Can't believe over 4 weeks this total nightmare is still going on. I've normally got paraxosismal af but picked up a bad sickness virus just before I was due to be going on holiday which lasted 5 days solid, 24hrs up and down being sick etc. Sent to A@E by gp after this with bad Afib and dizziness, BP 170/120, then Spent 4 days on a drip with dehydration , bad af and tachycardia 180-190 on admission, nobody seeming to bothered and saying I'm "worked up" and just dehydrated . My 200mg pip flecanide did nothing in the week following, tried a couple of times to convert with no effect. Seems to have been weeks of no sleep, lost 1.5 stone which while great isn't how I expected to lose it. My gp says I'm exhausted and likely just worrying too much,not interested it feels, smiles and dismissed, not his expertise seemingly . Gave me 2mg diazapam which seems to work for the anxiety but don't want to be on this long term. Been to A and E again last week now they say don't take flecanide as its not working any longer, but put me on 5mg bisoprolol which I have mixed feelings about. Felt better yesterday for first time in weeks and tried to "Potter" about, feeling old at 52, then last night again those awful feelings and tachycardia wondering if I did too much to soon . Today is another day I suppose, waiting for an urgent appt for freeman's to see an ep for ablation but finding it hard not to feel down and wonder if I'm just being stupid and making myself worse, feels like I'm trapped and nobody understands . Seems the hospitial aren't concerned at these attacks, just me, I feel such an idiot yet it feels like I'm unravelling just waiting for the next bout, last night again it starts fast and missing beats, seems when I relax late it hits me most, can't even get proper rest, sorry about the long whinge, just feel isolated and a bit like I'm on my own today, seems no end to this nightmare this time. Hoping for ablation as this isn't living its existing, never felt so low or embarrassed to say so.
Very down : Can't believe over 4 weeks... - Atrial Fibrillati...
Very down
Hello there. Worked up? Your heart is not behaving! What do they expect?
We all understand where you are right now.
Thanks Rellim, got an appt with EP soon hopefully, just feel a bit down I think, just seen to get a different answer each consultant at the moment, hate going to a@e but when its at 180+ I don't know what else to do
Sometimes these apparently bothersome spells can be a blessing in disguise and will enable you to be make progress instead of being on a plateau. It's an EP's advice (and directions to less informed doctors) that will see you move forwards.
I’m so sorry you feel so rotten and sympathise with your misery.
The virus you had sounds bad and will have knocked your whole system out of kilter but especially will have affected your heart. I had a long-lasting mild virus infection which gave me similar symptoms to yours, but not as severe.
I would suspect your exhaustion is from the viral infection which takes time to clear the system - I was so tired and breathless, I couldn’t do much and couldn’t be bothered doing much else, couldn’t get peace to sleep for my heart’s gymnastics and was so miserable.
Cardiologist was helpful but more or less said ‘nature of the beast’ and advised me to drink 2 litres of water daily in addition to tea etc, make sure I took enough exercise such as walking and approved my useof magnesium which I had just started to take (in desperation to deal with ectopics and tachycardia). At night when my heart wakened me, I propped up on pillows to minimise the effect of the arrhythmias and found I could doze off again - especially if I did calming breathing exercises.
I hope some of this will help you to cope until your body gets over the viral infection - it felt to me like a downward spiral and I found that even a slight improvement was a victory. And - it did go away and I got my own type of normality back again.
Best wishes - I hope you feel less alone and recover quickly.
Just sums up how am Feeling totally your words. I can't get an answer off my doctor should I walk gently shouldn't I, just, take it easy you've had a very bad virus and time of it, maybe I should try short walks see if it helps, I suppose then il know, thanks so much for the reply, don't feel so stupid or isolated now thank you
Yes, we do need to fill in the gaps ourselves as far as the detail of care is concerned. I started off with short walks, no lifting or bending and kept walking a bit further each day. Overdid it a couple of times and paid the price.
Never feel stupid with this horrible condition - so few people, including medics, really know how we feel at times. My lovely cardiologist asked me with some degree of wonder in his voice, if I could feel the arrhythmias which were on the ECG traces!! I was speechless for a few moments.
ASK your EP about Tikosyn (dofetilide). I converted with this med and have been afib free we for 7mos.
I am in the UK and have not heard of this drug. It sounds very good so why are we not taking it or at least being offered it as an alternative to the drugs most of take ?
Tikosyn doesn't have approval in Europe because of side effects.
