AF Association

Newly Diagnosed and Terrified!!

Had my first noticable Afib spell a couple months ago. Was woken out of a sleep with it and called 911, pulse was around 270. Was not aware of what it was so I believed I was dying. I was hospitalized for 3 days. Blood work, continuous heart monitoring, Nuclear Stress test, calcium scan (result 0) and Echocardiogram was performed. All came back fine. No signs of heart disease or structural abnormalities. I was converted back by IV medication within about 6 hours and have since seen the cardiologist twice and started on Warfarin, intially Sotololol 80mg twice a day but could not tolerate it and was put back in the hospital and taken off. Sotolol was replaced with Metoprolol 12.5 mg twice a day. Heart disease runs heavily in my family and although these test have all came back normal, I'm terrified they have missed something. My life has literally came to a halt, I am terrified to be alone, have slept setting up in a chair since it happened, do not want to get far from the hospital so traveling, or going places without quick ambulance access is out. I'm paralyzed with fear, day in and day out. I've been in the ER 4 times in the last 3 months thinking it was out of ryhthm although it was not. Prior to the Afib I had experienced PVC's for many years so now anytime I feel a skipped beat I call an ambulance thinking it's going to happen again, sometimes the HR is higher but heart is in NSR. I was put on .25 mg of Xanax twice a day and finds it helps for a few hours but the remaining day is filled with anxiety and avoidance of what I've read might trigger it. My life feels horrible at the moment as all I do is set around and fear the next Afib spell. Am I alone in this as far as the fear?

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Sadly AF and anxiety are common bedfellows. Here in UK finding support is probably as bad as in USA so it becomes important to take control of you own health.

AF won't kill you . Fact!

It may change your life but by taking control. improving diet and cutting out likely triggers such as being over weight , stress or alcohol you can like most of us continue a happy and productive life.

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I've cut out all caffeine, including chocolate, don't drink or using anything OTC.... Also not overeating any longer as I believe q that the morning I went into Afib it was somehow esophageal and bloated stomach related, however my Cardiologist doesn't recognize a connection between the stomach and heart... Thank you for the reply.

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Your cardiologist is really out of date then. This is a common problem. Vagal AF (search top right) is still denied by some old school cardios but does need slightly different treatment..

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I'm seeing an EP in January. Can you please tell me what the difference is in treatment? I've been diagnosed with Paroxysmal Afib.

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Generally speaking if your AF is vagally medicated slowing the heart with beta blockers will make it worse.

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Paroxysmal Afib is the best one to get rid of by ablation insist on getting one

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Hi! I have paroxsmal AFib and had an ablation in July and this week had the worst AFib episode in a long time: heart racing at 180 beats per minute, back via ambulance to A&E - everything fine apart from my electrical activity!!! I am FED UP as I don't overeat, am slim, but am finding the cold weather affects me and climbing up stairs - I got so out of breath and dizzy and could not continue with my plans for the day (letting a few people down!). This is SO frustrating and have asked my GP to refer me to my Cardiologist, who I have not seen since way before the ablation (a year at least!). There seems to be no after care!!! It is scary and I feel my 'quality of life' that was supposed to improve, has not!!

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You must be patient an ablation isn't an instant fix your heart has been through trauma and needs time to heal it takes up to a year meanwhile see your cardiologist

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I disagree with your cardiologist. I truly believe with all my heart that overeating can certainly trigger AFib. It did me every single time. I am not a doctor or anything like that but just speaking from experience my own personal experience

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I agree about the overeating being a trigger.

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I totally have more skipped beats wgen I eat to much, Dr. Sanjay Gupta, im sure i spelled tha wrong, he says the stomach has lits to do with Afib. Worth looking into.

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Hi Bob. I always feel that when I hear/see "Afib won't kill you" it is a bit of a misnomer. A bit like saying a bus running over you won't kill you, unfortunately the crushed organs will! I think that it is fair to say that Afib is liveable providing you/I make some life changes. Apart from that it will and can kill you if you do not look after yourself, also if the case were true, then treatment would not be necessary. I raise the point, as I feel that doctors at times are rather flippant on quite a serious condition............just my own thoughts - no offence intended.

