Permanent AF.

[cicek]

Hi all. I have gone from PAF to persistent and now in permanent AF. Easier to cope with as I don't feel my heart rate at all now. However, what I do frequently get is a sound in my ear like a clock ticking. It continues for hours and mimics my HR. Does anyone else get these symptoms? At times I do find it really difficult to cope with particularly if I am sitting somewhere quiet. Thank you.

[Paulbounce]

Hi Cicek.

It is not uncommon for us afib suffers to experience symptoms such as a ticking or ringing sound in the ear, also known as tinnitus. Tinnitus can be caused by a variety of factors, including changes in blood flow.

If you are sitting somewhere quiet maybe put some back music on to 'block' it out a little. Might help / might not but worth a try.

Paul

[cicek in reply to Paulbounce]

Thanks for your reply. I do know of tinnitus but have never suffered with it before. Never even thought about that but as someone on here as mentioned it could be Pulsatile tinnitus. The joys!! As if AF isn't bad enough 🙂

[BobD Volunteer]

Pulsatile tinnitus. Had it for years and yes bloody annoying particularly at 3 am.

[7164 in reply to BobD]

I’m always interested in those that go from paf to permanent and say it is easier to live with. If that is the case then why do most of us try to treat the paf. Why not live with the horror of it until permanent.

Just a question?

Rod

[mhoam in reply to 7164]

Rod, I went into persistent AF in April ‘22. Whilst my HR was just 80-90 bpm, sadly I was much more symptomatic with breathlessness and syncope. I’m afraid it’s not guaranteed to be easier to live with

Cheers

[DawnTX in reply to mhoam]

I agree, because I am like you with no break from feeling awful. For the past two weeks my heart rate is normal. However, that does not mean no a fib. It just means my heart is getting a little bit of a break not straining as much. That is why most likely I am getting a CRT pacemaker, so that my two ventricles will work together. A fib will stay in the background, but be unable to send messed up signals. Because a fib is not curable my doctor has decided in my words to just ignore it and go on and fix me so it cannot interfere, and I can have quality of life finally. He looked at the whole picture, including all the scarring. My heart now has from ablations. When you think about the size of your heart, it’s not all that big how much can you take because of his way of thinking that is the reason I’m considering the pacemaker. In fact almost looking forward to it now. A month ago I was dead set against it. I know others out there feel like me right now. I do not want to be a lump sitting on the couch, unable to even do a load of laundry without misery. This is not quality of life. This is not living. At least I don’t feel I am. I am looking out the window at the gorgeous weather right now surrounded by the beautiful property here we are the deer come to be fed. All I can do is look out the window. Sometimes I have chairs strategically set so I can go out a little bit further. I feel like a mouse scurrying I go from chair to chair.

we have to do what is right for us. I do have a problem when I see doctors they will do dozens of cardioversions etc.. We know there is more out there now why they don’t offer the solutions I don’t quite understand. I’m glad I have a doctor that wants me to feel better as his priority. The number of people I have met using him and knowing of his work is amazing. I have not heard one. Bad word yet including nurses, one cardiac nurse told me whatever he tells me I can take to the bank. Lol I actually told him about it. He was so sweet and humble. Make sure you are getting what you deserve.

[pip_pip in reply to DawnTX]

Nicely written DawnTX 😎

Phil

[Murdy1 in reply to mhoam]

How true!

[cicek in reply to 7164]

I was in PAF for years and years getting worse all the time. I get what you are saying and those of us who have suffered severely will perhaps know what I mean when I say at least now I don't get the thumping chest, dizziness and shortness of breath. Of course permanent AF still requires medication but I'll take that thanks rather than suffer like I did before. At least medication for PAF helps it a little certainly did for me in the early stages.

[DawnTX in reply to cicek]

I have permanent a fib, but it’s not a break from anything. I still feel horrendous as each day passes. I feel that much more sure about going further CRT. My concern though is what if it doesn’t work, there’s no turning back.

[JOY2THEWORLD49 in reply to 7164]

Hi

I can imagine what you are asking but

it is important to try and control any PAF instead of calling for assistance in emergency cause anxiety makes it worse.

My friend used to describe his bad times. At least he did take 'manage' pills. He used to take another a PIP. and wait it out.

Young at late 50s and years of it he lined up for catheter ablation.

In his case surgeon found that when in critical time he had two electrical unruly electrical responses at once.

Eventually the PIP worked.

The ablation procedure helped the surgeon understand what was happening.

He says he is cured 1 year later. Now wife can stop thinking that he is a hypercondriact! ???

I used to say ring 111 or go to the hospital whereas he worked through it.

We are all different as some of us will 'ride it out' with the knowledge that the PIP will eventually work.

Some will take daily meds to prevent the attack from becoming an emergency.

Preventing an episode I personally think is best. Emergency assistance is left for others such as stroke, heart attack. embolism problems etc.

I was found to have rapid persistent heart rate.

I have had to demand a specialist when no follow up, no control and eventually I went private. The best thing ever because he was interested.

Otherwise I manage myself. I'm still hoping for AF to go away like the thyroid cancer was removed!

cheri JOY. 73. (NZ)

[Still_Breathing]

I also have a mechanical valve, constantly ticking especially in bed and when its really quiet.I get more concerned when I think I cannot hear it ...... 😁

[JOY2THEWORLD49]

Hi

Sounds like tinnitus.

Not a good thing to live with.

My Aunty has music playing all night. She has lupus.

Talk yo your Dr about this.

cheri jOY

[cicek in reply to JOY2THEWORLD49]

Thanks for your reply. I haven't reached a can't stand it stage yet just the irritation from it and thank goodness it isn't that often.

[Herbie30]

I used to get pulsative tinnitus when I was taking Bisoprolol. It disappeared after I moved from Bisoprolol to Diltiazem. This may be an option for you.

[cicek in reply to Herbie30]

I am on Bisoprolol and have been offered Diltiazem. Does this drug cause tiredness the same as Bisoprolol? Thanks.

[Herbie30 in reply to cicek]

It hasn’t had an adverse effect on me.

[Singwell]

Pulsatile tinnitus and I'm a musician. I use it as a stress marker now - might as well! Louder and faster = more stressed out.

[cicek in reply to Singwell]

Sorry to hear this but hope you are managing to cope.

[Desanthony]

I live with tinnitus permanently. I have a pillow speaker I use at night to play soft music or sounds and help block it out. I would speak to your GP first to see if there is anything that can be done but otherwise I find having the radio on is the best thing I can do to "mask" the sounds. Some days are worse than others but I am never without my "company".

[Hanibal]

Hello,

I have AF and Tinnitus.

Like you, I can't feel my HR as it belts away, but I do get a kind of rhymical wooshing in my ears (when the buzzing and other stuff stops!).

This site has a section for Tinnitus which I found to be very helpful....

Mike

[Peacefulneedshelp in reply to Hanibal]

My tinnitus recently changed sounds which I didn’t realize was the tinnitus. I had my son and husband checking inside and out of the house listening when finally my adult son, (the smart ass that he is but I love his humor) says, what else are the voices saying? LOL.

[cicek]

Thanks for this information. Never heard this term before. Obviously heard of tinnitus. If I ever get to see GP again I will mention it 😂