

up and down. 132, 120 but I have the shakes this time and feel like I’ve been kicked in the chest!

Jalia profile image
Jalia in reply toSuesouth

I get the shakes to begin with and then they subside unless I get towards 200. I'm assuming that you're practising slow deep breathing. Do you take Bisoprolol? Thus is always given first in my A&E for AF and I usually start it off at home as a PIP.

Suesouth profile image
Suesouth in reply toJalia

up to 145 now

Suesouth profile image
Suesouth

yes Bisoprolol, rivaroxoban,candesartan, flecainide twice a day, and taken 100mg as PIP . Last time nothing would stop it, only the cardioversion, I’m on list for ablation!

Jalia profile image
Jalia in reply toSuesouth

Just the same for me Sue. I had 23rd dc cardioversion 3 weeks ago after 2 nights in CCU. Take care. You know what you have to do and what is right for you.

J x

Suesouth profile image
Suesouth in reply toJalia

thanks

PeterJemmett profile image
PeterJemmett in reply toSuesouth

I've been told there is a long waiting list for ablation, do you know how long you will have to wait?

Suesouth profile image
Suesouth in reply toPeterJemmett

I’m having a pacemaker today and possible ablation in new year!

Gumbie_Cat profile image
Gumbie_Cat in reply toSuesouth

So glad to hear that they are sorting this so quickly. All the best for the procedures. Take it easy.

Karendeena profile image
Karendeena in reply toPeterJemmett

I am told 12 months at least, that is in Leicester in the UK

Sixtychick profile image
Sixtychick in reply toKarendeena

I’m on the list for Glenfield in Leicester. Who’s your Consultant there.?

Karendeena profile image
Karendeena in reply toSixtychick

Hi Sixtychick, yes my EP is at Glenfield although I see him.at the spires as he is hard to get in to see as he only runs a clinic every 2 months now and the wait on the NHS was impossible. He is Professor André Ng. On his NHS waiting list but only just as at 18th November. Due to see him in March. Glenfield has some of the best heart specialists in the country I am told. Who are you under?

Sixtychick profile image
Sixtychick in reply toKarendeena

I’m under Dr Sandilands at Glenfield.

We used to have private health insurance when my husband worked, as it was paid for by his company, but we lost it, when he retired. Too expensive for us at our age to continue it. I do miss having it though. You didn’t have to wait for months/ years, for any treatment.

Karendeena profile image
Karendeena in reply toSixtychick

Hi Sixtychick Dr Sandilands and Prof Ng share the same secretary so I assume they work closely together. I have to pay, as my health plan at work doesn't cover follow ups or treatments. I am still working so can stretch to a 6 monthly monitoring appointment. Are you having an ablation? I can't remember what you said

Sixtychick profile image
Sixtychick in reply toKarendeena

Well I’m on the list. They’ve increased my Sotalol, so if that keeps my AF at bay, I may not need it they said, but I have to decide, as I can say no to it if I want next year. They say it’s best to have it done while it’s at this stage, before you get it all the time, as it works better, I am scared of having it done though.

Karendeena profile image
Karendeena in reply toSixtychick

I am scared too! I think that the two consultants we are under recommend sotalol. I am on 40mg three times a day but still have a few episodes and they are very distressing, how about you? What dosage are you on and are you stable on it? I find I am always waiting for the next one to hit me. I was told the same the earlier the intervention the more successful an ablation is. Prof Ng told me if carried out whilst in the paroxysmal stage it is highly successful at the first attempt, I think he said about 90% bit if it becomes persistent it drops to around 60% (I think).

Sixtychick profile image
Sixtychick in reply toKarendeena

I’m on Sotalol too. I started on 40mg twice a day, then 60mg, now I’m on 80mg, it seems to help. I’ve read it’s better to have an ablation when it’s paroxsysmal AF, so let’s hope they’re right. I’m not that good at lying still for hours, so not sure how I’ll get on and I’m quite active, so it’ll be difficult to have to take it easy afterwards.I usually have to go to A&E when I have an AF episode, as my blood pressure goes high and it feels really awful. It’s a horrible thing to have.

Karendeena profile image
Karendeena in reply toSixtychick

I sit it out even though I feel awful. My BP goes all over the place but mainly on the low side. I feel awful and it wipes me out but try and stick it 😥 Which hospital do you go to as you must be quite local to Glenfield? What do they do for you in A & E? The two times I went in I was kept for 24 hours but they just monitored me and the machines I was hooked up to made me worse.