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John Interesting point.

At a recent patient support group meeting the EP who presented , for the first time in my experience, spent more time on the subject of the need for anticoagulation than any other part or his talk.

Also high on the agenda was the need for patient involvement in life style changes especially weight loss and dietary changes. In fact it was mentioned that without these many ablations would fail and be a waste of time and if those changes were radical enough ablation may not be necessary..

There is also a growing feeling amongst some medics that AF is actually a symptom of a more deep seated problem rather than a condition in its own right. This at least would account for the avalanche of new AF cases being reported which can not other wise be explained by better diagnosis.

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I don't classify myself as an overly bright person but have had to work a lot out for myself. Unfortunately we live in the medical advice era of "take two soluable aspirin,drink plenty,stay warm/go to bed" - suits all illnesses advice etc. My diet has changed big time, ( ie food & drink) along with losing weight (not that I was overly over weight anyway), none of that came from my doctor. I feel in many respects that medically I have been apart from ( 5mg of Bisoprolol + 1 Asprin per day)........left to get on with it. I am not one for fuss,however, having not had a sicky off from work in 46 years (yes lucky) - a little bit of their knowledge would be gratefully received.

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John, Please research Aspirin as you will find that it has little if any benefit for stroke prevention in those with AF whilst still actually being more aggressive in bleed creation than anticoagulants. In other words more potential for harm than benefit.

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Tbh no matter what site you look up, some will say it's the bees knees, others will knock it down, (and that is the medical profession disagreeing amongst themselves).

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Oh don't get me wrong John aspirin is a valuable drug . just not for stroke prevention and is no longer recommended for such here in UK . It is important as an anti-platelet for use where there is coronary artery disease or where blood flow is compromised by artificial valves or stents but has only about 15% the stroke prevention of anticoagulants whilst being more likely to cause an intestinal bleed than a proper anticoagulant giving 70-80 % protection.

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I suffer from PAF and while on Warfarin had a stroke and was put on low dose Aspirin. When I queried taking both was told Aspirin takes the stickiness out of the blood and Warfarin thins it, and in some cases they have to be taken together. A recent report I read in a newspaper said recent research shows by taking both you are at risk of a heart attack. Made appointment with Cardiologist about this report and told my need to take both outways the risk!

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Nothing thins the blood. Anticoagulants like warfain slow down the clotting process. Both are sometimes needed if there is a problem with cardiac arteries or maybe a stent of mechanical valve.

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Interesting you should mention weight loss as a preventive measure of AFib. My first incident occurred after a loss of 30 pounds. I’ve since regained a few pounds but am trying to lose it. Being overweight is not conducive to good health.

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Re losing weight; I lost mine 21 lbs primarily to help my blood pressure, it was not high as such, but was going the wrong way. Since the weight loss, I have dropped my BP within guide lines, (depending on what time of the day I take it) - mid afternoon is generally good, the rest of the day always seem to be a bit higher.

I also find that an empty/empty-ish stomach, (not a lot of fun), also tend to keep Afib episodes to a minimum.

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You are absolutely not alone. I was just as anxious as you and stayed in bed for 3 days during my first episode of AF. Now I hardly know when I have AF.

You are fortunate, you have had the full assessment, all is well, You are on an AC (anticoagulant) and a beta blocker. Excellent.

Stop reading studies and papers about AF for the present. Better to have a hot chocolate, put your feet up and read this forum.

Loads of clever very well informed afibbers here who will help you if you ask. To begin with have a look at CDreamers excellent talk on AF posted yesterday.

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Stay on this site learn as much as you can it does get better I promise. one of the best things I did was bought a Kardia device that could tell me when I was in AF helpful for some not for others. If you look top right of page for the search box type in some of the questions you need to ask it should come up. Also there are excellent videos on you tube by a doctor Sanjay Gupta who is a cardiologist at York hospital in the UK and the lovely people on here will help if they can. Great news you have no other heart problems.

