Mental problems : I am unable to live... - Atrial Fibrillati...

Atrial Fibrillation Support

32,113 members38,279 posts

Mental problems

wbekim profile image
29 Replies

I am unable to live with the constant fear of persistent afib symptoms in particular the palpitations at every waking moment which are virtually 24 hours a day waiting for a cv on Tuesday week and it is only this which keeps me going I have had paf very intermittent apparently for 10 years and went persistent mid June this year staying in afib with this qol is not an option for me any longer why it takes so long to try options flex amio etc is beyond me consultants all say it won’t kill you and hr is within acceptable limits but I think it can kill you and will if people are left because they are ‘controlled’ anybody else who is in unstable mental state whilst waiting for next episode to happen

Written by
wbekim profile image
wbekim
To view profiles and participate in discussions please or .
Read more about...
29 Replies
Bagrat profile image
Bagrat

I am so sorry you are struggling so much. Like pain, symptoms are of two types, what is actually happening and what your mind frightens you into thinking the symptoms MIGHT mean. Thoughts are not reality, they are just thoughts. Have you considered counselling and support for your health anxiety?? I did and life is much better. I should be clear I don't have persistent AF just a brain that thinks up symptoms various, to keep me on my toes.My husband has had permanent AF for 10 years as well as other more serious heart issues and still here to tell the tale. I hear that you are saying you think it could kill you, but again theses are thoughts not facts, huge difference, thank goodness.

I am not down playing your fears I know how real and concerning they must be to you.

These thoughts and fears can be reduced and make life better altogether. I know how hard it is to believe that. I went to a Human Givens Counsellor. There is a website

wbekim profile image
wbekim in reply to Bagrat

Thanks for your comments I agree the thought of what may happen is completely different to what probably will happen I have massive anxiety around the continuous palpitations not temporary palpitations and trying to distract from them actually tends to make them feel worse I honestly cannot live with them anymore and either have to eradicate them or I fear the worse

Bagrat profile image
Bagrat in reply to wbekim

Sadly AF is not a black and white ailment. Be assured symptoms change and for whatever reason, do become more manageable.I had a period a few years ago when ectopics were frequent and unsettling. but they settled down, I find breathing in for 7 out for 11 particularly helpful as the longer out breath helps the parasympathetic nervous system calm things.

My feeling would be to seek support for your anxiety and everything else will fall into place. You don't say if you've tried talking therapies or CBT even, or if you have family and friends who provide a modicum of support. This AF can be lived with.

wbekim profile image
wbekim in reply to Bagrat

My symptoms are not ectopics they are almost continuous flutters/flip flops which makes concentrating or relaxing impossible, breathing uncomfortable and any form of physical act extremely tiring I repeat these are not episodes of symptoms they are continuous

Ppiman profile image
Ppiman in reply to wbekim

What do you mean they are not ectopics? What else can they be? An ectopic beat is a ventricular contraction that results from other than the sinus node. This changes the timing of the next nodal stimulus and leads to a heavier feeling beat / valve closure. I have very many of these each day often in long runs. They are worse to experience than AF in a way because of their unpredictability and the heavy "thump" and strange "rippling" feelings that accompany them.

I have been told that my coming ablation for AF will include ablating the atrial misconducting cells, also, and should reduce or remove the ectopic burden.

In terms of anxiety, you need to find stronger reassurance than you have been able to so far that these "extra" beats do not present a future health risk for you. How you can get this level of reassurance, I do not know but others have made good suggestions. In my own case, two MRI scans five years apart showing no cardiac deterioration helped me a great deal. Given the severity of your own anxiety, I would be considering asking for a similar scan or an ablation. A private cardiac MRI scan is expensive but might be possible - have you considered that?

Health anxiety is on of the most difficult to cope with and treat, I gather. My own experience of it has made life difficult at times but I have always coped, thank goodness. You seem to have it far worse. I wish you luck.

Steve

wbekim profile image
wbekim in reply to Ppiman

When I send my ecg from kardia report comes back afib but no ectopics I have always considered ectopics to be early or late beat in normal rythmn my palpitations are completely different from ectopics and I think that is why I am having trouble understanding and accepting

Ppiman profile image
Ppiman in reply to wbekim

Sadly, the Kardia device is very limited in what "determinations" it is allowed to analyse and report. My own palpitations were simply called "NSR with wide QRS" when for all to see there had been runs of odd beats. This is why I sold it and changed to using a Wellue ECG device as that uses AI to analyse the result and offers a far wider set of results. I am currently trying a Contec PM20 which gives good results on its screen, without the beed even for a mobile phone or laptop.

But I feel pretty confident that what you are having will be broadly similar to what I have and to some others here. Essentially the cells in the left side of your atrium have decided to go awry and bring on "palpitations". In some people, this "atrial mis-conduction" shows up only as AF but not in you and me, and several others here. This makes it all harder to deal with and even more stressful.