Hi there , I was recently hospitalized and was given anti spasmodic, known AFib initiators, That I was in high rate af didn’t phase or interest anyone, so I know how you feel to some smaller degree. I’m so sorry that you have had to go through such a harrowing experience, just dreadful. When we get fast rate I’d af all we fibbers get caught up in our own heads as to the worst scenarios, but we are all fearful at times, I’ve found that Diazipam 5mg calms me enough for me to take back control. Relaxation techniques can help a little I find, as just communicating with the good folk on here cuts the isolation for me, I hope you get the help you need and soon. Kindest regards Dee
Great to hear I'm not the only one feels like its a runaway truck, thank you taking time to post, this all makes me feel not so much like its in my head
So sorry you feel dreadful. Good luck. we are all here for you.
You're having a really bad time at the moment, never feel stupid and alone, you're neither! Things will improve, take it easy and don't be too harsh on yourself.
See an EP privately as then you'll get more time to discuss your situation and get on his NHS ablation list sooner if needed, which I suspect is the case.
I found sharing my issues and worries, the advice and shared experiences on this site invaluable as relying on doctors etc who have never experienced the road we are traveling just makes the uncertainty and frustrations worse. My wife nagged me to do some proper breathing, 6 in and outs in a minute and for me that does help to some degree. Good luck and hope you feel better soon.
I don't know why we beat ourselves up for having this disorder, but we all do. It's its' own beast, and until you get an ablation and corrected on your meds it will rear it's ugly head at will. It's taken me many episodes, sleepless nights and anxiety ridden days to accept this. I don't think there is a single person who suffers from this horrendous condition that doesn't feel this way. How could you not? This is your heart we are talking about.
You didn't do anything wrong. It truly is the nature of the beast and it needs to be treated like the beast that it is. My advise to you is to schedule an ablation ASAP. Flecainide probably does still work for you, but it needs to be taken on a twice daily schedule in order to be effective.You can also take it with Bisoprolol, just check you BP and pulse three times daily.
This is your wake up call to tackle this thing head on. I promise, things will get better. A few months ago I was bedridden with anxiety, completely convinced that my life was over, all of it. in 2 months I have gotten an ablation and on meds and am doing great. Am I scared everyday that it will come back? Hell yes! But I will deal with it when and if that happens. I'm back to work full time and planning my next dive vacation.
And a piece of advice: Take the anxiety meds. You won't become addicted unless you are abusing them. Start with 1/2 of the dose you are prescribed and see how you do. You really need them at this point. It's not forever.
I suppose that I too never seem very concerned when my patients come in with Rapid A.Fib, as long as their vitals are stable (otherwise) and they are anti coagulated. The reason being that I know that If I have to, I can shock them back into NSR. Most of the time, with meds and supportive care, they convert. in 21 years of Emergency Medicine practice, I have never had a patient die because of AF.
Now, if I could only apply that logic to myself when it's me whose on the table....
Make an appointment with your EP. Go get em tiger!
Hi please can you tell me why you need to che k your b/p and pulse x 3 daily im worried because i dont do tbat as it makes me more anxious xx
Only if you are taking both meds together (Flecainide and bisoprolol) as they can lower your pulse and BP.
Thankyou x
Listening to all the help and advice has made me much more relaxed and the diazapam has definitely helped, they gave me 2mg which is low I've been told anyway for a 6ft 3 big guy, but it worked for me. Last night I woke felt sick and then I'm sure I'm back in sinus of some sorts, not as breathless, and I've cut the bisoprolol in half they upped it to 5mg on hospital when I was dehydrated, from 2. 5, and so far been OK and don't feel as breathless, the bisoprolol made me feel tired and very very out of breath even walking or standing. I'm sure they way I've been ill has stopped me going back into sinus Rythm. Pushing this week for an ablation as quick as possible, before this turns into permanent af now I'm back in Rythm, thanks for all help and it really has lifted my spirits, so many people taking time to try and give me comfort, glad I found the group, best thing I've done to get info about this frustrating condition.
Hi! Unfortunately we just have to live with this nuisance. I think the doctors only can do so much. Which is giving us all these different drugs in their many different doses. I feel there is no cure for afib, not yet anyway. We will find the best method that works with you. Ablations and pacemakers help, but they are not a cure. Since I have been a sufferer for a couple of decades, I try to find positives to think about this. At least I’m still living! And when not in afib, don’t feel so bad. Always could be worse! I think I’d rather take atrial fibrillation than a terminal cancer with 3 months left to live, for instance. So all of us fibbers, let’s try not to get too frustrated of this ailment of ours. Could be worse, is my motto! Take care everyone!