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Thank you! I am in the process of seeing a therapist in January. I've always had anxiety, panic attacks etc.... And I'm sure the terror I was in that morning didn't help the high heart rate. I think it's a feeling of being out of control, not knowing exactly what triggered it for sure and when the next one will happen that's causing the fear. 5 days prior to this attack my Synthroid was lowered due to a very low TSH (hyperactive) although when I was retested in the hospital it was on the low end of normal and this could have been a trigger.

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I have heard that thyroid problems can be a trigger as can many other things I am sure your therapist will be able to help. You may not be able to control when you have AF but there are a lot of things you can try to manage it.

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I have Graves Disease and had a RAI ablation in 2007. I'm now showing antibodies for Hashimotos and have some very small tissue left. It seems no matter what dose of Synthroid I'm on I tend to go hyper after a few months on the dosage but I don't produce enough Thyroid hormone on my own to go without Synthroid. Very frustrating. It keeps bouncing back and forth from Hyper to Hypo. I'm sure this is playing a huge culprit in this Afib and I'm being sent to a Thyroid Center in Nashville to either have the tissue surgically removed or another round of RAI to kill it out.

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Yes I can see how that would impact your PAF. Tricky for you

How often is your TSH checked? Is that still regarded as a reliable proxy measure of thyroid status and requirement for thyrxine.

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There is a communities site on health unlocked for thyroid maybe there would be someone advice on there.

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Been there and living with it. Read your own words and you will realize how lucky you are to have no structural issues.

Your anxiety is not helping. Think about that and talk to someone, maybe CBT can help you.

Chill. And live long and prosper

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I am very grateful that nothing underlying was found considering the heart disease within my immediate family as well as finding the Afib before a stroke which many are not that fortunate. I'm just trying to cope with it and learn to live with it. The first spell was horrific since I wasn't aware of what was going on and the rate was so high. Maybe in time this fear will lessen. Thanks for the reply!

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The anxiety will lessen - especially if you work at it. CBT for worry thoughts.

& Mindfulness for the physical symptoms - plenty of free stuff on line but there is a great app called ‘Calm’ which I love.

It is a shock at first but plenty of support and shared experience here so stick with it.

Best wishes CD.

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Thank you! This forum is very helpful and comforting to know I'm not alone and most likely will be able to adjust to it. I'm just unsure when to go to the hospital, how long in Afib or how high the rate before I seek medical attention. My INR has just recently reached 2.0 so I'm thinking from what I've read that this is an acceptable range to reduce risk of stroke.

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Depending on you circumstances and personality you might find a Kardia device (AliveCor) helpful. I found it very reassuring to be able to see whether I was in AF or NSR and to be able to see a reliable heart rate when I took light exercise (other HR monitors couldn't give me an accurate reading when I was in AF).

Initially I used it multiple times a day as it helped me to become aware of what my body was trying to tell me. It gave me confidence in discussing how I'd been going when I had reviews with my cardiologist. When my heart rate habitually dropped to the low 40s due to beta blockers and Amiodarone the device was not longer willing to tell me AF or NSR but by then I could read the trace well enough not to feel panic at every small change in my condition. My old school cardiologist was only a little interested in the results, understandably preferring his own observations whereas my EP was interested in the traces I took along to ask questions about. When I have spells of frequent ectopics the device reassures me that my feeling are nothing to be concerned about. Same thing when I showed signs of LBBB for a while recently.

I just use the basic device - I've not used their specialist reporting options.

The device proved especially useful when my spouse developed AF about 6 months after I did - we could see clearly that her trace had changed from NSR to AF and that her HR was 180. We hopped in the car and showed the results to the triage nurse at A&E and within 30 minutes of us seeing the AF report on the Kardia she was comfortable and being treated in the cardio unit - I can't imagine that would have happened without the device.

Some people become obsessive about using the device (including me, I guess) and that can lead to anxiety for some (not me - for me it just results in a feeling that I am more in control of my situation) so keep you own personality in mind as stress is certainly something you can do without.