The "palpitations" will, however, still be "ectopic" in origin, since this means no more, as I said in my last post, at least as I understand it, than the heart contraction (atrial or ventricular) is set off from the wrong place and out of time, i.e. not in a regular way from the heart's natural pacemaker.

You will be fine physically no matter how your mind tells you otherwise. I feel sure that a day will come in the future when you will look back and say to yourself, "Well, I thought the worst, but, what do you know - it never came to pass I am still here, after all!"

Steve

wbekim profile image
wbekim in reply to Ppiman

Thanks for advice and kind words I hope so

Aegean56 profile image
Aegean56 in reply to Bagrat

CBT was extraordinary helpful to me as well as joining an in-person support group for people with health anxieties. And you say it's not a panacea... 12 yrs after diagnosis and event free for 9 years, the start of Covid put me in a tailspin . Virtual booster CBT sessions were a Godsend . Controlling your anxiety while not curative it does help. Wishing you all the best.

Franks-Nan profile image
Franks-Nan

You need to see your doctor and get some valium, just to calm you down and once calmed down you will probably find 90% of your heart issues are anxiety related, When we are so hyped up we create so much muscle tension which squeezes all our chest muscles, how do i know? because i have been exactly where you are and lived in fear, fear, fear, i was so scared of my afib i never locked my front door in case somebody needed to get in. If being zonked out on valium does not get rid of your feelings, then you can see what other things are available for you like a CV or ablation. I am not saying spend the rest of your life on sedatives but for a couple of weeks it just might sort the wheat from the chaff. Good luck.

wischo profile image
wischo in reply to Franks-Nan

Same here and I know the destruction anxiety can cause to your health and I fully agree that once it gets that bad then first stop medication works very well along with therapy afterwards if required. People that constantly knock these drugs have never really experienced severe anxiety so are unqualified to give their advice to those that have.

Karenjaninaz profile image
Karenjaninaz in reply to Franks-Nan

The problem is Valium is very addictive and does not help your cognition over the long run. Valium has quite a long half-life in other words: one dose will last three days before it’s totally excreted. If you take a Valium every day, like my mother, did it builds up and you get a depression. She also drank her wine…

Suggest counseling, ablation. I’m high risk, pulmonary 82 and had a successful ablation in April for PAF. I can relate very much to the craziness about the symptoms. Even though I’m a medical professional, retired nurse anesthetist, I can relate to the nutty feelings and the anxiety.

Interestingly, after I just had the updated Covid vaccine I had a lot of premature beats not AF but PACs. I found taking extra magnesium basically abolished them, and then they passed after a couple of days.

108cat profile image
108cat

Tomorrow is Monday it's important you talk to your GP (or cardiologist if you have access) and tell him/her exactly how you feel. Tell them you are finding it too difficult and that you need help.

I know what you mean when you say 'breathing is uncomfortable' but can you try pushing through that feeling, try the slow breathing and if you can stick at it, you might find it helps to calm your mind and heart - as Bagrat says "breathing in for 7 out for 11 particularly helpful as the longer out breath helps the parasympathetic nervous system calm things."

sending all good wishes ..

Cat

Autumn_Leaves profile image
Autumn_Leaves

You’re not alone and you do have options. Firstly, check whether you can self refer to your local Talking Therapies and see what they can offer you. Also, contact your GP to see if there’s any chance of a referral to a counsellor on the NHS. There are group sessions for people diagnosed with chronic conditions in some areas at least, so it’s a case of finding out what’s there.

Whether or not you need anti anxiety medication is a discussion you should have with your GP. Not everyone wants to add to their “polypharmacy” load but it’s still a good idea to see what your GP can offer, whether it’s a talking therapy or something else like CBT.

Relaxation apps are available and some people find them useful. As long as you find a way that suits you, bringing your body into a resting state and out of fight or flight. Different people have different preferences. Some like Yoga Nidra, other people like apps like Calm or Headspace. There are many different breathing exercises and techniques you can find for free online, like “box breathing”. Find out what works for you.

How you manage your AF (if at all possible) is a discussion you need to have with your cardiologist if that’s a realistic option. You might feel better if you adjust whatever medications you are on.

I’m sure you know all about minimising caffeine and maybe trying chamomile tea, but that would only make a significant difference if you were having a lot of strong coffee throughout the day, so maybe look at where you could make a few tweaks to your daily habits to see if there’s anything that might not be helping your body and mind stay calm. If there’s nothing there to tweak, that’s OK.

Help with anxiety and self help techniques do exist. It’s not easy. CBT takes a bit of effort and relaxation exercises require self discipline, but it’s important to be persistent and build in some new daily habits. It’s a marathon, not a sprint, as the saying goes. Good luck!