Sixtychick profile image
Sixtychick in reply toKarendeena

I live in Hinckley, so can go to Nuneaton George Eliot or LRI. George Eliot, usually monitor me and I’ve had a jab of something to bring down my BP, they don’t do much there. The LRI is better, they’ve given me drips and last time I was there in February, they were going to send me to Glenfield, for a cardioversion, but it stopped, so they discharged me.

Lesleyray profile image
Lesleyray in reply toPeterJemmett

1 year or more for me, that’s nottingham

meadfoot profile image
meadfoot

Hope it settles very soon. If you feel really poorly and have chest pain or faint or your heart rate is extremely high or low for that matter then off to a and e. The shakiness feels awful. You know your own body and how you feel so please act accordingly. Best wishes I so hope things resolve for you quickly.

Suesouth profile image
Suesouth

thanks, not had the shakes with it before, just gone up 145, in spite of PIP 3 hours ago, will take normal tabs in 10 mins and see what happens then, don’t want to go to A&E if I can help it! But I do feel as if I have a good kick in chest!….

BobD profile image
BobDVolunteer

Always best to ride these things out at home BUT if you have any chest pain or feel faint then call emergency services. Do not go to A and E without first doing that. Always worth contacting your arrhythmia nurse or your EP's secretary and explain.

Karendeena profile image
Karendeena in reply toBobD

I agree, I have always been told to sit it out unless breathless, pains in the chest etc. Sometimes I go a bit lightheaded but it passes swiftly. My afib goes on for around 30 hours but usually slows down for the last 24, still uncomfortable though

Suesouth profile image
Suesouth

waiting to see if my tablets calm it down, keep feeling light headed tho, and legs don’t belong to me🤪

Karendeena profile image
Karendeena in reply toSuesouth

Same symptoms as me when I have an episode, fills me with anxiety but I usually sit it out and I normally revert after 30 hours, difficult to sleep though

jeanjeannie50 profile image
jeanjeannie50

Sorry to hear that you have this worry Sue.

Have you tried all the things in the list of possible reverting tips that I send out? Has your BP shot up too? If so take deep breaths in and do a huff out as fast as you can. Do this about 8 times then retake your BP. Sit down (remembering to sit upright and not slumped)and put your t.v. on to watch (not the news) and do your best to take your mind off of your heart. Slow deep breathing as you sit to give your heart all the oxygen it needs.

Jean

Suesouth profile image
Suesouth in reply tojeanjeannie50

hi Jean, I ended up in A&E now have atrial flutter as well, put on drip, heart rate dropped to low, heart stopped, and had to have CpR, now in CCU in Exeter. Will see cardiologist today! One horrendous day!! Very painful where cpr was done

Gumbie_Cat profile image
Gumbie_Cat in reply toSuesouth

Yikes - that sounds terrifying! Do let us know how you get on.

Suesouth profile image
Suesouth in reply toGumbie_Cat

never known anything so scary! Heart stopped for 30 seconds, very painful now on site of cpr

Gumbie_Cat profile image
Gumbie_Cat in reply toSuesouth

Best of luck - hope you have a peaceful Christmas and healthy New Year.

BobD profile image
BobDVolunteer in reply toSuesouth

When I had cpr following arrest (three and a half minutes) they broke several ribs and I needed oral morphine for five or six days so I do know what it is like.

fairyfeathers profile image
fairyfeathers in reply toSuesouth

sending you a gentle virtual hug. Hope things settle down now , seems like you need a new cunning plan to deal with this going forward. x

Suesouth profile image
Suesouth in reply tofairyfeathers

they’ve already stopped the flec and may change more of my meds!

jeanjeannie50 profile image
jeanjeannie50 in reply toSuesouth

You poor thing, what an awful experience to have. I wonder if they've broken any of your ribs during the CPR? I know that it's quite common when they have to do that. Let us know how you get on please. I'm sending you a big healing hug.

Jean

Sniggetts profile image
Sniggetts in reply toSuesouth

Oh Sue, how absolutely horrendous for you! I am very sorry to read this.Not the best way to start Christmas, but you’re in the right place under a good team .

Sending big healing hugs your way.

Ducky2003 profile image
Ducky2003 in reply toSuesouth

Bloomin eck! What an awful experience. Hope that you are more comfortable now and they can get you sorted. Sending you best wishes.

Ang

irene75359 profile image
irene75359 in reply toSuesouth

How utterly terrifying - am so glad you were in hospital when this happened.