I greatly sympathise with you and just want to say that you are not stupid or alone. All of us on here are fighting the beast that comes in many different forms, so that not everything works for all of us as we all have different metabolisms. I know how awful I felt when I had my 5th ablation and came out of surgery with AF, I didn't have it when I went in!! Try Magnesium if you haven't already, Citrate or Taurate, and do listen to Dr Sanjay Gupta's videos on his YorkCardiology site. There is so much reassuring information on there and he is such a caring doctor.
On the magnesium day and night again, had to stop it with the stomach virus, hoping it's settling and get some rest and back to normal, or as normal as I can
Hi, I do sympathise, that sounds horrid and so stressful
sorry for the length of this, just ignore it all if boring but if you find anything useful I d be glad , we all are very different but your story rings a bell!!
I had my 3d ablation early March , had a very nasty mishap at the end of the procedure so was moved into the main hospital because they had better facilities to deal with it was pretty weak , and felt dreadful, plus it was freeezing!!
they let me go home after a few days as the complications had -resolved very dehydrated, had hardly eaten since cardio version ( two and a half yoghurts)
2 days later developped ghastly virus stomach bug suddenly got roaring heartbeats again( 150 ) also dreadfully weak and ill
had an emergency cardioversion, allowed home again , but after 2 days got another much worse stomach bug ( i ve travelled extensively, had many of these but this was way off the scale, sounds like yours)
Saw my ep he could not do anything as my inr was too high he doubled dose of beta blockers
I felt a bit better a couple of days later, seemed to have shaken the bug off , still going at 150 +AF - i have a Kardia machine!
had been drinking a lot of liquids to hopefully flush bugs out and rehydrate, fancied a cup of coffee out, went to local cafe chickened out of coffee ( yes i ve read pros and cons! ) had hot chocolate and a modest cake ( possibly rebellion)
When I woke up the next morning I was running at 57 in NSR
Coincidence? Electrolytes imbalance and reaction to bug? Well I have read the various comments about cutting out sugar and I think there is definitely something there
Anyway , fairly modest plus in sugar worked for me but I was probably rock bottom On blood sugar that is
I asked my doctor wheher there was a health drink which might stabilise electrolytes. She says best not interfere when i m ok - I agreed
180 bpm is horrid do try and relax, ( easy to say, I feel for you!)
lots of cool drinks, try sitting up in. Bed, on the sofa or whatever
And whatever allows you to chill out a bit,
Music, book, closed eyes, meditation, possibly yoga?
whatever, mine is looking at car engines, or cuddling labradors, but never mind! sleep is very important
I chuck a couple of handfuls of epsom salts in my bath supposed to gently supply magnesium,have four squares of very dark chocolate a-day for potassium, and a vitaminD tablet don t know if any of these work , but my levels are fine, the doctor had them all tested for me -she s very good! But everyone seems to look dubious about electrlytes, although I am becoming very interested, they just want to increase dosages of pills which simply don t work on me
I do wish you all the best and hope the accelerated ep appointment helps quickly
I'm sure your right and it's electrolytes, I'm Feeling better today after eating for part few Days and drinking as much as possible, and taking my magnesium supplements again now I can tolerate it
So sorry to hear what you are going through. in the short time i have been on here pretty much everyone has the same problems. Good quiet patches then it rears it's ugly head and gives you both barrels then we naturally panic, as you quite rightly said it's our hearts after all. We all can truly relate to the being brushed off feeling at one point or another i often wonder how they would react if it was them walking in our shoes. hmmm maybe a topic for another discussion some day.
I have had responses such as well you look fine to me... your'e far too young (49) to be going through all that so it can't be real....not a scrap of fat on you u look perfectly healthy ( i exercise to keep my weight down) It can feel very hurtful to be politely called a lier and a dizzy hypochondriac when your in that whole spiral of a bad patch and freaking out over it and not receiving any help. I do respect from the doctors point of view it can be hard to catch and they need proof or that its generally not fatal but boy it doesn't feel like that when it kicks in so it does feel like a total lack of empathy from non sufferers.
Many of us beat our selfs up over this and i think a lot of that stems from being made to feel your not worth fixing because we are not taken seriously for long periods of time.
Five years on and still no formal diagnosis for me as mine are short lived and aggressive so very hard to catch even with my kardia mobile. I have a few good readings and finally have an appointment to see a cardiologist in 2 months. keep your chin up we are all in this together you are not suffering in silence. take care.
