Somewhat Fed Up at 4:45am: Still... - Atrial Fibrillati...

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Somewhat Fed Up at 4:45am

Afibflipper profile image
56 Replies

Still plagued by illness 7 weeks post ablation - the heart is holding NSR (few niggles due to current state I’m in) so still not been able to enjoy the new normal heart rate. Since the GA for the ablation I had issues of food and meds not able to swallow but fluids going into lungs! I have had awful asthma, chest & sinus infection still going on after 4 antibiotics & steroid courses. It’s now about 4:45am and I’ve not been to sleep yet, been in a chair all week as can’t lie down or get an attack, which I’m also getting anyways every couple of hours or so. Not had more than 1-2 hours sleep a night for well over a week- think the steroids have kept me going. Going to respiratory consultant later today - 10 months I’ve been ill and off sick - maybe I’ll be better by next Christmas! I can’t believe I am still fairly upbeat and not sunk into a depression which is amazing really as earlier in the year I did feel pretty sorry for myself (even though I know many have it worse than I but think we all hit a brick wall at some point don’t we!

I hope everyone else is feeling pretty good this week, and got over any hurdles you’ve been crossing recently. Take care all x

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Afibflipper
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56 Replies
Gumbie_Cat profile image
Gumbie_Cat

Sending a big virtual hug. It sounds really rotten, and not being able to enjoy that NSR makes it worse somehow. I really hope that this can be sorted for you.

I have been feeling far too sorry for myself, with much less reason. Went back into persistent AFib just two days after my ablation. Though I’m otherwise recovered, I get annoyed that I didn’t even appreciate the NSR as I was so queasy from the sedation. Also, I’ve convinced myself that nothing is going to work for me. Which is really silly just four weeks after the first ablation. Just the way it turned persistent just 8 weeks before, it seems so tenacious.

So if you can keep upbeat with all of this, I need to give myself a good talking to.

Afibflipper profile image
Afibflipper in reply to Gumbie_Cat

That virtual hug greatly received but so sorry Gumbie_Cat things not going well for you - do try to keep your positive head. As I say we all hit a brick wall at some point and think that’s it game over, I had 2 ablations and 2 CVs before this 3rd one and still keep feeling shocked when it’s not acting out with what I have now - there is hope for you, hear a 🎁 box of positive vibes for you from me and a hug 🤗 stay strong 💪 x

Gumbie_Cat profile image
Gumbie_Cat in reply to Afibflipper

Sending positive vibes right back! Good luck with consultant today.

DawnTX profile image
DawnTX in reply to Gumbie_Cat

Thinking of you. of you It is miserable when things fail. I didn’t realize how lucky I was with my first two ablations. I guess I took it for granted when I felt better but that is what happens. Then the third procedure VOM plus more that time and downhill since. I got a 3 1/2 week break with a CV in October that was it. Don’t forget though you do get the blanking period. I pray that that is what is going on with you and you’ll soon feel better. I will find out on 1 February what is next for me. Fingers crossed we all find a break in a fib this year.

Gumbie_Cat profile image
Gumbie_Cat in reply to DawnTX

Thanks Dawn, good luck!

Afibflipper profile image
Afibflipper in reply to DawnTX

Good luck with the 1st February - this hopefully will be the one that sorts it - I’m still in disbelief that it really is ok right now but it is a great feeling when I think “yep it’s ok today too” - I just can’t wait till I can just get up in a morning and have a fabulous day, a walk, sit in the sun 🌞 (not too hot) and I can be ‘normal’ - wish I could wave a magic wand for everyone on here too 🪄 (there you go) 😊

DawnTX profile image
DawnTX in reply to Afibflipper

I wish I had one as well. The 3 1/2 weeks after my cardio version were just amazing how I want to feel that way again

Afibflipper profile image
Afibflipper in reply to DawnTX

That’s how I was after second one in June - had forgotten what it was like to feel so good, so much energy etc - we will get there be 💪 punch 🥊 it’s lights out x

DawnTX profile image
DawnTX in reply to Afibflipper

I like your style L O L

meadfoot profile image
meadfoot

So sorry to hear this. I hope you get some help at your appointment later. Nothing goes on forever so heres to some ease in the situation for you before too long. Best wishes.