Snowgirl65 profile image
Snowgirl65 in reply toSuesouth

I could well have gone down the same path as you when in early October a strange tachycardia event sent my HR to 188 on my Kardia Mobile, I got ambulanced to the ER where they pumped me with drugs. After 6-1/2 hours my HR got back to normal, but at one point was too low. I imagine that may have happened to you too from all the drug combinations you were given, which unfortunately, caused your heart to stop and you had to endure CPR. Rest assured now that all's been corrected, you're back to NSR with pacemaker and ablation in the New Year. What a horrible time you've had!

Guitar335 profile image
Guitar335 in reply tojeanjeannie50

Hi Jean

I’d love a copy of your reverting tips list please 😋

jeanjeannie50 profile image
jeanjeannie50 in reply toGuitar335

Here it is, all collected from this forum over the years:

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 re-entry, 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 maneuvers"). Using these maneuvers, one can sometimes stop the arrhythmia. These maneuvers 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

____________________________________________________________________________________________

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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So, after discovering that making myself sneeze stops Afib. I have discovered another novel way to stop an attack. It involves drinking a litre bottle of water while holding my nose. It's especially effective if I experience almost panic as I can't get a breath. I don't always finish the bottle but find that's not always necessary to gain the desired effect. Works especially well if I catch an attack early. Kenny

Jean

stoneyrosed profile image
stoneyrosed

My sympathies are with you it’s a dreadful feeling. I think been anxious about it also plays it’s part, if you could relax as best you can it may help slow the heart rate down ( not easy believe me I know) hope the next set of meds work for you.

Suesouth profile image
Suesouth

yes done all the usual, to no avail! Thanks Jean

jeanjeannie50 profile image
jeanjeannie50 in reply toSuesouth

That info was for someone else who asked Sue, not you - I know you're a bit past this, bless you. xxx

bassets profile image
bassets

Oh dear, I hope you are feeling better and manage to enjoy your holidays. Best wishes.

Just feel for you. That horrible horrible feeling when you feel it rising. Everything’s crossed for you to get it sorted. Always for me Bisoprolol to slow it down then Flecainide PIP on top of daily medication. Good luck.

Hilianna profile image
Hilianna

Hi Sue How awful for you to sudddenly have all this happen to you. It must be terrifying. I hope the hospital manage to settle everything down so that you can get back home. I cannot imagine what it must feel like to have your heart stop!!!! Must be some form of heart attack? Maybe these recent events will speed up the ablation you have been offered. Fingers crossed. xx

Suesouth profile image
Suesouth in reply toHilianna

not heart attack ,heart beat dropped rapidly, having pacemaker today and ablation in new year!

jeanjeannie50 profile image
jeanjeannie50 in reply toSuesouth

Hope the pacemaker gives you a new lease of life Sue. Keep us updated please.

Jean

DawnTX profile image
DawnTX in reply toSuesouth

I just saw this I can’t wait to hear about you and the pacemaker thing that I am probably right in line behind you sooner than later. I will know more after the first of the year when I see my EP again. My first event I blacked out broke all my front teeth and then some. On the table they had to paddle me. It’s frightening to know even after the fact. I discovered I had a big rectangular rash on my chest and questioned what it was that’s how I found out what happened when my heart hit 300 and then dropped so fast. I hope I hear positive things from you about your pacemaker because right now I’m so unsure

Suesouth profile image
Suesouth in reply toDawnTX

oh dear that sound a bit scary like my episode, pacemaker didn’t happen yesterday, should be today, cos they won’t let me home until it does, in view of what happened!

Gumbie_Cat profile image
Gumbie_Cat in reply toSuesouth

Crossing fingers for today! Hope the after effects of the CPR are improving too.

Suesouth profile image
Suesouth in reply toGumbie_Cat

still very painful, but improving slowly! at least my ribs are intact!

DawnTX profile image
DawnTX in reply toSuesouth

I will be watching for your good news that you are on your way home

Suesouth profile image
Suesouth in reply toDawnTX

thank you , I’m staying in tonight cos had to have some sedation and there will be no one with me tonight, home tomorrow!

Gumbie_Cat profile image
Gumbie_Cat in reply toSuesouth

Glad it’s done!

Suesouth profile image
Suesouth in reply toGumbie_Cat

thank you!

