I have paroxysmal atrial fibrillation and would like to hear from anyone else with this condition. The main problem I have with it is the whooshing in my head I get occasionally when I’m having an episode. How do other people cope with this, please.
are you the same: I have paroxysmal... - Atrial Fibrillati...
are you the same
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BobDVolunteer
Our current membership number over 26,000 so yes plenty here.
Yes I have pulsatile tinitis as well (all the time) and hear my heart beating in my ears. Been like it for many years now. It's fine when I'm busy and plenty going on but not so clever at 4 am. lol 😆
We cope because there is little alternative.
Cheers Bob you have just gave me the name for it.
I have read recently that the feeling is called that although my consultant says it’s an electrical impulse from the heart trying to correct the beat. Thank you for answering my query. It helps to know others are feeling the same as me.
I don't think you quite understood . AF is a faulty electrical signal which discharges in a chaotic manner around the atrium so that instead of contracting in a regular manner it writhes like a bag of worms. What you feel at your wrist or other pulse are just a few of those signals which get through to the ventricle, the main pumping chamber.
I’m not sure I like that image but it does sum up the chaotic heart beat . Thank you for explaining it better than my cardiologist.
Are you able to advise me on how to handle a long haul flight? I’m always nervous when flying although usually OK once I’m airborne but next February I shall be flying to New Zealand for five weeks and wonder how I’ll cope should I have an episode en route. My doctor suggested a low dose Diazepam or something similar. Is there anything else I can do?
Give plenty of time for your check in etc so any stress is reduced, make sure you have plenty of your medication in hand luggage, wear flight socks, stay well hydrated, do not drink alcohol , move about when permitted and enjoy.
Yep keeping busy is my go to . I'm better when I'm with other people too. Distraction is the key but as you say, not funny at 4am or when I'm meditating or just want quiet time.
Lying down. Try not to stand up too quickly. I suffer from sinus/ tension headache all the time now. When in afib I have the whooshing full head sensation and my balance is all over the place. Even sitting down it feels like my head drops at times. Before diagnosis I thought I had inner ear problem.
Yes, you describe it very well. Do you get a brief feeling of heat as well in your head? I am less anxious already reading yours, and Bob’s, experiences. Thank you.
Yes heat feeling and feeling like cold water running through head. Not sure if that's just my sinus problems. Strangely sinus problems and afib started around same time. Getting an ep consultation for possible ablation soon. My afib is also paroxysmal. Was daily through stress since diagnosis in 170 at times. Calmed down a little at moment with meds.
I get the feeling of heat in my head and down both arms, when the rhythm tries to go back to normal. There’s also a loud noise in my ears. I thought I was dying the first time this happened, but still here to tell the tale.
I was terrified at first but when I came to this site, Bob told me I was unlikely to die from it, and that was a huge relief. ( thanks again Bob). You will learn to live with it, take care.
Yes I too can hear my heart beat when sitting quietly, or in bed, pulsatile tinnitus. That's why I know as soon as I've gone into AFib. I actually find it comforting when in NSR, I know everything is fine, but when I do go into AFib, I find hearing my heart beating randomly very disconcerting.
yes, it’s difficult to describe to those who haven’t AFib how we know as soon as an episode has started and that feeling of relief when all is back to normal even though my heartbeat may not go over a hundred very often. It’s the fluctuation that gives the strange sensation.
I had pulsatile tinnitus for many years - I was used to it.
Then I had an ablation and awoke from the sedation back on the ward and everything was incredibly quiet - I thought I had died - then I heard a nurse saying wake up, wake up. It took me weeks to get used to NOT hearing my heartbeat. The body gets used to anything.
I found listening to audio books with ear phones distracted me and helped me sleep - had to be a really boring book though.
My electrocardiologist tells me it will get more frequent the older we get. Yes, other unpleasantries accompany afib and yes, it can include balance-associated symptoms.
I’ve had paroxysmal afib for a number of years, it comes and goes. It’s getting more frequent and sticking around longer and longer, so many days I’m not up to snuff but I manage. A month before Thanksgiving Doc did a cardioversion. My heart was calm almost a day before it came back and has been persistently on and off since. Most of the time my head is just awkward inside.
Next up for me is another electrocardioversion, which I do not look forward to. (A dozen years ago was my first electrocardioversion.) I don’t dwell on it, or its other discomforts. Like I said, I manage. I just do everything my doc says and try not to worry about a stroke.
I have irregular tachycardia, irregularly . Decaf coffee helps. Mine appears to be my immune . Cold weather or stress brings it on . Suggest rest during episodes . Try to diagnose in a diary if anything coincidentally brings it On. My ECG and 24 hour halter monitor results , Cardiologist thinks it’s on normal side reading . If increases G P will refer to Cardiologist I thought whooshing was blood pressure ? Do you have a home blood pressure monitor ? Good to have , keep diary Good luck .
yes I do have a blood pressure monitor and my husband has a smart watch which I use when wanting to check BPM during an episode although I sometimes wonder if that doesn’t make me more stressed. I do keep a diary to mark how long between episodes and how long they last but so far I have no indication of what can trigger them.
if used too much I’ve read it can do that. I won’t get one . If it doesn’t alarm on a 24 hour halter monitor ( or longer) . Years ago a private Cardio trusted me said I hace an extra heart beat now and again. If it’s beyond that and alarming a G P will see me. Electrics of heart.