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Ditto - I had a very similar experience. we captured my husband’s AF on Kardia - he had SSS which wouldn’t have been discovered otherwise and within a few weeks had a pacemaker without which I doubt he would still be here.

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The fear lessens but is replaced with a level of awareness which becomes managable ss time goes on. Ive had one bout of AF 10 months ago and the fear was dreadful. I have a health app on my phone which logs pulse which I used, but less and less now but it was a useful tool to just calm me down and show me it was my mind not my heart that was racing. You control the fear not the the way round.

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I understand your fear....the unknown is always scary. Learn about your AF. Read all you can. Ask questions on here. Be the boss of your AF, don't let it rule your life...because if you let it AF will quite happily take over your life. Don't let AF define you. AF is a condition not a disease. I am in persistent AF and still travel and do MOST things i did before AF raised its ugly head. Go on beat it with a big stick!!!

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Greetings from the UK. A lot of great advice in the comments already so I will just say welcome to our group. I have PAF since January 2017. I felt as you did but these guys and gals on here helped me loads. I also have a Kardia. I highly recommend it. Saved me from quite a few trips to the hospital. I could see when my heart was racing and took bisprolol. Now I'm on bisprolol and rivaroxaban daily. So grab a cuppa tea and relax.

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I was terrified too when I was first diagnosed and it took me a few months to calm down. After getting attacks every day for a while I realised that I wasn’t going to die and gradually learned to cope with them. I am on 10mg of Bisoprolol a day which seems to stop the attacks from getting out of control. I still hate it but feel now as if I have some control.

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Definitely get yourself an ECG machine - Kardias are popular, but other brands are available as they have to say on the BBC :-)

At least then you know if you are in AF or not (google for sample traces of AF).

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no right or wrong answer, but I personally haven't bought an ECG machine because it's pretty obvious to me whether I'm in AF or normal rhythm. I can see some benefit if you need to capture events to show a cardiologist, but once diagnosed the only thing I wanted was a plan of what to do. The EP gave me pills to take when it happens, and they sort it out within a few hours.

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You are not alone! I have had two attacks. Terrifying! I’m scared all of the time. Just keep telling yourself that you won’t die from afib! It is seemingly a very common condition. Go about your normal lifestyle. That’s what l am doing. I even flew to Europe and back ... nothing happened. Ask your doc about what to do if it happens again. Perhaps a pill or something. Merry Christmas! Try to relax ... it may never reoccur.

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Anxiety is a natural human response when facing the unknown. Unfortunaly anxiety does not help because it will make your condition worse, by creating a vicious circle of arrhithmia-anxiety-arrhythmia-anxiety.... You have to break the circle by learning more about atrial fibrillation or AF. This type of arrhythmia is fairly common and is not life threatening by itself. The cause is still unknown and there is no definite and permanent cure. The main risk of AF is the development of a blood clot in the heart, that if it breaks loose, will cause a stroke. Therefore, the first approach is to place you on anticoagulant medication. As long as you are on anticoagulant medication, you should stop worrying that AF will kill you, because it will not. There are two current medical approaches, to deal with this arrhythmia. One is the use of medication or the use of a procedure called ablation. There are two types of medications, one that slow the pulse (Beta blockers) and ones that attack directly the arrhythmia (antiarrhythmic drugs). Unfortunately all of these medications have side effects, some minor, some severe depending of the individual. Ablation is an invasive procedure to attempt to destroy by heat or cold, specifuc areas of the heart that trigger the AF. Again, the results are not 100% guaranteed. As a practical advice, do not be afraid of AF as long as you are taking an anticoagulant. Try to identify the triggers to avoid them as much as you can. Sometimes, in spite of all your precautions, AF may reappear. Again, do not be afraid of AF, it will get worse if you become anxious. Avoid becoming a hypochondriac, because there is plenty of life beyond AF.