DawnTX profile image
DawnTX in reply toSuesouth

well that sounds good I hope they got things finally planted as they needed. I am thankful I live with my cousin now I moved here a year ago and then with him back in April just before my big surgery. I loved being alone until a fib. Merry Christmas I hope you like your new present and that it works exactly like you want

Suesouth profile image
Suesouth in reply toDawnTX

thanks, best present I hope, I moved in October to be closer to my son, best thing I did!

Adalaide2020 profile image
Adalaide2020

Hi Sue. Sending all the healing hugs I can muster. You have been through the mill and all we on the forum want is for you and the rest of us guys is to be well. Cant imagine what it was like for you. You are in the best place but I'm sure the events have scared the hell out of you. I will be thinking of you young lady xx

Suesouth profile image
Suesouth in reply toAdalaide2020

thank you so much

baba profile image
baba

Best wishes. The pacemaker will stop your heart pauses, it's no fun when heart rate drops so low that you loose consciousness.

Suesouth profile image
Suesouth in reply tobaba

thank you apparent it stopped for 30 seconds, after effects were horrendous!

Snowgirl65 profile image
Snowgirl65 in reply toSuesouth

I'm in the US and read these posts later than most. I hope and pray you're out of the woods by this time, and that the CPR didn't do any damage. What a horrible event you had to go through. I'm sending healing thoughts your way and wishing you a much brighter New Year with a new pacemaker clearing the way for NSR and getting on with your life!

Suesouth profile image
Suesouth in reply toSnowgirl65

thank you 🤞🤞

Hilianna profile image
Hilianna

It is good to hear you are having a pacemaker fitted today and an ablation in the New Year. Horrible experience re your heart stopping. You will not want to go thro' that again. Hope you have a reasonable Christmas. xx

Suesouth profile image
Suesouth in reply toHilianna

thank you, yes it is something I would not like to go through again, horrible experience!

Hylda2 profile image
Hylda2

welcome to the pacemaker club x

Suesouth profile image
Suesouth in reply toHylda2

thanks 🤪

MalJam profile image
MalJam

I have the same, no more meds, I wake up, sit cross legged on the bed lean forward as far as possible and shallow breath. Works in minutes to convert me.

Janith profile image
Janith

Merry Christmas! I wish you the best.

(I think that your story is a testament to why we immediately go to the hospital (l always do) when in afib … don’t wait around for your heart to stop … we also have a world class hospital five minutes away where my cardiologist is located.)

Jan Maree

Suesouth profile image
Suesouth in reply toJanith

definately, I am so glad I was there, or I wouldn’t be here today! Everyone at hospital said I did the right thing, you just never know!!!

DawnTX profile image
DawnTX

I’m sure you’re disappointed. I had one in October also it lasted 3 1/2 weeks of heaven and then atypical flutter arrived. Heart rate started at 1:05 I hit 199 yesterday when they were doing me in the hospital before the procedure. Something change the day before I hit 160 and stayed there all night.

yesterday I was having another cardioversion followed by a new med that would keep me in ICU for three days. I never got there because they tried three times but my heart would not cooperate and they could not shock me again. When my doctor told me when I woke up I cried. I had felt so good during those short weeks. I see him in two weeks I am on digoxin for the short term anyway which is some thing I never took but it’s not bothering me and HR was 99 when I woke up. He is still considering another ablation though I know he’s not sold about doing it I think he needs to talk to me because I’m not sold about a pacemaker and those pretty much are my choices now. There are other things but I have a feeling he has a reason not wanting to play with the others. He has already told me I have exhausted my heart by having 160 heart rate for over five months. First time to this particular hospital there was not a soul in there that had anything other than praise and rave reviews for my new doctor my EP. I had found that about my new cardiologist as well. My pre-admission cardio nurse replied when I mentioned the pacemaker that what he told me about anything I can take to the bank. She’s got almost 40 years of experience they do not throw compliments around lightly.

This time I’m a little bit sore especially around the ribs and I had a pain in the center of my chest inside and it feels like a sunburn on the outside though I am not red. I did not have this with the first one. I do not know how quickly the first one worked because it did. Innoway I’m glad it feels while I was there then to go home and have it sale within a couple of weeks again or maybe even less time. Just like everyone on here all I want is to feel normal again. I had all kinds of plans for when I got home what I was going to start to cook etc. right now I just feel like a lump of oatmeal.

Afib is the Devil I am convinced. I do know the doctors are working tirelessly to find ways to help us. One day at a time 1 foot in front of the other. Yes I had hoped I could be running but I will have to settle for the slow walk towards getting better

Elizka profile image
Elizka

Any updates?

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