Afibflipper profile image
Afibflipper in reply to meadfoot

Thank you so much you take care stay well too x

jeanjeannie50 profile image
jeanjeannie50

I wonder if your GP would prescribe a sleeping pill just to get you through this rough time. Lack of sleep can make you feel really poorly.

Afibflipper profile image
Afibflipper in reply to jeanjeannie50

I already do have them usually for insomnia but as respiratory is issue in may stop breathing I’m not taking them - plus the steroids & salbutamol wake you up - no winning right now x

jeanjeannie50 profile image
jeanjeannie50 in reply to Afibflipper

Bless you, what a nightmare it all must be. Lets hope your respiratory consultant has some answers today. Let us know how you get on please. x

Afibflipper profile image
Afibflipper in reply to jeanjeannie50

Will do, just on way to hospital now x

Afibflipper profile image
Afibflipper in reply to jeanjeannie50

We’ll jeanjeannie50, this doesn’t appear to be asthma apparently- consultant thinks it is the nerves in my throat & brain that are completely hypersensitive and a condition known as Hypersensitive Cough Syndrome may be responsible and not my asthma. The tickle throat and then the violent coughing spasms are when the nerves and brain feel there is a need to cough but basically go crazy. Need a CT scan to rule out foreign bodies in lungs from after the GA in November for the ablation when I ended up inhaling fluids but food &meds wouldn’t go down. The gunky chest may be from the inflammation of last 7 weeks. Being put on new inhalers and a very low dose of morphine slow release that won’t be addictive but will calm down the nerves excitability (fingers crossed). The consultant seems excellent and got the possible diagnosis from my history (it made a pleasant change to have a consultant say he understands my symptoms and not be like many who when I never follow text book symptoms they usually misdiagnose me or don’t diagnose at all as tho it’s in my head. ) I had to request this referral to consultant as no one looked further than asthma even when meds weren’t helping! Maybe I’ll breathe a little easier tonight (pardon the pun)

Thank you everyone for lifting my spirits again with your good wishes - wonder if I’ll get to sleep before 6am and get more than 1.5hours tho 🤷‍♀️ but few bit calmer in all but cough that there may be an end in sight and I’ll get my life back soon - phew

Sleep well everyone and tomorrow is another day - keep calm, carry on & be positive xx 🤗

tomtom222 profile image
tomtom222 in reply to Afibflipper

The small dose of morphine could, should and I hope will end this vicious cycle of coughing irritation. I'll definitely send you. The very best wishes and prayers!

Singwell profile image
Singwell in reply to Afibflipper

Kind of good news. Persistent Cough Syndrome is a thing. Speech Therapists are good at dealing with this so ask for a referral ASAP. I can give you a contact for someone who specialises in helping with cough syndromes if you DM me. She'd see you privately of course. We did a podcast last year with her called 'Why I love coughing' where she talked about self help techniques for getting your system out of the coughing habit. I won't post the link here as its advertising buy happy to send if you wish. Teeny bit of light at the end of that tunnel maybe?

Afibflipper profile image
Afibflipper in reply to Singwell

Thank you - have DM you xx

jeanjeannie50 profile image
jeanjeannie50 in reply to Afibflipper

That's good news that your new consultant has really listened to what you've said and given you hope of being cured. Did you sleep better last night?

Good luck.

Jean

Afibflipper profile image
Afibflipper in reply to jeanjeannie50

Think body shut down fell asleep at computer desk

Breathing not good this morning tho

I’ll bounce back tho always do x

jeanjeannie50 profile image
jeanjeannie50 in reply to Afibflipper

Goodness, I can honestly say that I've never fallen asleep accidentally. Hope your breathing improves.