I can sure relate to your experience. It is a terrible feeling when your heart starts doing crazy things and I don't think anyone passes it off as "oh this is fun". I also sympathize with your experience with doctors. Don't feel too bad about the tranquilizer; I don't have an addictive personality and was on ativan 8 months, 1mg daily, for the post mastectomy pain and it actually helped. My doctor's hair stood on end when I told him; he said that's a very addictive drug. Went off the next day, nothing happened except three secomds of a bit of anxiety. As soon as you say you don't want to be on that drug, you probably are afraid of all the things they say about them. It helped me BIG time. I eventually went on a low dosage of citalopram which doesn't interfere with my tamoxifen and apparently not too much with the blood thinners....but one has to stay watchful. That said.....it is not our faults that this happens. I now take magnesium (600 mg), my blood pressure med is candesarten and if you look this up on PubMed, it has a tendency to stop your heart from re-modeling electrically afibs. Losing weight makes a HUGE difference, if that is a concern. Sleep apnea as well. Whenever you can. exercise and that just means a half an hour of walking a day....your heart always needs that no matter what....plus it helps your mind. I have had two cancer diagnosis and I still feel the heart thing is worse.
I had something similar happen to me after a viral illness a couple of years ago. I have paroxysmal Afib and would have occasional episodes. After that illness all of a sudden anything that would raise my heart rate, like walking any slight uphill, would send me into Afib. Anything the least bit stressful would do it. I saw an EP about having a ablation. While I was in the process of setting it up I very gradually started having fewer episodes so I put off the ablation. After a few months I was back to "normal". I didn't have the ablation. I think viruses can play havoc with your system. I wish you well. Hopefully it will subside in time like mine did. I recently had an ablation and had a lot of arrhythmia afterwards. They took me off Propafenone and put me on Multaq which has helped a lot. Afib is really a challenge!
a virus can definitely cause a disruption to your system and consquentally, your heart rhythm. I believe it has something to do with electrolytes and your bodies reaction to fever and such.
I hear you loud and clear. I caught a virus a few weeks ago and it put me into a bad af attack. I was out of wack al day and all night. I kept thinking it would possibly clear up. Then I was so tired I just wanted to stay in bed. Finally got up and told my husband he would have to take me to the emergency room. I was a bit scared my heart wouldn’t go back in rhythm. Hooked me to IV and it took 24 hours to get me back in sync. It is scary and depressing. I just wanted to rip all the cords off and get out of the hospital. But all worked out and I realize I'm not as bad as some. My heart goes out to you and I certainly hope you are better!
Thanks so much everyone for lifting me,and helping me through this, yesterday it seems to settling and I'm Sure the diazapam has more than helped, today I'm just taking it easy and eating what I can and drinking plenty of fluids. And on advice above taking my magnesium I usually do, hoping the storm is over, just can't believe a stomach virus can cause the worst case of afib I've ever experienced. Pushing hard this week to speed up the ablation, as it's worth a chance to stop. Such attacks or even lessen the effects, but so grateful for this site and the kind people on here, unbelievable kindness.
One way to go is to research the best EP/cardio in your area and get a private appointment with him/her. You'll get seen fast and hopefully get very good service. I did this and found it enormously helpful. The cardio ordered various tests which I was able to have quickly on the NHS by calling up and asking for cancellations. I saw the cardio just twice privately and that was all that was needed - well worth the £350 it cost.
We all understand. Hang in there. 🌸
I live in the US and wonder what bisotoporol drug is. After my second ablation I am back on metoprolol and started amiodrone (800mg- so fearful of the silent side effects). My AFIB seems to have stopped but heart rate remains high. Also get winded going up steps. Despite that I am teaching Pilates/Yoga and senior cardio and strength class twice a week. I sympathize with all the remarks of the anxiety, lack of concern by Emergency room staff. My EP has had me talk to nurse and she said please be patient you are very early in post ablation. My first ablation was much different.
Greetings from sunny Southern Calif.
Lol it's a crazy circle. Stress begets AF and AF begets stress.
One just cannot win.
Have you tried Xanax as needed? Does wonders for me in times of "the skips."
You can also try another half of the Bisoporol. 5mg is a rather small dose.
Do you have Sotolol over there? Was on that for 2 years and though I still had skips, the rate was very much under control for those 2 years. Kept the rate at a steady 64 ish as a resting rate.
Check with your doc first, of course on any of the pill ideas I have given. Good luck.
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