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Having just been confirmed that I have lone paroxsysmal afib , I truly understand your anxiety. The anxiety connected with waiting for the next attack is horrible I am with the help of the people here beginning to take the steps back along the road to normality. Life may be different now but it is still worth living. Take care

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My story with afib follows you greatly,,,,it came out of nowhere while I was speaking on the phone one eve,,,,hospital 5 days and home on warfarin and the heart med changed 4x before settling on metropolol,,,,,anxiety attacks before and after this event,,,the first year after was horrid with numerous trips to the ER,,,,erratic beats but no afib and now 2 years. later,,,I have not known afib to hit again,,,,I dealt with anxiety with cognitive behavioral therapy and breathing techniques,,,and it took almost 2 years to lead a normal life,,,,I still have a few moments of ectopics here and there,but I am thankful Ihave settled into this pattern,,,,it may change some day,but I hope not.,,,with time,,,,you do get more accepting of this afib,,,,I am not as scared of it now,,, hoping you find some peace thru tai chi,meditation,breathing exercises etc!

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No you aren't alone. There is no getting away from the fact that AFib is scary but that's because it's so unpredictable. Most of mine where at night. When they happened I used to turn the light on and read. Anything to distract myself from my heart. I found that if I didn't stress out when it happened it would stop quicker and go back to normal.

I understand about not wanting to go to far in case it happens again. I lived like that for years, work and home only two places I felt safe. Eventually though I realised I wasn't living. I'd lost control. My heart had all the power and control over me and I'd come to a standstill.

Please don't do what I did. Don't stop living. I stopped for 10 years.

One day I'd had enough of living like that and booked a weekend break in Paris (crazy I know) Scary as hell but I did it. Did I have an AFib episode there. Yes I did. In the worst possible place. The top of the Eiffel Tower. I was ok though it went back to normal eventually. I'm so glad I took the leap of faith and did it because I knew I could gave my life back.

Please don't stop living. Please don't let your heart have control over you. Please fight back.

Stay strong.

Vicki.

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Oliver your story is my exact same story! If you need something for Anxiety please ask your doctor about Remeron in low dose and Ativan in a very small dose. That helped me tremendously. I had a heart ablation 2 months ago and I am much better even though I still get palpitations after eating meals and at the other times also. I do not think however that it is afib. I think these are probably paac's or SVT'S or sometimes just heart wobbles, nothing like I experienced before ablation though. I hope that your anxieties do get better because anxieties will in fact cause heart palpitations. I myself am much better now that I got the right medications for me. And I believe that you are going to get much better too. It's always hard when this first starts. It was an absolute total nightmare from me and my family also. But things have settled down and I am still waiting for the ablation to heal since it takes 3 months and hopefully these last remaining heart wobbles that I am getting will also go away by the time the healing process completes. Good luck to you and wishing you the very best

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I completely sympathise with you Oliver my first time with a/fib was also like yours 200+ heart rate, beta blockers at the maximum rate improved things for a while but a/fib was unpredictable and came and went randomly. i never knew when it would strike and was too scared to drive incase i had a crash.

I couldn't function well at all just waiting for the next bout of a/fib. scared when it started it that it wouldn't stop, sitting in front of the computer at 2am in the morning heart thumping away i would find comfort in a site like this one where people would be having the same rough time and others giving us advice

I sought every help i could, took magnesium and potassium, did anything, endlessly trying to find some answers, it culmanated in me saying to my cardioloist if you don't help me i am going to go mad i can't stand a/fib any longer please send me to an electrophysiologist.

I went and saw one he did 3 ablations on my heart, none cured me but i am left with a peaceful heart most of the time and 50 mg of Metoprolol control the rate.

I am still in A/fib but mostly cant feel it anymore, I check it with the kardia device i think they are very useful to monitor how the heart is behaving so recommend one you get the same device and definately get an ablation it might just work for you

good luck i wish you well

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Hi there , so sorry to here about all of your anxiety and being diagnosed with PAF , I to was diagnosed a year ago after a one time run of it . I had my ablation procedure 4 months ago and they found I had SVT to . I found this forum as a god send and it’s all been a very fast process for me . I also suffered ectopic heart beats and still do after ablation, but something grabbed my attention in your post !!

Did you say you were given Xanax???