Afibflipper profile image
Afibflipper in reply to jeanjeannie50

Hi Jean - I have managed to nod in the chair this afternoon - peak flows dropped right down this morning so back on steroids and inhaler actually worked with 2 shots and not the 4-6 - but having same issue as after the GA for the ablation - food sticking in throat or going up back if nose (not inhaled any more which is what I was convinced started all this 2 days post op )

It is quite scary with no voice tho (I did feel so bad this morning I cried - all that came out was squeaks) anyway no tears since feel ok head wise right now 😊)

Thank you so much to you and everyone for checking in xx

Gumbie_Cat profile image
Gumbie_Cat in reply to Afibflipper

Crossing fingers that things improve now.

jeanjeannie50 profile image
jeanjeannie50 in reply to Afibflipper

I don't want to frighten you but having worked in a nursing home, the only time I've been aware of swallowing and food not going to the stomach was after patients had a stroke. I'm not medically trained, worked in admin, but a nurse once told me how visitors would feed patients, who were nil by mouth after a stroke and then excitedly report to the nurses that their relative could eat. Unfortunately, it went mostly into their lungs. Have you told anyone medical that your food isn't going down properly?

Could you puree your food for a while?

Jean

Afibflipper profile image
Afibflipper in reply to jeanjeannie50

I have mentioned it and I did think of it earlier in this process - I do think it’s more to do with first when they gave me a tube under GA that I then got the sore throat and swallowing/inhalations - that did get better but as the chest got worse and the coughing more violent & prolonged the throat is again extremely sore and I think a bit swollen again bt thank you I’ll keep an eye on it x

DawnTX profile image
DawnTX in reply to Afibflipper

The problem with steroids also is what they do to our immune system sometimes you feel like you can’t win. When I am on steroids for respiratory my sugar goes up and the odds are pretty good I’m going to get some thing else. Fingers crossed for you to improve soon.

Ppiman profile image
Ppiman in reply to jeanjeannie50

Well said, Jean. Poor sleep is a devil and contributes to a good many other issues.

Steve

Cha275rL profile image
Cha275rL

Aw I really hoped you’d b better by now flipper. Good for you keeping upbeat through all this, must be really difficult!!! Hope the consultant can help you to get better, and sending you another virtual hug 🤗 xx

Afibflipper profile image
Afibflipper in reply to Cha275rL

thank you - I have virtually lost my voice now and throat is so so painful - not a happy bunny right now xx

Cha275rL profile image
Cha275rL in reply to Afibflipper

No I bet you’re not. That’s been going on far too long. 🤞🤞

Afibflipper profile image
Afibflipper in reply to Cha275rL

see my reply update to Jeanjeannie50 & thank you for your good wishes again - everyone lifted my spirits today xx

DawnTX profile image
DawnTX in reply to Afibflipper

I have had an awful time with my throat since my last CV that failed. I had a TEE with it and I know somehow hurt my throat. It is like a blood draw do you have people that are great at it and people not so much and maybe shouldn’t do it. I was having trouble even swallowing water it felt like it stuck and food felt stuck in my chest. The past few days I’m finally feeling better there.

Afibflipper profile image
Afibflipper in reply to DawnTX

I’ve had GA before and never been like this though and it started 2 days after (had the sore throat after op but then things got stuck then I inhaled without even trying to swallow - glad you are settling now and that you get sorted (my heart is still doing absolutely great thank goodness & never has before when I’ve been unwell. Keeping looking on the bright side - someone put a picture post on Facebook of Snoopy and it was brightly lit in yellow and said something like,

“If you can’t find the sunshine, be the sunshine” - I know it sounds twee maybe but I guess it’s true. 😊