Cavalierrubie profile image
Cavalierrubie

l am sorry to hear of the problems you are experiencing at the moment. I have also experienced fear with health anxiety and AF is very frightening if you are not fully reassured that you are ok. The way through this is to talk to a professional who can put your mind at rest. If you go to the bhf. org.uk website there are cardiac nurses you can speak to. Their helpline tel. no. 0808 802 1234. With a CV booked in 8days time you are on the right road to feeling better, so hang on in there. Try to get an appointment tomorrow at your GP practice, even if it’s just with a nurse to talk to. There is short term medication for anxiety until your treatment. You shouldn’t have to suffer like this. Let us know how you are. This will pass. Sending love and prayers.

CDreamer profile image
CDreamer

Unfortunately it seems you are hyper sensitive to the sensations of AF, some people are whilst others don’t feel a thing. You also seem to be in a self perpetuating feedback loop - the more you feel the sensations, the more your anxiety rises, the more sensitive you become to the sensation and the more you worry.

Many, many people live in persistent AF and live well whilst others like yourself struggle, we are all different. Please do really press upon your doctor just how symptomatic you are and the sense of urgency you feel that something needs to be done to help you, which may mean a multidisciplined approach, in an ideal world

You have had some good advice advice but it seems to me that you may want to look at some sort of desensitisation therapy as well as relaxation and breathing techniques - all of which help. Once you have a plan in place to help you cope, life becomes much easier

Wish you well for you appointment tomorrow.

Jajarunner profile image
Jajarunner

Bless you. I've never understood why they don't just do a cardioversion when you need it. My local hospital left me unable to barely walk for 5.5 weeks!! I now go to A&E at the teaching hospital an hour away if I get afib coz they listen to me (!) and cardiovert very quickly. Which means you recover quicker. I hope you get sorted out soon and feel better 🙏

Marymara profile image
Marymara

What you are saying was me, some time ago now, I said exactly the same thing, after having AF for thirteen years it's really not the same, you do get use to it as long as the rate is controlled, I fine being in AF , keep the rate down and you will get use to it.

wbekim profile image
wbekim in reply to Marymara

What rate is considered controlled I am in 90’s doing nothing and 120-130 when walking

Marymara profile image
Marymara in reply to wbekim

Not really over 100 regularly

Marymara profile image
Marymara in reply to Marymara

Of course it will raise when walking.

wbekim profile image
wbekim in reply to Marymara

So under 100 sedentary and slightly increased when out and about

wbekim profile image
wbekim in reply to Marymara

Even when walking or going upstairs

Marymara profile image
Marymara

I'm not a doctor, ask your doctor what's ok for you.

wbekim profile image
wbekim in reply to Marymara

Sorry I just assumed there was a general rate control

Cavalierrubie profile image
Cavalierrubie in reply to wbekim

HR 60- 100 is normal. BP between 90/60 to 120/80. is normal. HR is higher on exertion but should come down when at rest.

Willow55 profile image
Willow55

Sorry you are going through this. I just want to say I have had a lot of worries re AF...over almost 2 years. No answers from ecg etc. Finally discovered vitkmk7 is the cause in my case. Was taking it with d3 etc for bones.Breathing everything was getting worse.

This group was a marvellous help and kind support. Before you ask "how is this related to you?" Simply I know how terrifying it is when your heart won't even let you rest never mind excerise. Apparently vitk2mk7 has this effect on some and I had been wrongly advised on amount. Consultant told me if I had been taking it for much longer AF might not reverse.

I hope you get the help you need

wbekim profile image
wbekim in reply to Willow55

Thanks willing to try anything and everything to find acceptable level of symptoms can you buy as standard from chemist

BaileyC57 profile image
BaileyC57

I have been in AFIB every day for the past two years and I have always had anxiety all my life and I take Xanax and that helps! I take a lowest dose ! I was very scared when I got AFIB four years ago and now in Afib all the time! I had a conversion a year ago and did not work, so I relay on my beta blocker to get me through!

Not what you're looking for?

You may also like...

Does Flecainide Work for Persistent Afib

Hello. In February, I had a cardioversion after being in persistent afib for 5 months. While I...

Recommendations for an electrophysiologist

Seeking recommendations for an excellent electrophysiologist with a long track record of successful...

IAfib and mental health

Hiya all hope your all ok. I have a problem that some of you may relate, well before i was...

whilst the country celebrates the coronation on Saturday I’ll be raising a glass to one year since my mini maze and one year afib free

Where have the last 12 months gone? I honestly can’t believe it’s a year since I had my mini maze...

Living with AFIB how?

2015 when I first went into persistent AFIB I took many different medications to control the afib...