I can speak only from my experience on these medications as I am no doctor. Have you only took Xanax once ? Or have you taken them more than a few times in one week ? The reason I am asking is because when I first started getting all these panicking heart beats 4 years ago , my doctor kindly told me to take lorazepam as needed and it was just anxiety. I only took the dosage he told me and didn’t get much relief as it was not anxiety and SVT at the time . I then stopped talking them after nearly 2 weeks to which I may add! I did not take them every day in that 2 week period only took 6 tablets in 2 weeks. Then stoped them and as no body cared to tell me how powerful they were I went into a withdrawal, yes astonishing isn’t it that this can happen after only 6 tablets. It made my anxiety and depression go through the roof and I didn’t no what the hell was happening to me . Them drugs are all from the same family, Valium (diazepam,Xanax,) and some are short acting and diazepam is longer acting. Sometimes these drugs can make anxiety a lot worse than before and with people who have heart problems can aggravate it . Sorry to be so blunt but I wish I new what I did 4 years ago about them drugs as I would never had taken them. Try and avoid them and do deep breathing, it does help . I to was thinking exactly the same thing every time I had a skipped heart beat , it’s not a nice feeling at all and it’s hard for people who don’t have adrenaline overload to understand what it feels like 😒 but I think you will find a lot of people on here have terrible anxiety about there condition and some get different symptoms with it . I would also try magnesium as that tends to leave the body rapidly when we are in high anxiety. It worked wonders for me . I hope your feeling better soon ❤️

Best wishes

Sam 💖

PS, I have just read your thyroid is playing up ?

Has your doctor not told you that your thyroid being out of balance can cause anxiety and palpitations? It can actually make you feel awful.

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Ps what I should have added I still have AFib. Normally 180-200 I've had 9 ablations from 2006-2015 including one as open heart 6 in 3 years. In the end after much coaxing from my surgeon I had an AV node ablation. I haven't looked backed and for the past almost 3 years my life has been normal.

Living on a battery scares me to death but I try not to think about it on a day to day basis.

Please seek help from your doctor. Don't let this rule your life.

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I do recommend viewing the YouTube videos by Dr Sanjay Gupta about afib. He is a very calm and friendly cardiologist who explains everything very well. He certainly helped me. Also cut out grains and dairy to help reduce inflammation, known to be associated with afib.

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I totally understand, i went into Afib 5 months ago and freaked out ever ince. I learning it wont kill me and to calm down. The xanax helps for sure but im alwways aware of where the closest help would be. It will take time to get my mind back on track. Ive had pvcs for many years and now i have them more do to anxiety, im working on it and this group has been very helpful. You will be fine it just sucks lerning how to cope with it. I notice after eating it can be worse. Keep reaching out the people here have been very helpful :)

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Hi Oliver I can totally relate. I have always had some anxiety but since having afib starting 3 years ago it has been a real struggle. The fear can overtake you and limit everything you do as afib is always there lurking in the brain. I try fighting it with meditation and this forum and reaching out for support. I have had three ablations and lots of anxiety but the afib is better much better. Please don’t hesitate to private message me. I’m always here to help and talk. I so understand where your head is.

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Oliver one more thing if taking anti anxiety medication is what you need to do than do it. Everyone is different and how we deal with this beast is different too. Exercise and breath work is good and helps decrease anxiety but sometimes you need a pill......do whatever you have to to get through. It’s hard accepting that you have this I know but time helps some with that. It’s a beast though keep him in his cage!

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Oliver,

I am just like you. Diagnosed in August and had two unsuccessful ablations.

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Hi Oliver, you're definitely not alone. I was diagnosed last August, woke up at 2am and felt irregular heart beat. Before that event, I started to have panic attack and anxiety for two months and started to have skip beats. I thought it was caused by extreme stress, but cardiologists and EP didn't agree.

From July to October, I had 16 ER visits. And even it's been 5.5 months, I'm still in fear every second. I have three very young children and I'm so worry, frustrated and literally desperate.

Sorry I know my words can't provide any help, but just let you know you're not alone.

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