Hi
I have it and ive found that as long as I take my meds and I live a healthy lifestyle - sleep, low alcohol, no heavy meals blah blah! It doesn't bother me
Me too. A pain as Bob says, when it's quiet and you're trying to get to sleep. I should try to ignore it if you can x
Thank you for posting this! And the people who have replied. I honestly didn't connect my pulsatile tinnitus to my AFib but it's reassuring to hear other people get this too as well as poor balance (although I usually get the tinnitus at night so balance isn't so much of a problem then 🙂). What an informative place this is.
I didn't know they were linked either. Very interesting!
Hi. Are you talking about a sound or a sensation of whooshing? I can read answers to both above. And both related to AF. For me it's the sensation. I often feel a wave of heat, my breathing pattern changes, and a kind of 'rushing' in my head - that's a signal that AF has started or is about to start. I can also get the rushing if my HR increases suddenly during an episode but it's more likely to happen towards the end when I can feel faint. This is known as presyncope and it's best to lie flat and wait for it to pass. Our blood pressure fluctuates a lot during an episode of AF and it's my understanding this can cause the presyncope.
So welcome to the club - you're 'normal'!
I feel like all my worries have finally found an explanation. And yes, the whooshing is a sensation and my AF episodes follow the same pattern as yours in almost every detail. Since taking (the lowest dose) of Bisoprolol the cardiologist has talked about having a pacemaker fitted so he can raise the dose as my regular heartbeat is now in the 50s. It was higher before I was put on the beta blocker. I’m not sure what to do at the moment.
The beta blocker lowers your heart rate and keeps the rate steady We all seems to start off with PAF mine started years ago when there was very little known about a/f and not much treatment.
My advice would be to try to get an ablation while still only PAF a friend of mine had one at that stage of afib and was cured.
Myself it had progressed to permanent and too late for a complete cure.
Try to see an electrophysiologist your cardiologist would be able to arrange it.
I have it also and judging from the number of replies it is quite common. I found it very hard to deal with at the beginning and posted about it at the time. BobD gave me a similar answer then. Nowadays I just try to ignore it and it rarely interferes with my sleep though I hear it immediately I wake up. Best of luck.
Hi, yes have AF and as Bob says Pulsatile Tinnitis in time with my heartbeat. Sometimes I can forget about it and other times long for it to stop.
I have it too. I’m 43 and had one failed cardioversion, 3 ablations and I still get debilitating AFIB. There are no triggers - I had it Mon-fri last week in a bad way but after having one of the most stressful weekends of my life, it had surprisingly gone away during that time when you would think it would make it worse. My sister asked me to describe it last night funnily enough and I said it feels like my entire body is quivering from the inside out and when it’s particularly bad, I can’t concentrate on anything.
I’m having a 4th ablation after Xmas 😳
I can only hope this fourth one is more successful. Looking for a distraction is always one of the hardest things, especially at night. Let us know how things go.
Wow, you are pretty young to have AF. Have you had a sleep study to determine if apnea is one of the underlying causes?
that’s probably one of the only tests I haven’t had. I’ll have a look into this - thank you!
FYI, I only mention this because at my last visit with my EP on 11/30/22 he spoke about the connection between apnea and AFIB. He indicated that before he does an ablation he orders a sleep test to determine if apnea is present. He has used CPAP as a first line of treatment in prevent further occurrences of Afib. I have recently been using CPAP and have noticed a difference.
I also have pulsatile tinnitus and get running liquid type sensations and heat sensations in my head which I have had for many years. I've had them so long that I thought everyone heard their heartbeat in their ear. It's only recently that I was talking to a few family members that I realised not everyone did lol
Just wondered if yours is worse with head tilted forward.
Hi Tommy. The sensations just happen randomly with my head in no particular angle. The pulsatile tinnitus is more noticeable at night when I am laying with my head side onto the pillow
Singwell, above, describes the sensation absolutely for me.
hi there, I have it when I go to bed. I always sleep with my hands under my face for som reason. So I have to put them under the pillow. I also find that if you put some sleep meditation music on with earphones you can’t feel it and it makes you nod off.
had paroxysmal AFib for 8 years, volunteered for pulse field ablation (clinical trial) over a year ago. Nothing but a few ectopics since. So glad I was able to get this new ablation. No more flecainide or diltiazem!
That sounds a very important trial. It leads me to ask which country offered you the opportunity to take part.
Mayo Clinic in Rochester, MN USA
That’s what I thought. I wonder if it will be offered here in the UK. Being a clinical trial it might take a while for the results to be shared. Thank you for telling us about it.
I thought Europe already has PULSE FIELD ABLATION. Much better than RF or Cryo.
I hadn’t seen anything in the papers but following your reply I find that the first pulse field ablation took place last June at the Royal Papworth hospital in Cambridge. That sounds great. And less risky too. Thank you. Next time I have an appointment I’ll mention it to my cardiologist.
Knew there had to be a name for it! I am almost constantly aware of my heartbeat, especially if having bouts of ectopics or in AF. It's very disconcerting but nothing to worry about. I can recommend wireless earbuds for night times, where podcasts and audio books etc are distracting enough to sleep.
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