Rainfern profile image
Rainfern

What a wonderful spirit you have flipper - and to me that means something is working (even if it don't feel that way) despite temporary complications. It's so good that NSR is holding and surely your body will get an extra healing boost from this - even if not at quite the speed anyone would wish for you!! So sending you hugs wishes for health and wellness xx

Afibflipper profile image
Afibflipper in reply to Rainfern

thank you Rainfern, not too happy this afternoon as throat so very painful and have virtually lost my voice now - I keep saying I must have been evil in a past life & yes the NSR after all this should give others hope that that ablation can work xx

Buffafly profile image
Buffafly

That’s horrible, so sorry you are going through this 💞

Afibflipper profile image
Afibflipper in reply to Buffafly

Thank you Buffafly - it’ll all come out in the wash as they say - just need to hold my nerve I guess - enjoy your day xx

Ludham profile image
Ludham

so sorry to hear about your condition was waiting to hear how well you were progressing. I know how w feel with lack o sleep I usually have three hours a night as part of my long Covid symptoms. Let us know how you got on today with the cardiologist thinking of you take care x

Afibflipper profile image
Afibflipper in reply to Ludham

Hi Ludham, it was a respiratory consultant I went to today - change of scenery from cardiology 😆

Please see my update on jeanjeannie50 as to what the possible problem is - it is by the sound of it not my asthma (my genetic gene pool sucks but at least for now both my cardiologist and now the respiratory consultant seem to know what they’re doing and talking about which takes a lot of the fear of constantly being misdiagnosed or not not diagnosed as nothing with me is ever text book! Going to get new meds so hope I can get my life back sooner now

Thanks for checking in - maybe we can actually get some sleep tonight - even if from sheer exhaustion. Best wishes to you and hope Mrs Ludham is well at the moment too x

Astridnova profile image
Astridnova

I have been having some similar issues, with incredible pain along shoulder and throat muscles, down the arms and on the chest if Ileaned foreward, and like a hot wire through backof neck, starting 2 days after ablation. Last 2 days it made lying down impossible, the pain extended behind my ears every time I tried. Not asthma, which is what I thought I had, and ventolin actually caused huge difficulty breathing and jet-propelled my thyroid. I learned that Salbutamol depletes potassium - and so do most of the cardiac meds. So I started taking Magnesium 500mg tabs. I okayed this with my cardiac doc, but actually, I had to take 1500mg in the end. That really helped. I did some research and think my AF may actually have been contributed to by taking Loratadine daily whilst traveling through high pollen storms in Australia. There were several research articles in the late 1990s about loratadine and other second generation antihistamines blocking calcium channels and causing hypokalemia with women over 60 particularly vulnerable. The info has been vaguely integrated into side effect literature, but very little new research gets publicity - seems basically to have been buried. These drugs are now a license to make money and mo ey can starve relevant research of publicity and funding. My cardiac people focused on the thyroid (which settled within days) and knew nothing about the ventolin risks, let alone the loratadine ones. But I reckon that is what I experienced. Am awaiting the results if multiple blood tests in 2 days, notably electrolytes. I know what you mean about the stress and pain driving up your pulse and you have my heartfelt best wishes.

saulger profile image
saulger

Thank you for asking !

I had a surgical mini-maze for AFib exactly seven weeks ago and I am also in NSR and feeling great.

76 years young and back on my rowing machine, albeit low intensity.

Wishing you a speedy recovery from the current hurdle and continued NSR. Saul

nakuru8 profile image
nakuru8

It sounds difficult for you.Thoughts are with you. I hope your consultant can create some positivity for you.

Hilianna profile image
Hilianna

Hope you are feeling a bit better soon. It is so hard to keep your spirits up when so many things go wrong. I admire your resolve and trust your sleeping pattern improves. I have been 5 weeks recovering from a failed arthroscopy (new knee needed) and unable to sleep because of nerve related pain in my leg all the time. Codeine, tramadol and parecetamol etc don't work. Wonder if Jean's advice re a sleeping pill might help you... and me. I am on the list for an ablation and hope all this does not affect it.

Afibflipper profile image
Afibflipper in reply to Hilianna

I usually have insomnia and do have sleeping tablets when it’s really bad - dare not take right now as breathing so unpredicatable it might knock it right off my sleep last night night and also they’re giving me low dose morphine from tonight which is a risk of the same (breathing issues)

I really hope you improve soon! Tramadol is not totally effective for me until I took it more regularly (didn’t want to do that but need must) I thought it was a there & then pain relief (some hope for you though I think you hopefully will surprised when this initial post op period is out of the way a friend of mine has 2 new knees and is bad swimming, walking etc so here is a positivity box 📦 for you from me 😊 x

Hilianna profile image
Hilianna

Hi flipper

The GP has given me morphine to deaden the pain so am hoping for some sleep tonight. Also, being able to sit and relax without that grinding pain. I can cope with the nausea but dare not try driving feeling like this - a bit high!! Hope you manage some sleep tonight too. Take care everyone. x

Afibflipper profile image
Afibflipper in reply to Hilianna

Glad you warned me re what to expect - enjoy your high trip and hope you get a good sleep too and less pain in the coming days x

Afibflipper profile image
Afibflipper in reply to Hilianna

Hi Hilianna, it’s 3:20am and I’m still up - hope you’re getting on better with the morphine tonight and get a long Sunday lie in too 😊

MummyLuv profile image
MummyLuv

get well soon my love

Afibflipper profile image
Afibflipper in reply to MummyLuv

Thank you very much, hope you are still doing well x

Hilianna profile image
Hilianna

Hope you had a good night. Mine was poor - nausea caused by the morphine!! Still suffering. Impossible to win..... x

Afibflipper profile image
Afibflipper in reply to Hilianna

Things any better today with the sleep/morphine symptoms - hope you’ll be up and about in no time

Afibflipper profile image
Afibflipper

Hi Hilianna, I’m so sorry you’ve had another bad night - what dose did they put you on? (Mine is only 5mg at the moment but can go to 10) This was my first dose and I’d had another attack around 10pm, took dose at midnight and then started to feel bit sleepy (actually wondered about how you were doing then) - I had great night sleep till 7am but had another attack about 7:30am. Took new inhalers and next dose of morphine - almost midday with little niggles and but sleepy. They can give you medications to counteract nausea/vomitting - if it’s really bad try calling 111 you may be able to see someone today 💐🌺🌸🌷🌻🌼sending lots of non allergic flowers for you Hope you feel better soon

They say ginger is good for nausea (not sure if it works on med induced but maybe try some ginger biscuits 🍪 or ginger infused tea

Did it get rid of the pain at all though?

Hilianna profile image
Hilianna in reply to Afibflipper

Thanks for the lovely flowers! I feel pretty grim at the mo. I took morphine on Fri teatime (1.5mls), the nerve pain in my leg disappeared, but I developed bad nausea. I took no more and the nausea went away Sat evening. Anti sickness medication, which I took when the nausea developed, did nothing. Pharmacist has since advised I should have taken it before!! Slept well on Sat night but the pain came back yesterday and last night was a write off. I will ring the medics asap, when their offices open, for more help with pain management. This nagging pain all the time makes it impossible to concentrate on anything. Hope your new inhaler is working. Here's to another fun-filled 24 hours....... x

Afibflipper profile image
Afibflipper in reply to Hilianna

Sorry you’re not making headway yet - I hope they can change you to something else. I am beginning to make a little progress I think as not as many episodes/not lasting as long - heart doing cartwheels again this morning but I hadn’t had any food or drink to set it off that I know of so just hoping it’s my current condition! Keep your chin up, do some marks on paper then turn it into some artistic doodle 🤷‍♀️ you might be the next Banksy x

Auntwhateverat profile image
Auntwhateverat

Sending you good thought! Hope you are feeling better every day.

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